5 stages of illness suchman

Cultural Diversity in Health and Illness

CULTURALCARE

There is something that transcends all of this I am I . . . You are you Yet. I and you Do connect Somehow, sometime.

To understand the “cultural” needs Samenesses and differences of people Needs an open being See—Hear—Feel With no judgment or interpretation Reach out Maybe with that physical touch Or eyes, or aura You exhibit your openness and willingness to Listen and learn And, you tell and share In so doing—you share humanness It is acknowledged and shared Something happens— Mutual understanding

—Rachel E. Spector

Cultural Diversity in Health and Illness

E I G H T H E D I T I O N

Rachel E. Spector, PhD, RN, CTN-A, FAAN Needham, MA 02494

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Library of Congress Cataloging-in-Publication Data Spector, Rachel E. Cultural diversity in health and illness/Rachel E. Spector.—8th ed. p. cm. Includes bibliographical references and index. ISBN-13: 978-0-13-284006-4 ISBN-10: 0-13-284006-5 1. Transcultural medical care—United States. 2. Health attitudes—United States. 3. Transcultural nursing—United States. I. Title. RA418.5.T73S64 2013 610—dc23 2012012708

10 9 8 7 6 5 4 3 2 1

I would like to dedicate this text to

My husband, Manny; Sam, Hilary, Julia, and Emma; Becky, Perry, Naomi, Rose, and Miriam; the memory of my parents, Joseph J. and Freda F. Needleman, and my in-laws, Sam and Margaret Spector; and the memory of my beloved mentor, Irving Kenneth Zola.

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Contents

PREFACE xi

ABOUT THE AUTHOR xvii

ACKNOWLEDGMENTS xviii

UNIT I CULTURAL FOUNDATIONS 1

Chapter 1 Building Cultural and Linguistic Competence 3 National Standards for Culturally and Linguistically

Appropriate Services in Health Care 8 Cultural Competence 11 Linguistic Competence 11 Institutional Mandates 12 CULTURALCARE 13

Chapter 2 Cultural Heritage and History 19 Heritage Consistency 20 Acculturation Themes 29 Ethnocultural Life Trajectories 32 Commingling Variables 34 Cultural Conflict 36 Cultural Phenomena Affecting Health 37

Chapter 3 Diversity 43 Census 2010 45 Immigration 48 Poverty 54

Chapter 4 Health and Illness 62 Health 63 Illness 74

UNIT II HEALTH DOMAINS 85

Chapter 5 HEALTH Traditions 89 HEALTH and ILLNESS 91 HEALTH Traditions Model 92 HEALTH Protection 95 Health/HEALTH Care Choices 102

vii

viii ■ Contents

Folk Medicine 104 Health/HEALTH Care Philosophies 108

Chapter 6 HEALING Traditions 120 HEALING 121 Ancient Forms of HEALING 123 Religion and HEALING 124 HEALING and Today’s Beliefs 136 Ancient Rituals Related to the Life Cycle 138

Chapter 7 Familial HEALTH Traditions 158 Familial Health/HEALTH Traditions 160 Consciousness Raising 171

Chapter 8 Health and Illness in Modern Health Care 178 The Health Care Provider’s Culture 179 Health Care Costs 182 Trends in Development of the Health Care System 187 Common Problems in Health Care Delivery 191 Pathways to Health Services 195 Barriers to Health Care 197 Medicine as an Institution of Social Control 199

UNIT III HEALTH AND ILLNESS PANORAMAS 207

Chapter 9 HEALTH and ILLNESS in the American Indian and Alaska Native Population 210 Background 211 Traditional Definitions of HEALTH and ILLNESS 213 Traditional Methods of HEALING 215 Current Health Care Problems 222 The Indian Health Service 228

Chapter 10 HEALTH and ILLNESS in the Asian Populations 238 Background 239 Traditional Definitions of HEALTH and ILLNESS 241 Traditional Methods of HEALTH Maintenance

and Protection 246 Traditional Methods of HEALTH Restoration 247 Current Health Problems 257

Chapter 11 HEALTH and ILLNESS in the Black Population 265 Background 266 Traditional Definitions of HEALTH and ILLNESS 270 Traditional Methods of HEALTH Maintenance

and Protection 271

Contents ■ ix

Traditional Methods of HEALTH Restoration 272 Current Health Problems 279

Chapter 12 HEALTH and ILLNESS in the Hispanic Populations 291 Background 292 Mexicans 294 Puerto Ricans 308

Chapter 13 HEALTH and ILLNESS in the White Populations 323 Background 324 German Americans 326 Italian Americans 330 Polish Americans 334 Health Status of the White Population 339

Chapter 14 CULTURALCOMPETENCE 345 CULTURALCOMPETENCY 351

Appendix A Selected Key Terms Related to Cultural Diversity in Health and Illness 354

Appendix B Calendar: Cultural and Religious Holidays That Change Dates 364

Appendix C Suggested Course Outline 367

Appendix D Suggested Course Activity—Urban Hiking 373

Appendix E Heritage Assessment Tool 376

Appendix F Quick Guide for CULTURALCARE 379

Appendix G Data Resources 381

BIBLIOGRAPHY 383

INDEX 403

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xi

Preface

Every book, every volume you see here, has a soul. The soul of the person who wrote it and of those who read it and lived and dreamed with it.

