Caring for the vulnerable perspectives in nursing theory, practice, and research, fifth edition

The editors present clinicians with a much needed resource that carefully addresses the unique challenges of advanced practice nurses who are in a position to care for a variety of vulne

MARY DE CHESNAY , PHD, RN, PMHCNS-BC, FAAN

Retired Professor, WellStar School of Nursing, Kennesaw State University, Kennesaw, Georgia

Professor Emerita, Frontier Nursing University, Hyden, KentuckyVulnerable

CARING FOR THE

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Library of Congress Cataloging-in-Publication Data

Names: De Chesnay, Mary, author | Anderson, Barbara A., 1948- author.

Title: Caring for the vulnerable : perspectives in nursing theory, practice,

and research / Mary de Chesnay, Barbara A Anderson.

Description: Fifth edition | Burlington, Massachusetts : Jones & Bartlett

Learning, [2020] | Includes bibliographical references and index.

Identifiers: LCCN 2018036792 | ISBN 9781284146813 (paperback)

Subjects: LCSH: Nursing Social aspects | Transcultural nursing |

Nursing Cross-cultural studies | Nursing Philosophy | BISAC: MEDICAL /

Nursing / Home & Community Care.

Classification: LCC RT86.5 C376 2020 | DDC 610.73 dc23 LC record available at https://lccn.loc.gov/2018036792

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Rights & Media Specialist: John Rusk Media Development Editor: Troy Liston Cover Image (Title Page, Part Opener, Chapter Opener): © RichLegg/E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images; © MachineHeadz/ iStock/ Getty Images; © Johnrob/ E+/ Getty Images; © Bartosz Hadyniak/ E+/ Getty Images Printing and Binding: McNaughton & Gunn

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To Donna Chambers, APRN, an exemplary nurse whose commitment to the vulnerable people she cares for and about is an inspiration.

Preface viii Foreword ix Acknowledgments x

Afterword xii Contributors xiii

Chapter 1 Vulnerable Populations: Vulnerable People .3

Mary de Chesnay

Chapter 2 Advocacy Role of Providers .17

Mary de Chesnay and Vanessa Robinson-Dooley

Chapter 3 Intersection of Racial Disparities and Privilege

Pamela J Evans and Mary de Chesnay

Chapter 7 Applying Middle-Range Concepts and Theories

to the Care of Vulnerable Populations .71

Nicole Mareno

Contents

iv

Chapter 8 Resilience in Health Care and Relevance to

Successful Rehabilitation Among Registered Nurses with Substance Use Disorders 91

Sara Rowan and Jason Smith

Chapter 9 Afghan Women Refugees: Application

of Intersectionality Feminist Theory 97

Chapter 12 Validation of Fluid Intake Tracking System

Designed for Heart Failure Patients 135

Kelly Dunn

Chapter 13 A Systematic Review of Cardiomyopathy and

Peripartum Mortality in the United States 151

Andrew Youmans

Chapter 14 Life Beyond Movement: A Life History of

a Male Quadriplegic 161

Amanda P Knowles, Anny Sosebee, and Edwige Goby Konwo Tayo

Chapter 15 Overcoming Breastfeeding Challenges:

A Case Study 171

Lauren Sillery Oberg

Chapter 16 Adult Family Relationships After Childhood

Maltreatment and Parental Substance Use or Mental Disorder: Pursuing an Ethics of Care 187

Elise J Matthews

Chapter 17 HIV Prevention Education 197

Alexander Giles

UNIT III Practice and Programs 209

Chapter 18 Obstetric Fistula: The Cost to Child Brides 211

Jessica Ellis, Laura Elledge, and Mary de Chesnay

Chapter 19 Caring for the Transgender Community 219

Amy P Roach

Chapter 20 Developing Population-Based Programs for

the Vulnerable 229

Anne Watson Bongiorno and Mary de Chesnay

Chapter 21 The Hepatitis C Epidemic: Outreach and

Intervention for Boomers 239

Gregory Grevera and Karen Hande

Chapter 22 Trauma-Informed Primary Care: Promoting Change

Among Patients with Early Life Adversity 247

Tracey Wiese

Chapter 23 Opioid Abuse and Diversion Prevention

in Rural Eastern Kentucky 257

Tricia Flake

Chapter 24 Culturally Contextualized Community Outreach

Program to Promote Breastfeeding Among African American Women 267

Rachel Simmons

Chapter 25 Strangulation Related to Intimate Partner

Violence: Caring for Vulnerable Women in the Emergency Department 277

Jeanne Parrish

Chapter 26 The Effects of Gun Trauma on Rural Montana

Healthcare Providers 291

Margaret Anne Bortko

UNIT IV Teaching and Learning 303

Chapter 27 Teaching Nurses About Vulnerable Populations 305

Mary de Chesnay

Chapter 28 Caring for Vulnerable Populations: Outcomes

with the DNP-Prepared Nurse 315

Barbara A Anderson and Gwendolyn Short

Chapter 29 Vulnerability and Resilience: Teaching Students

in Low-Resource and Culturally Unfamiliar Settings 325

Barbara A Anderson and Jennifer Foster

Chapter 30 Health Care in Mexico 333

Camille Payne and Genie E Dorman

Chapter 31 Honors Capstone: Preparing Grant Content for

The Hope Box 341

Chapter 33 Facing the Nursing Workforce Shortage: Policies and

Initiatives to Promote a Resilient Healthcare System 363

Barbara A Anderson

Chapter 34 The Implementation of the Strong Start for Mothers

and Newborns Initiative in Freestanding Birth Centers 373

Jill Alliman and Susan Rutledge Stapleton

Chapter 35 Protecting Vulnerable Populations from Mosquito-

Borne Diseases: The Cases of Yellow Fever and Zika 387

Pauline Herold Tither

Chapter 36 The Link Between Animal Abuse and

Interpersonal Violence 403

Kathryn Bruno

Commentary 426

Mary de Chesnay

Chapter 37 Long After Allende and Pinochet: Uncovering

Vulnerability in Political History—Method and Agency 427

Ricardo A Ayala, Markus Thulin, and Rocio Elizabeth Núñez

Chapter 38 Aging in Place Policy 443

Diane L Keen

Index 453

For the Fifth Edition, we have retained material from previous editions that we consider basic,

such as definitions, cultural competence, social justice, and health literacy We have updated chapters on basic concepts and theories, programs, teaching and learning, and health policy Based on feedback from faculty who use the book, we understand that the book is now used exten-sively in DNP programs, so we have recruited more authors from such programs and included case studies relevant to advanced practice nursing and administration for appropriate chapters The new instructor guide includes material for all levels because the course is still offered for undergraduates

viii

Cheryl Tatano Beck, DNSc, CNM, FAAN

This is a landmark book that should be read around the world For far too long, vulnerable lations across the globe have not received the attention that they so sorely need Mary de Chesnay and Barbara A Anderson have written a text that clinicians and academics have been waiting for This book will bring visibility to the welfare of vulnerable populations around the world The ma-terial in this book is well researched, sensitively delivered, and essential, not only for nurses but also for all clinicians caring for vulnerable persons The editors present clinicians with a much needed resource that carefully addresses the unique challenges of advanced practice nurses who are in a position to care for a variety of vulnerable populations

popu-As a society, we need to pay much more attention to caring for our vulnerable populations The numbers of persons in vulnerable populations around the world are increasing and not decreasing

The fifth edition of Mary de Chesnay and Barbara A Anderson’s Caring for the Vulnerable:

Perspec-tives in Nursing Theory, Practice, and Research addresses the major issues of concepts and theories,

research, practice and programs, teaching and learning, and policy in regard to caring for vulnerable populations This latest edition is a must have not just for nurses but for all healthcare providers be-cause it is a scholarly and authoritative book edited by the leading experts in vulnerable populations The scope of issues covered in this book is impressive Chapter topics range from undocumented immigrants to victims of gun violence, intimate partner violence, child maltreatment, hepatitis C, child abuse, transgender patients, abandoned infants, migrant workers, sex trafficking, cardiomy-opathy, and pandemics, such as Zika The settings of vulnerable populations addressed in this text are expansive, ranging from rural America to emergency departments to developed and develop-ing countries So many vulnerable persons are in need of our help

Some chapters of this book specifically address nursing, such as the ones focusing on social justice, strangulation related to intimate partner violence, and victims of domestic minor sex traf-

in-ficking However, this fifth edition of Caring for the Vulnerable enhances the work of practitioners,

researchers, educators, theorists, and policy makers in all healthcare professions