—Carlos Ruiz Zafon, The Shadow of the Wind, 2001

In 1977—more than 35 years ago—I prepared the first edition of Cultural Diversity in Health and Illness. Now, as I begin the eighth edition of this book— the sixth revision—I realize that this is an opportunity to reflect on an endeavor that has filled a good deal of my life for the past 30 years. I believe this book has a soul and it, in turn, has become an integral part of my soul. I have lived—through practice, teaching, and research—this material since 1974 and have developed many ways of presenting this content. In addition, I have tracked for 40 years:

1. the United States Census; 2. immigration—numbers and policies; 3. poverty—figures and policies; 4. health care—costs and policies; 5. morbidity and mortality rates; 6. nursing and other health care manpower issues; and 7. the emergence and growth of the concepts of health disparities and

cultural and linguistic competence.

My metaphors are HEALTH, defined as “the balance of the person, both within one’s being—physical, mental, and spiritual—and in the outside world— natural, communal, and metaphysical”; ILLNESS, “the imbalance of the person, both within one’s being—physical, mental, and spiritual—and in the outside world—natural, communal, and metaphysical”; and HEALING, “the restoration of balance, both within one’s being—physical, mental, and spiritual—and in the outside world—natural, communal, and metaphysical.” I have learned over these years that within many traditional heritages (defined as “old,” not con- temporary or modern) people tend to define HEALTH, ILLNESS, and HEALING in this manner. Imagine a kaleidoscope—the tube can represent HEALTH. The ob- jects reflected within the kaleidoscope reflect the traditional tools used to care for a given person’s HEALTH. If you love kaleidoscopes, you know what I am describing and that the patterns that emerge are infinite.

xii ■ Preface

In addition, I have had the unique opportunity to travel to countless places in the United States and abroad. I make it a practice to visit the tra- ditional markets, pharmacies, and shrines and dialogue with the people who work in or patronize the settings, and I have gathered invaluable knowledge and unique items and images. My tourist dollars are invested in amulets and remedies and my collection is large. Digital photography has changed my eyes; I may be a “digital immigrant,” rather than a “digital native,” but the camera has proven to be my most treasured companion. I have been able to use the im- ages of sacred objects and sacred places to create HEALTH Traditions Imagery. The opening images for each chapter and countless images within the chapters are the results of these explorations. Given that there are times when we do not completely understand a concept or an image, several images are slightly blurred or dark to represent this wonderment.

The first edition of this book was the outcome of a promesa—a promise— I once made. The promise was made to a group of Asian, Black, and Hispanic students I taught in a medical sociology course in 1973. In this course, the students wound up being the teachers, and they taught me to see the world of health care delivery through the eyes of the health care consumer rather than through my own well-intentioned eyes. What I came to see I did not al- ways like. I did not realize how much I did not know; I believed I knew a lot. I promised the students that I would take that which they taught me regarding HEALTH and teach it to students and colleagues. I have held on to the promesa, and my experiences over the years have been incredible. I have met people and traveled. At all times I have held on to the idea and goal of attempting to help nurses and other health care providers be aware of and sensitive to the HEALTH, ILLNESS, and HEALING beliefs and needs of their patients.

I know that looking inside closed doors carries with it a risk. I know that people prefer to think that our society is a melting pot and that the traditional beliefs and practices have vanished with the expected acculturation and assimi- lation into mainstream North American modern life. Many people, however, have continued to carry on the traditional customs and culture from their na- tive lands and heritage, and HEALTH, ILLNESS, and HEALING beliefs are deeply entwined within the cultural and social beliefs that people have. To understand HEALTH and ILLNESS beliefs and practices, it is necessary to see each person in his or her unique sociocultural world. The theoretical knowledge that has evolved for the development of this text is cumulative and much of the “old” material is relevant today as many HEALTH, ILLNESS, and HEALING beliefs do not change. However, many beliefs and practices do go underground.

The purpose of each edition has been to increase awareness of the dimen- sions and complexities involved in caring for people from diverse cultural back- grounds. I wished to share my personal experiences and thoughts concerning the introduction of cultural concepts into the education of health care profes- sionals. The books represented my answers to the questions:

■ “How does one effectively expose a student to cultural diversity?” ■ “How does one examine health care issues and perceptions from a

broad social viewpoint?”

Preface ■ xiii

As I have done in the classroom over the years, I attempt to bring you, the reader, into direct contact with the interaction between providers of care within the North American health care system and the consumers of health care. The staggering issues of health care delivery are explored and contrasted with the choices that people may make in attempting to deal with health care issues.

When I began this journey in nursing, there were limited resources avail- able to answer my questions and to support me in my passion for knowledge. The situation has dramatically changed and today there is nearly more informa- tion than one can absorb! Not only is this information being sought by nurses, all stakeholders in the health care industry are struggling with this concept. The de- mographics of America, and the world, have changed and perhaps this challenge of building bridges between cultural groups can be seen as a way to open op- portunities to do this in many disciplines. Indeed, the content is readily available:

■ Countless books and articles have been published in nursing, medicine, public health, and the popular media over the past 40 years that con- tain invaluable information relevant to CULTURALCOMPETENCY.

■ Innumerable workshops and meetings have been available where the content is presented and discussed.

■ “Self-study” programs on the Internet have been developed that pro- vide continuing education credits to nurses, physicians, and other providers.

However, the process of becoming CULTURALLYCOMPETENT is not generally provided for. Issues persist, such as:

■ Demographic disparity exists in the profile of health care providers and in health status.

■ Patient needs, such as modesty, space, and gender-specific care, are not universally met.

■ Religious-specific needs are not met in terms of meal planning, proce- dural planning, conference planning, and so forth.

■ Communication and language barriers exist.

As this knowledge is built, you are on the way to CULTURALCOMPETENCY. As it matures and grows, you become an advocate of CULTURALCARE, as it will be described in Chapter 1.

■ Overview Unit I focuses on the background knowledge one must recognize as the foun- dation for developing CULTURALCOMPETENCY.

■ Chapter 1 presents an overview of the significant content related to the on-going development of the concepts of cultural and linguistic com- petency as it is described by several different organizations.

■ Chapter 2 explores the concept of cultural heritage and history and the roles they play in one’s perception of health and illness. This exploration

xiv ■ Preface

is first outlined in general terms: What is culture? How is it transmit- ted? What is ethnicity? What is religion? How do they affect a person’s health? What major sociocultural events occurred during the life trajec- tory of a person that may influence his or her personal health beliefs and practices?

■ Chapter 3 presents a discussion of the diversity—demographic, im- migration, and poverty—that impacts on the delivery of and access to health care. The backgrounds of each of the U.S. Census Bureau’s cat- egories of the population, an overview of immigration, and an overview of issues relevant to poverty are presented.

■ Chapter 4 reviews the provider’s knowledge of his or her own percep- tions, needs, and understanding of health and illness.

Unit II explores the domains of HEALTH, blends them with one’s personal heritage, and contrasts them with the Allopathic Philosophy.

■ Chapter 5 introduces the concept of HEALTH and develops the con- cept in broad and general terms. The HEALTH Traditions Model is pre- sented, as are natural methods of HEALTH maintenance and protection.

■ Chapter 6 explores the concept of HEALTH restoration or HEALING and the role that faith plays in the context of HEALING, or magico-religious, traditions. This is an increasingly important issue, which is evolving to a point where the health care provider must have some understanding of this phenomenon.

■ Chapter 7 discusses family heritage and explores personal and familial HEALTH traditions. It includes an array of familial health/HEALTH be- liefs and practices shared by people from many different heritages.

■ Chapter 8 focuses on the health care provider culture and the allopathic health care delivery system.

Once the study of each of these components has been completed, Unit III (Chapters 9 to 13) moves on to explore selected population groups in more de- tail, to portray a panorama of traditional HEALTH and ILLNESS beliefs and prac- tices, and to present relevant health care issues.

Chapter 14 is devoted to an overall analysis of the book’s contents and how best to apply this knowledge in health care delivery, health planning, and health education, for both the patient and the health care professional.

Each chapter in the text opens with images relevant to the chapter’s topic. They may be viewed in the CULTURALCARE Museum on the accompanying web page.

These pages cannot do full justice to the richness of any one culture or any one health/HEALTH belief system. By presenting some of the beliefs and practices and suggesting background reading, however, the book can begin to inform and sensitize the reader to the needs of a given group of people. It can also serve as a model for developing cultural knowledge of populations that are not included in this text.

There is so much to be learned. Countless books and articles have now appeared that address these problems and issues. It is not easy to alter attitudes

Preface ■ xv

and beliefs or stereotypes and prejudices, to change a person’s philosophy. Some social psychologists state that it is almost impossible to lose all of one’s prejudices, yet alterations can be made. I believe the health care provider must develop the ability to deliver CULTURALCARE and knowledge regarding per- sonal fundamental values regarding health/HEALTH and illness/ILLNESS. With acceptance of one’s own values come the framework and courage to accept the existence of differing values. This process of realization and acceptance can enable the health care provider to be instrumental in meeting the needs of the consumer in a collaborative, safe, and professional manner.

This book is written primarily for the student in basic allied health profes- sional programs, nursing, medical, social work, and other health care provider disciplines. I believe it will be helpful also for providers in all areas of practice, especially community health, long-term oncology, chronic care settings, and geri- atric and hospice centers. I am attempting to write in a direct manner and to use language that is understandable by all. The material is sensitive, yet I believe that it is presented in a sensitive manner. At no point is my intent to create a vehicle for stereotyping. I know that one person will read this book and nod, “Yes, this is how I see it,” and someone else of the same background will say, “No, this is not correct.” This is the way it is meant to be. It is incomplete by intent. It is written in the spirit of open inquiry, so that an issue may be raised and so that clarifica- tion of any given point will be sought from the patient as health care is provided. The deeper I travel into this world of cultural diversity, the more I wonder at the variety. It is wonderfully exciting. By gaining insight into the traditional attitudes that people have toward health and health care, I found my own nursing practice was enhanced, and I was better able to understand the needs of patients and their families. It is thrilling to be able to meet, to know, and to provide care to people from all over the world and every walk of life. It is the excitement of nursing. As we go forward in time, I hope that these words will help you, the reader, develop CULTURALCARE skills and help you provide the best care to all.