This book is not just a scholarly text but also a valuable manual that represents a particular nacle of achievement within this field I have little doubt this book will be read by many advanced practice nurses and other clinicians who will find the information in it extremely valuable and its message inspirational The book will have an incredible impact on the care delivered by advanced practice nurses to make a significant difference in the lives of vulnerable persons worldwide Thank you to the editors for your enduring passion to improve the lives of these long-forgotten people

pin-ix

This book is a reflection of many people’s talents—first among them, both the new and returning contributing authors That social justice and care for the vulnerable is a universal phenomenon among nurses is reinforced when we attend professional meetings and when we travel to our own fieldwork sites and see social justice in action in some of the world’s poorest communities It is in-spiring to hear these authors speak and an honor to provide a forum for all who read this book to hear about their work We are deeply grateful to those scholars and practitioners around the world who contributed to this work

There are always technical support people who labor quietly behind the scenes of any lished venture The editors and staff at Jones & Bartlett Learning made sure the work was published

pub-in a timely manner We are grateful to Amanda Martpub-in for her leadership and Rebecca Stephenson for her attention to detail Anna-Maria Forger was vital to the success of this book by spending un-told hours editing

The wonderful staff at Kennesaw State University, especially Lindsey MacKenzie, are always supportive and helpful Two graduate students developed most of the material for the Instruc-tor Resource Manual M’Lyn Spinks enthusiastically wrote items and Dr Brenda Brown success-fully completed her dissertation during the process of producing the Instructor Resource Manual.Finally, and perhaps most importantly, the editors would like to thank all the vulnerable yet resilient people with whom they have worked during their many years of clinical practice and ed-ucation Working in every corner of the world, the editors encountered, time and time again, the strength of the human spirit and generosity of nature among people who have no reason to wel-come strangers, yet who shared what they had and took the time to teach us about their cultures

Mary de Chesnay Barbara A Anderson

x

Mary de Chesnay, PhD, RN, PMHCNS-BC, FAAN, is a retired professor of nursing at Kennesaw State

University and former secretary of the Council on Nursing and Anthropology (CONAA) of the ciety for Applied Anthropology (SFAA) Her clinical practice and research programs involve mostly women and children who have been abused or trafficked She has conducted ethnographic fieldwork and participatory action research in Latin America and the Caribbean She has taught a course in vulnerable populations and qualitative research at all levels in the United States and abroad in the roles of faculty, head of a department of research, dean, and endowed chair

So-Barbara A Anderson, DrPH, RN, CNM, FACNM, FAAN, Professor Emerita, Frontier Nursing

University, led the DNP program for 5 years She currently serves on the program committee, CONAA, SFAA Her clinical practice and research has been on maternal health issues and nurs-ing workforce issues She has published many articles and a number of books on these topics She has worked with vulnerable populations in over 114 countries in public health program design and evaluation, nurse-midwifery, and the education of health professionals

About the Editors

xi

Being human, it is likely that each of us have felt vulnerable at some time in our lives But what is different between us and others who have been identified as being “vulnerable” in society? Who are the vulnerable people and populations? What do we know about their lives, experiences, and needs? How can we, as nurses, address their vulnerability and implement strategies that address their healthcare needs?

Caring for the Vulnerable: Perspectives in Nursing Theory, Practice, and Research by Dr Mary

de Chesnay and Barbara A Anderson addresses these questions and resourcefully introduces its

readers to the meaning of vulnerability, not only from the traditional population-based viewpoint,

but also from individual, group, and community perspectives Each chapter illustrates how nurses, through their daily practice, can lead initiatives aimed to improve the health of the vulnerable from

a global perspective Nurses are called to address vulnerability through their expertise as teachers, practitioners, researchers, and/or policy advocates

This book introduces readers to many instances in which individuals are vulnerable, some more than others, simply because of their demographic backgrounds (race/ethnicity, age, and gender), where they live (or do not live), heath literacy, insurance coverage, immigration status, lifestyle, and/or socioeconomic situations Others are deemed vulnerable because of their physiological and/or psychological conditions and/or the lack of social support Interestingly, nurses can also be among the vulnerable and subjected to its consequences such as violence and addiction

Recognizing the vulnerable and those at risk for being vulnerable is just the first step addressed

in this book Readers learn about a diverse array of programs and solutions aimed to better stand the needs of the vulnerable, identify those most at risk for being vulnerable, and prevent and/or address the consequences of being vulnerable For example, nurse authors share their policy expertise by advocating for the vulnerable to effect policy change Nurse researchers explore frame-works and models to better understand the vulnerable and guide inquiry to build the resiliency of the vulnerable and address negative issues associated with vulnerability such as bullying, addiction, and violence Nurse educators share creative teaching-learning strategies they have used to inform their peers about the vulnerable and to prepare a future nursing workforce about caring for the vulnerable using experiential learning activities in study abroad programs and regional fieldwork

under-In summary, Caring for the Vulnerable provides readers with a wealth of information to help

them recognize those who are vulnerable and utilize their expertise to address health disparities and their consequences The value of nurses’ advocacy, research, practice, and teaching talents are essential to reduce disparities and promote social justice

Joan Such Lockhart, PhD, RN, AOCN, CNE, ANEF, FAAN

Clinical Professor Duquesne University School of Nursing

Pittsburgh, PA

xii

State University of New York Plattsburgh

Margaret Anne Bortko, FNP, DNP

Family Nurse Practitioner

Blue Hill Family Medicine

Doris M Boutain, PhD, RN, PHNA-BC

John and Marguerite Walker Corbally

Professor in Public Service

Associate Professor

University of Washington School of Nursing

Brenda Brown, RN, BSN, MS, DNS, CNE

Part-Time Nursing Faculty Member

Kennesaw State University

Kathryn Bruno, BSN, RN

Graduate

Kennesaw State University

Sr Rosemary Donley, PhD, APRN, FAAN

Professor of Nursing and the Jacques Laval

Chair for Justice for Vulnerable Populations

Kelly Dunn, MSN, NP-C, CCRN

Acute Care Cardiology Nurse PractitionerPiedmont Heart Institute

Laura Elledge, MSN, APRN, FNP-C

Multiple Sclerosis Center of Atlanta

Jessica Ellis, PhD, CNM

Assistant Professor University of Utah

Christie Emerson, DNS, RN, FNP

Senior LecturerClinical Agency Liaison and BSN Part-Time Faculty Coordinator

Kennesaw State University

Pamela J Evans, MSN, CCRN

Polk Medical Center

Tricia Flake, DNP, FNP-C

Spencer Family Medicine

Jennifer Foster, PhD, CNM, MPH, FACNM, FAAN

Clinical Professor of NursingEmory University

Elizabeth G Giganti, BSN, RN

Registered NurseChildren’s Healthcare of Atlanta

Alexander Giles, DNP, APRN

Clinical Assistant ProfessorKennesaw State University

xiii

Gregory Grevera, DNP, FNP-BC, AACRN

Jazz Pharmaceuticals

Karen Hande, DNP, ANP-BC, CNE

Associate Professor of Nursing

Vanderbilt University School of Nursing

Diane L Keen, DNS, RN, CNE

Clinical Assistant Professor

Kennesaw State University

WellStar School of Nursing

Amanda P Knowles, MSN, RN

Nurse Practitioner

Joan Such Lockhart, PhD, RN, AOCN, CNE, ANEF, FAAN

Clinical Professor and MSN Nursing

Education Track Coordinator

Duquesne University School of Nursing

Rocio Elizabeth Núñez, PhD

University of Santiago de Chile

School of Nursing

Chile

Lauren Sillery Oberg, MSN, APRN

Nurse Practitioner

Pamela H Ograbisz, DNP, APRN

Director of Telehealth for LocumTenens.com

and Jackson Healthcare

Jeanne Parrish, DNP, LNP, FNP-C, EMT-P

Forensics Coordinator/Nurse Practitioner

University of Virginia Medical Center

Forensics Team

Camille Payne, PhD, RN

Professor of NursingKennesaw State University

Gwendolyn Short, DNP, MPH, APRN, FNP-BC

Director, Nurse Practitioner Program

St Catherine University

Rachel Simmons, DNP-C

Community Health Center

Jason Smith, MSN, APRN

Nurse Practitioner

Anny Sosebee, RN, BSN, MSN

Nurse Practitioner

Susan Rutledge Stapleton, CNM, DNP, FACNM

Research Committee ChairAmerican Association of Birth Centers

Edwige Goby Konwo Tayo, MSN, RN

Nurse Practitioner

Markus Thulin, PhD

University of CologneInstitute for Iberian and Latin-American History

Germany

Pauline Herold Tither, DNP, MBA, RN, CNP

Family Nurse Practitioner

Tracey Wiese, DNP, FNP, PMHNP, SANE-A Andrew Youmans, MSN, RN, CNM, CPEN, FAWM

Nurse ClinicianEmory Healthcare

UNIT I

Concepts and Theories

Our greatest glory is not in never falling, but in rising every time you fall.