You don’t need a masterpiece to get the idea. —Pablo Picasso

■ Features ■ Research on Culture and Health. As evidence-based practice grows

in importance, its application is expected in all aspects of health care. This special feature spotlights how current research informs and im- pacts cultural awareness and competence.

■ Unit and Chapter Objectives. Each unit and chapter opens with ob- jectives to direct the reader when studying.

■ Unit Exercises and Activities. The beginning of each unit provides ex- ercises and activities related to the topic. Questions stimulate reflective

xvi ■ Preface

consideration of the reader’s own family and cultural history as well as to develop an awareness of one’s own biases.

■ Figures, Tables, and Boxes. Throughout the book are photographs, illustrations, tables, and boxes that exemplify and expand on informa- tion referenced in the chapter.

■ Health Traditions Imagery. These symbolic images are used to link the chapters. The images were selected to awaken you to the richness of a given heritage and the practices inherent within both modern and tra- ditional cultures, as well as the beliefs surrounding health and HEALTH. (HEALTH, when written this way, is defined as the balance of the person, both within one’s being—physical, mental, spiritual—and in the outside world—natural, familial and communal, metaphysical.)

■ Keeping Up. Selected resources that present information that is fre- quently published in a timely manner to keep you abreast of data, on such topics as poverty, income, immigration, and so forth, as the facts and figures change. This is a new feature for this edition.

■ Supplemental Resources

■ CulturalCare Guide. Previously available as a separate booklet, the contents of this helpful guide are now available for downloading on the Companion Website. The guide includes the Heritage Assess- ment Tool, Cultural Phenomena Affecting Health Care, CulturalCare Etiquette, and other assessment tools and guides.

■ Companion Website. www.prenhall.com/spector. The Companion Website includes a wealth of supplemental material to accompany each chapter. In addition to the complete contents of the CulturalCare Guide, the site presents chapter-related review questions, case studies, exercises, and MediaLinks to provide additional information. Panorama of Health and Illness videos accompany many chapters, and a glossary of terms appears for each chapter. Also included is a collection of the author’s photographs and culturally significant images in the CULTURAL- CARE Museum.

■ Instructor’s Resource Center. Available to instructors adopting the book are PowerPoint Lecture Slides and a complete testbank available for downloading from the Instructor’s Resource Center, which can be accessed through the online catalog.

■ Online Course Management. Built to accompany Cultural Diversity in Health and Illness are online course management systems available for Blackboard, WebCT, Moodle, Angel, and other platforms. For more information, contact your Pearson Education sales representative.

www.prenhall.com/spector
About the Author

Dr. Rachel E. Spector has been a student of culturally diverse HEALTH and ILLNESS beliefs and practices for 40 years and has researched and taught courses on culture and HEALTH care for the same time span. Dr. Spector has had the opportunity to work in many different communities, including the American Indian and Hispanic communities in Boston, Massachusetts. Her studies have taken her to many places: most of the United States, Canada, and Mexico; several European countries, including Denmark, England, Greece, Finland, Iceland, Italy, France, Russia, Spain, and Switzerland; Israel and Pakistan; and Australia and New Zealand. She was fortunate enough to collect traditional amulets and remedies from many of these diverse communities, visit shrines, and meet practitioners of traditional HEALTH care in several places. She was in- strumental in the creation and presentation of the exhibit “Immigrant HEALTH Traditions” at the Ellis Island Immigration Museum, May 1994 through January 1995. She has exhibited HEALTH-related objects in several other set- tings. Recently, she served as a Colaboradora Honorifica (Honorary Collabora- tor) in the University of Alicante in Alicante, Spain, and Tamaulipas, Mexico. In 2006, she was a Lady Davis Fellow in the Henrietta Zold-Hadassah Hebrew University School of Nursing in Jerusalem, Israel. This text was translated into Spanish by Maria Munoz and published in Madrid by Prentice Hall as Las Cul- turas de la SALUD in 2003 and into Chinese in 2010. She is a Fellow in the American Academy of Nursing and a Scholar in Transcultural Nursing Society. The Massachusetts Association of Registered Nurses, the state organization of the American Nurses’ Association, honored her as a “Living Legend” in 2007. In 2008 she received the Honorary Human Rights Award from the American Nurses Association. This award recognized her contributions and accomplish- ments that have been of national significance to human rights and have influ- enced health care and nursing practice.

xvii

Acknowledgments

I have had a 35-year adventure of studying the forces of culture, ethnicity, and religion and their profound influence on HEALTH, ILLNESS, and HEALING beliefs and practices. Many, many people have contributed generously to the knowledge I have acquired over this time as I have tried to serve as a voice for traditional people and the HEALTH, ILLNESS, and HEALING beliefs and prac- tices derived from their given heritage. It has been a continuous struggle to in- sure that this information be included not only in nursing education but in the educational content of all helping professions—including medicine, the allied health professions, and social work.

I particularly wish to thank the following people for their guidance, professional support, and encouragement over the 32 years that this book, now in its eighth edition, has been an integral part of my life. They are peo- ple from many walks of life and have touched me in many ways. The people from Appleton-Century-Crofts, which became Appleton & Lang, then became Prentice Hall, and now Pearson. They include Kim Mortimer, Patrick Walsh, and countless people involved in the production of the text. My first encounter with publishing was with Leslie Boyer, an acquisition editor from Appleton- Century-Crofts, who simply said “write a book” in 1976. The experience of preparing this eighth edition has been a formidable one. Most of the new con- tent has been gathered via the World Wide Web. However, the most exciting aspect of this project has been working with people in India throughout the copyediting phase. I was living in Honolulu, Hawaii; the Senior Project Man- ager, Saraswathi Muralidhar, was in India. We were thousands of miles apart, there was a fifteen and one half-hour difference in time; yet, we have completed this challenge in a most timely manner. Yes, the World Wide Web is an amaz- ing asset. In 1976, when the first edition of this book was conceived, I never dreamt that this is where it would be in 2012. In addition, for this edition I have worked closely with Yagnesh Jani, the development editor in the United States. Without their help, this book would not be here today.

The many people who helped with advice and guidance to resources over the years include Elsi Basque, Billye Brown, Louise Buchanan, Julian Castillo, Leonel J. Castillo, Jenny Chan, Dr. P. K. Chan, Joe Colorado, Miriam Cook, Elizabeth Cucchiaro, Norine Dresser, Marjory Gordon, Orlando Isaza, Henry and Pandora Law, S. Dale McLemore, Anita Noble, Carl Rutberg, Sister Mary Nicholas Vincelli, David Warner, and the late Hawk Littlejohn, Father Richard McCabe, and Irving K. Zola.

I wish to thank my friends and family, who have tolerated my absence at countless social functions, and the many people who have provided the

xviii

Acknowledgments ■ xix

xix

numerous support services necessary for the completion of an undertaking such as this. My husband, Manny, has been the rock who has sustained and sup- ported me through all these years–most of all, I can never thank him enough.

A lot has happened in my life since the first edition of this book was pub- lished in 1979. My family has shrunk with the deaths of all four parents, and it has greatly expanded with a new daughter, Hilary, and a new son, Perry, and five granddaughters—Julia, Emma, Naomi, Rose, and Miriam. The generations have gone, and come.

■ Reviewers Michelle Gagnon, BS, RUT, RDCS Bunker Hill Community College Boston, MA

Marie Gates, PhD WMU Bronson School of Nursing Kalamazoo, MI

Janette McCrory, MSN Delta State University Cleveland, MS

Anita Noble, DNSc Hebrew University School of Nursing, Henrietta Zold-Hadassah School of Nursing Jerusalem, Israel

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1

Unit

1

Cultural Foundations

Unit I creates the foundation for this book and enables you to become aware of the importance of developing knowledge in the topics of (1) cultural and linguistic competency; (2) cultural heritage and history—both your own and those of other people; (3) diversity—demographic, immigration, and economic; and (4) the standard concepts of health and illness.

The chapters in Unit I will present an overview of relevant historical and contemporary theoretical content that will help you climb the first three steps to CULTURALCOMPETENCY. You will:

1. Understand the compelling need for the development of cultural and lin- guistic competency.

2. Identify and discuss the factors that contribute to heritage consistency— culture, ethnicity, religion, acculturation, and socialization.

3. Identify and discuss sociocultural events that may influence the life trajec- tory of a given person.

4. Understand diversity in the population of the United States by observing ■ Census 2010 and the demographic changes in the population of the

United States over several decades; ■ immigration patterns and issues; and ■ economic issues relevant to poverty.

5. Understand health and illness and the sociocultural and historical phenom- ena that affect them.

I

2 ■ Unit 1

6. Reexamine and redefine the concepts of health and illness. 7. Understand the multiple relationships between health and illness.

Before you read Unit I, please answer the following questions:

1. Do you speak a language other than English? 2. What is your sociocultural heritage? 3. What major sociocultural events have occurred in your lifetime? 4. What is the demographic profile of the community you grew up in? Has it

changed; if so, how has it changed? 5. How would you acquire economic help if necessary? 6. How do you define health? 7. How do you define illness? 8. What do you do to maintain and protect your health? 9. What do you do when you experience a noticeable change in your health? 10. Do you diagnose your own health problems? If yes, how do you do so? If

no, why not? 11. From whom do you seek health care? 12. What do you do to restore your health? Give examples.

3

Chapter 1 Building Cultural and

Linguistic Competence

When there is a very dense cultural barrier, you do the best you can, and if something happens despite that, you have to be satisfied with little success instead of total successes. You have to give up total control. . . .

—Anne Fadiman (2001)

■ Objectives

1. Discuss the underpinnings of the need for cultural and linguistic competence. 2. Describe the National Standards for Culturally and Linguistically Appropri-

ate Services in Health Care. 3. Describe institutional mandates regarding cultural and linguistic

competence. 4. Articulate the attributes of CULTURALCOMPETENCY and CULTURALCARE.