—Confucius

CHAPTER 1 Vulnerable Populations: Vulnerable People 3 CHAPTER 2 Advocacy Role of Providers 17 CHAPTER 3 Intersection of Racial Disparities

and Privilege in Women’s Health 29 CHAPTER 4 Social Justice in Nursing: A Review

of the Literature 39 CHAPTER 5 Health Literacy: Through the Lens

of One Provider 55 CHAPTER 6 Bullying 63 CHAPTER 7 Applying Middle-Range Concepts

and Theories to the Care of Vulnerable Populations 71

© Bartosz Hadyniak/ E+/ Getty Images

© RichLegg/ E+/ Getty Images

CHAPTER 8 Resilience in Health Care and Relevance to Successful

Rehabilitation Among Registered Nurses with Substance Use Disorders 91 CHAPTER 9 Afghan Women Refugees: Application

of Intersectionality Feminist Theory 97 CHAPTER 10 A Holistic Approach to Women’s Employment 111

▸ Introduction

This chapter introduces key concepts that will help you examine healthcare issues related to nerability and vulnerable populations These concepts form a theoretical perspective on caring for the vulnerable that considers not only ethnicity as a cultural factor but also the culture of vulnera-bility The chapter provides nurses with information to provide culturally competent care

Vulnerability incorporates two distinguishable aspects One is the individual focus, in which viduals are viewed within a system context; the second is an aggregate view of “vulnerable popu-lations.” Much of the literature on vulnerability is targeted toward the aggregate view, and nurses certainly need to address groups’ needs But nurses also treat individuals, and need to learn how to care for both individuals and groups It is critical for practitioners to remember that groups are com-posed of individuals We should not stereotype individuals in terms of their group characteristics,

indi-OBJECTIVES

At the end of this chapter, you will be able to:

1 Distinguish between vulnerability and the vulnerable population.

2 Identify at least five populations at risk for health disparities.

3 Discuss how poverty influences vulnerability.

but working with vulnerable populations is cost-effective because we can detect epidemiological patterns in groups and develop some standardized interventions to provide better quality health care to more people.

Vulnerability means “susceptibility” and has a specific connotation in health care that refers to

those at risk for health problems According to Aday (2001), vulnerable populations are those at risk for poor physical, psychological, or social health Any person can be at risk statistically by having the potential for certain illnesses based on a genetic predisposition (Scanlon & Lee, 2007) Anyone can also be vulnerable at any given point in time because of life circumstances or a response to ill-ness or events However, the notion of a vulnerable population is a public health concept that re-fers to vulnerability by virtue of status Some groups are at risk at any given point in time relative

to other individuals or groups

To be a member of a vulnerable population does not necessarily mean a person is vulnerable Many individuals within vulnerable populations would resist the notion that they are vulnerable because they prefer to focus on their strengths rather than their weaknesses These people might

argue that the term vulnerable population is just another label that healthcare professionals use to

promote a system of health care that they, the consumers of care, consider patronizing It is ant to distinguish between a state of vulnerability at any given point in time and a labeling process

import-in which groups of people at risk for certaimport-in health conditions are further margimport-inalized

Some members of society who are not members of the culturally defined vulnerable tions described here might be vulnerable only in certain contexts For example, nurses who work

popula-in emergency rooms are vulnerable to violence Hospital employees and visitors are vulnerable

to infections Preschool teachers and day care providers are vulnerable to a host of able diseases because of their daily contact with young children Individuals who work with heavy machinery are at risk for certain injuries Patients are vulnerable to their nurses, who hold their lives in their hands

communic-Other examples of vulnerable groups might include people who pick up hitchhikers, ers who drink alcohol, people who travel on airplanes during flu season, college students who are cramming for exams, and people who are caught in natural disasters There is an unfortunate ten-dency in our culture to judge some vulnerable people as being at fault for their own vulnerability and to blame those who place others at risk For example, rape victims have been blamed for entic-ing their attackers People who pick up hitchhikers might be viewed as foolish, even though they intended to show kindness and consideration for those stranded by car trouble Airline passengers who continually sneeze might anger their seatmates, who feel at risk for catching a communicable disease While it is logical to argue that we should be more cautious about personal protection in societies in which dangers exist in so many contexts, that concept is quite different from blaming the victim Criminals and predators need to be held accountable for criminal behavior Victims can

driv-be taught self-defense tactics, but they need to driv-be reassured that the crime was not their fault ply because they were in the wrong place at the wrong time

per-Immigrants and the poor (including the working poor) have limited access to health care because

of the way health insurance is obtained in the United States Children, women, and the elderly are vulnerable to a host of healthcare problems—notably violence, but also specific health problems associated with development or aging Developmental examples might include susceptibility to poor influenza outcomes for children and the elderly, psychological issues of puberty and meno-pause, osteoporosis and fractures among older women, and Alzheimer’s disease