The opening images for this chapter depict the foundations for the building of CULTURALCOMPETENCE. The first image is that of a dandelion that has gone to seed (Figure 1–1). All of the seeds are united, yet each is a discrete entity—they represent the numerous facets necessary for cultural competence. Figure 1–2 is that of a “fake door” in Vejer de la Frontera, Spain. It is a reminder of personal beliefs that shut out all other arguments and ways of understanding people. Figure 1–3 is a translucent door in Avila, Spain, where it is possible to look into a different reality and because it is not locked—one can open it and recognize

Figure 1–1 Figure 1–2 Figure 1–3 Figure 1–4

4 ■ Chapter 1

the view of others. Figure 1–4 represents the steps to cultural competency. A more detailed discussion of each image follows in the forthcoming text.

In May 1988, Anne Fadiman, editor of The American Scholar, met the Lee family of Merced, California. Her subsequent book, The Spirit Catches You and You Fall Down, published in 1997, tells the compelling story of the Lees and their daughter, Lia, and their tragic encounter with the American health care delivery system. This book has now become a classic and is used by many health care educators and providers in situations where there is an effort to demonstrate the need for developing cultural competence.

When Lia was 3 months old, she was taken to the emergency room of the county hospital with epileptic seizures. The family was unable to communicate in English; the hospital staff did not include competent Hmong interpreters. From the parents’ point of view, Lia was experiencing “the fleeing of her soul from her body and the soul had become lost.” They knew these symptoms to be quag dab peg—“the spirit catches you and you fall down.” The Hmong re- garded this experience with ambivalence, yet they knew that it was serious and potentially dangerous, as it was epilepsy. It was also an illness that evokes a sense of both concern and pride.

The parents and the health care providers both wanted the best for Lia, yet a complex and dense trajectory of misunderstanding and misinterpreting was set in motion. The tragic cultural conflict lasted for several years and caused considerable pain to each party (Fadiman, 2001). This moving incident exem- plifies the extreme events that can occur when two antithetical cultural belief systems collide within the overall environment of the health care delivery sys- tem. Each party comes to a health care event with a set notion of what ought to happen—and, unless each is able to understand the view of the other, complex difficulties can arise.

The catastrophic events of September 11, 2001; the wars in Iraq, Afghanistan, and Libya; the countless natural disasters such as Hurricane Katrina and the earthquakes in Haiti and Japan; and our preoccupation with terrorist threats have pierced the consciousness of all Americans in general and health care providers in particular. Now, more than ever, providers must be- come informed about and sensitive to the culturally diverse subjective meanings of health/HEALTH,1 illness/ILLNESS, caring, and curing/HEALING practices. Cultural diversity and pluralism are a core part of the social and economic en- gines that drive the country, and their impact at this time has significant impli- cations for health care delivery and policymaking throughout the United States (Office of Minority Health, 2001, p. 25).

1This style of combining terms, such as health/HEALTH, will be used throughout the text to con- vey that there is a blending of modern and traditional connotations for the terms. The terms are de- fined within the text and in the glossary. Furthermore, when terms such as CULTURALCOMPETENCY and CULTURALCARE and others are written in all capital letters, it is done so to imply that they are referring to a holistic philosophy, rather than a dualistic philosophy.

Building Cultural and Linguistic Competence ■ 5

In all clinical practice areas—from institutional settings, such as acute and long-term care settings, to community-based settings, such as nurse practitioners’ and doctors’ offices and clinics, schools and universities, pub- lic health, and occupational settings—one observes diversity every day. The undeniable need for culturally and linguistically competent health care services for diverse populations has attracted increased attention from health care pro- viders and those who judge their quality and efficiency for many years. The mainstream health care provider is treating a more diverse patient population as a result of demographic changes and participation in insurance programs, and the interest in designing culturally and linguistically appropriate services that lead to improved health care outcomes, efficiency, and patient satisfaction has increased.

One’s personal cultural background, heritage, and language have a con- siderable impact on both how patients access and respond to health care services and how the providers practice within the system. Cultural and linguistic com- petence suggests an ability of health care providers and health care organiza- tions to understand and respond effectively to the cultural and linguistic needs brought to the health care experience. This is a phenomenon that recognizes the diversity that exists among the patients, physicians, nurses, and caregivers. This phenomenon is not limited to the changes in the patient population in that it also embraces the members of the workforce—including providers from other countries. Many of the people in the workforce are new immigrants and/or are from ethnocultural backgrounds that are different from that of the dominant culture.

In addition, health and illness can be interpreted and explained in terms of personal experience and expectations. We can define our own health or illness and determine what these states mean to us in our daily lives. We learn from our own cultural and ethnic backgrounds how to be healthy, how to recognize illness, and how to be ill. Furthermore, the meanings we attach to the notions of health and illness are related to the basic, culture-bound values by which we define a given experience and perception.

It is now imperative, according to the most recent policies of the Joint Commission of Hospital Accreditation and the Centers for Medicare & Med- icaid Services, that all health care providers be “culturally competent.” In this context, cultural competency implies that within the delivery of care the health care provider understands and attends to the total context of the patient’s situa- tion; it is a complex combination of knowledge, attitudes, and skills, yet

■ How do you really inspire people to hear the content? ■ How do you motivate providers to see the worldview and lived experi-

ence of the patient? ■ How do you assist providers to really bear witness to the living condi-

tions and lifeways of patients? ■ How do you liberate providers from the burdens of prejudice, xenopho-

bia, the “isms”—racism, ethnocentrism—and the “antis” such as anti- Semitism, anti-Catholicism, anti-Islamism, anti-immigrant, and so forth?

6 ■ Chapter 1

■ How do you inspire philosophical changes from dualistic thinking to holistic thinking?

It can be argued that the development of CULTURALCOMPETENCY does not occur in a short encounter with programs on cultural diversity but that it takes time to develop the skills, knowledge, and attitudes to safely and sat- isfactorily become “CULTURALLYCOMPETENT” and to deliver CULTURALCARE. Indeed, the reality of becoming “CULTURALLYCOMPETENT” is a complex process—it is time consuming, difficult, frustrating, and extremely interesting. It is a philosophical change wherein the CULTURALLYCOMPETENT person is able to hear, understand, and respect the nonverbal and/or non-articulated needs and perspectives of a given patient.

CULTURALCOMPETENCY embraces the premise that all things are con- nected. Look again at the dandelion that has gone to seed. Each seed is a dis- crete entity, yet each is linked to the other (Figure 1–1). Each facet discussed in this text—heritage, culture, ethnicity, religion, socialization, and identity— is connected to diversity, demographic change, population, immigration, and poverty. These facets are connected to health/HEALTH, illness/ILLNESS, curing/HEALING, and beliefs and practices, modern and traditional. All of these facets are connected to the health care delivery system—the culture, costs, and politics of health care, the internal and external political issues, public health is- sues, and housing and other infrastructure issues. In order to fully understand a person’s health/HEALTH beliefs and practices, each of these topics must be in the background of a provider’s mind.

I have had the opportunity to live and teach in Spain and to explore many areas, including Cadiz and the surrounding small villages. There was a fake door within the walls of a small village, Vejer de la Frontera (Figure 1–2), that appeared to be bolted shut. The door was placed there during the early 14th century to fool the Barbary pirates. The people were able to vanquish them while they tried to pry the door open. It reminded me of the attempt to keep other ideas and people away and not open up to new and different ideas. Another door (Figure 1–3), found in Avila, Spain, was made of translu- cent glass. Here, the person has a choice—peer through the door and view the garden behind it or open it and actually go into the garden for a finite walk. This reminded me of people who are able to understand the needs of others and return to their own life and heritage when work is completed. This polarity represents the challenges of “CULTURALCOMPETENCY.”

The way to CULTURALCOMPETENCY is complex, but I have learned over the years that there are five steps (Figure 1–4) to climb to begin to achieve this goal:

1. Personal heritage—Who are you? What is your heritage? What are your health/HEALTH beliefs?

2. Heritage of others—demographics—Who is the other? Family? Community?

3. Health and HEALTH beliefs and practices—competing philosophies 4. Health care culture and system—all the issues and problems

Building Cultural and Linguistic Competence ■ 7

5. Traditional HEALTH care systems—the way HEALTH was for most and the way HEALTH still is for many

Once you have reached the sixth step, CULTURALCOMPETENCY, you are ready to open the door to CULTURALCARE.

Each step represents a discrete unit of study, each building upon the one below it. The steps have been constructed with “bricks,” and they represent the fundamental terms, or language, of the content. Table 1–1 lists many examples

Table 1–1 Bricks: Selected CULTURALCARE Terms

Access Acupuncture Ageism Alien Allopathic philosophy Amulet Apparel Assimilation Bankes Borders Calendar Care Census Citizen CLAS Community Costs Cultural conflict CULTURALCARE CULTURALCOMPETENCY Culturally appropriate Culturally competent Culturally sensitive Culture Curandera/o Customs Cycle of poverty Demographic disparity Demographic parity Demography Diagnosis Diversity Documentation Education Empacho Envidia Ethics Ethnicity Ethnicity Ethnocentrism Evil eye Family Financing Food Garments Gender specific care Green Card Gris-gris Habits Halal HEALING Health HEALTH Health care system Health disparities HEALTH Traditions Healthy People 2020 Herbalist Heritage Heritage consistency Heritage inconsistency

Heterosexism Hex Homeland security

Homeopathic philosophy

Homophobia Iatrogenic Illness

ILLNESS Immigration Kosher Language Law Legal Permanent

Resident (LPR) Life trajectory Limpia

Linguistic competence Literacy Mal ojo Manpower Meridians Migrant labor Milagros Modern Modesty Morbidity Mortality Naturalization Office of Minority Health

Orisha Osteopathy Partera

Pasmo Politics Poverty Poverty guidelines Powwow Procedures Promesa Quag dab peg Racism Reflexology Refugee Religion Remedies Sacred objects Sacred places Sacred practices Sacred spaces Sacred times Santera/o Senoria Sexism Silence Silence Singer Socialization Spell Spirits Spiritual Spirituality Title VI Traditional Undocumented person Visitors Voodoo Vulnerability Welfare Worldview Xenophobia Yin &Yang Yoruba

8 ■ Chapter 1

of the bricks and the terms are used in the following chapters as appropriate and most are defined in the Key Terms list in Appendix A. These selected terms and many more are the evolving language or jargon of CULTURALCARE.

The railings represent “responsibility and resiliency”—for it is the respon- sibility of health care providers to be CULTURALLYCOMPETENT and, if this is not met, the consequences will be dire. The resiliency of providers and patients will be further compromised and we will all become more vulnerable. Contrary to popular belief and practice, CULTURALCOMPETENCY is not a “condition” that is rapidly achieved. Rather, it is an ongoing process of growth and the develop- ment of knowledge that takes a considerable amount of time to ingest, digest, assimilate, circulate, and master. It is, for many, a philosophical change in that they develop the skills to understand where a person from a different cultural background than theirs is coming from.

This discussion now presents an overview of the significant content re- lated to the ongoing development of the concepts of cultural and linguistic competency as they are described by several different organizations. Presently, there has been a proliferation of resources related to this content and a discus- sion of selected items is included here. Box 1–2, at the conclusion of the chap- ter, lists numerous resources.

■ National Standards for Culturally and Linguistically Appropriate Services in Health Care

In 1997, the Office of Minority Health undertook the development of national standards to provide a much needed alternative to the patchwork that has been undertaken in the field of cultural diversity. It developed the National Stan- dards for Culturally and Linguistically Appropriate Services (CLAS) in Health Care. These 14 standards (Box 1–1) must be met by most health care-related agencies. The standards are based on an analytical review of key laws, regula- tions, contracts, and standards currently in use by federal and state agencies and other national organizations. Published in 2001, the standards were developed with input from a national advisory committee of policymakers, health care pro- viders, and researchers. The CLAS standards are primarily directed at health care organizations. The principles and activities of culturally and linguistically appropriate services must be integrated throughout an organization and imple- mented in partnership with the communities being served. Enhanced standards are currently being developed but are not yet available. The new standards, National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care: A Blueprint for Advancing and Sustaining CLAS Pol- icy and Practice will be available at https://www.thinkculturalhealth.hhs.gov/.

Accreditation and credentialing agencies can assess and compare provid- ers who say they provide culturally competent services and assure quality care for diverse populations. This includes the Joint Commission on Accreditation of Healthcare Organizations (JCAHO); the National Committee on Quality

https://www.thinkculturalhealth.hhs.gov/
Building Cultural and Linguistic Competence ■ 9

Box 1–1

Office of Minority Health’s Recommended* National Standards for

Culturally and Linguistically Appropriate Services in Health Care

The Fundamentals of Culturally Competent Care 1. Health care organizations should ensure that patients/consumers receive

from all staff members effective, understandable, and respectful care that is provided in a manner compatible with their cultural health beliefs and practices and preferred language.

2. Health care organizations should implement strategies to recruit, retain, and promote at all levels of the organization a diverse staff and leadership that are representative of the demographic characteristics of the service area.

3. Health care organizations should ensure that staff at all levels and across all disciplines receive ongoing education and training in culturally and linguisti- cally appropriate service delivery.

Speaking of Culturally Competent Care 4. Health care organizations must offer and provide language assistance

services, including bilingual staff and interpreter services, at no cost to each patient/consumer with limited English proficiency at all points of contact, in a timely manner during all hours of operation.

5. Health care organizations must provide to patients/consumers in their preferred language both verbal offers and written notices informing them of their right to receive language assistance services.

6. Health care organizations must assure the competence of language assistance provided to limited English-proficient patients/consumers by interpreters and bilingual staff. Family and friends should not be used to pro- vide interpretation services (except on request by the patient/consumer).

7. Health care organizations must make available easily understood patient- related materials and post signage in the languages of the commonly encountered groups and/or groups represented in the service area.

8. Health care organizations should develop, implement, and promote a writ- ten strategic plan that outlines clear goals, policies, operational plans, and management accountability/oversight mechanisms to provide culturally and linguistically appropriate services.

Structuring Culturally Competent Care 9. Health care organizations should conduct initial and ongoing organizational

self-assessments of CLAS-related activities and are encouraged to integrate cultural and linguistic competence–related measures into their internal au- dits, performance improvement programs, patient satisfaction assessments, and outcomes-based evaluations.

(continued)

10 ■ Chapter 1

Assurance; professional organizations, such as the American Medical Associa- tion and the American Nurses Association; the Transcultural Nursing Society; and quality review organizations, such as peer review organizations.

In order to ensure both equal access to quality health care by diverse populations and a secure work environment, all health care providers must “promote and support the attitudes, behaviors, knowledge, and skills necessary for staff to work respectfully and effectively with patients and each other in a culturally diverse work environment” (Office of Minority Health, 2001, p. 7). This is the first and fundamental standard of the 14 standards that have been recommended as national standards for CLAS in health care.

10. Health care organizations should ensure that data on the individual patient’s/ consumer’s race, ethnicity, and spoken and written language are collected in health records, integrated into the organization’s management information systems, and periodically updated.

11. Health care organizations should maintain a current demographic, cultural, and epidemiological profile of the community as well as a needs assessment to accurately plan for and implement services that respond to the cultural and linguistic characteristics of the service area.