Bezruchka (2000, 2001), in his provocative work, addressed the correlation between poverty and illness but also asserted that inequalities in wealth distribution are responsible for the U.S pop-ulation’s state of health Bezruchka argued that a country’s economic structure is the most pow-erful determinant of its people’s health He noted that Japan, with its small gap between rich and poor, has a high percentage of smokers but a low percentage of mortality from smoking Bezruchka advocated redistribution of wealth as a solution to health disparities

The prescription drug benefit for Medicare recipients highlights Bezruchka’s observations about disparities in the United States Senior citizens are among the most vulnerable in any society, includ-ing the United States, where Medicare attempts to address some of their healthcare costs However, while practitioners might value a philosophy of social justice (Larkin, 2004), the implementation

of social justice is usually balanced with cost In the case of the Medicare prescription drug fit, the cost exceeded $700 billion over the period 2006–2015 (Gellad, Huskamp, Phillips, & Haas, 2006) The difficulties created by attempting to balance social justice with cost illustrate how diffi-cult it is to implement Bezruchka’s ideas in the United States

Aday (2001) published a framework for studying vulnerable populations that incorporated the World Health Organization’s (1948) dimensions of health (physical, psychological, and social) into a model of relationships between individual and community on a variety of policy levels

In Aday’s framework, which is still applicable, the variables of access, cost, and quality are critical for understanding the nature of health care for vulnerable populations Access refers to the abil-ity of people to find, obtain, and pay for health care Costs can be either direct or indirect: Direct costs are the dollars spent by healthcare facilities to provide care, whereas indirect costs are losses resulting from decreased patient productivity (e.g., absenteeism from work) Quality refers to the relative inadequacy, adequacy, or superiority of services

Other authors who have addressed the conceptual basis of vulnerable populations include Sebastian (1996; Sebastian et al., 2002), who focused on marginalization as a factor in resource allocation, and Flaskerud and Winslow (1998), who emphasized resource availability in the broad sense of socioeconomic and environmental resources Karpati, Galea, Awerbuch, and Levins (2002) argued for an ecological approach to understanding how social context influences health outcomes Lessick, Woodring, Naber, and Halstead (1992) described the concept of vulnerability in relation-ship to a person within a system context Although their study applied the model to maternal-child nursing, the authors argued that the model is appropriate in any clinical setting

Spiers (2000) argued that epidemiological views of vulnerability are insufficient to explain human experience and offered a new conceptualization based on perceptions that are both etic (externally defined by others) and emic (defined from the person’s point of view) Etic approaches are helpful in understanding the nature of risk in a quantifiable way Emic approaches enable you

to understand the whole human experience and, in so doing, help people capitalize on their acity for action

cap-Concepts and Theories 5

The Healthy People objectives are even more important today than when first envisioned.

When Flaskerud et al (2002) reviewed 79 research reports published in Nursing Research,

they concluded that although researchers have systematically addressed health disparities, they have ignored certain groups (e.g., indigenous peoples) They also inappropriately lump together Hispanic members of disparate groups that have their own cultural identity (e.g., Puerto Ricans, Mexicans, Cubans, Dominicans)

Aday (2001) emphasized certain groups as vulnerable populations, and the 2010 priorities showcased obvious needs within these groups and the needs remain to date:

■ High-risk mothers and infants of concern This population reflects the currently high rates of

teenage pregnancy and poor prenatal care, leading to birth-weight problems and infant mortality Affected groups include very young women, African American women, and poorly educated women, all of whom are less likely than middle-class White women to receive adequate prenatal care because of limited access to health care

■ Chronically ill and disabled persons Individuals in this category not only experience higher

death rates than comparable middle-class White women because of heart disease, cancer, and stroke, but they are also subject to prevalent chronic conditions such as hypertension, arthri-tis, and asthma The debilitating effects of such chronic diseases lead to lost income resulting from limitations in daily living activities African Americans, for example, are more likely to experience ill effects and to die from chronic diseases

■ Persons living with HIV/AIDS In the past decade or so, advances in tracing and treating AIDS

have resulted in declines in deaths and increases in the number of people living with HIV/AIDS This increase is also due, in part, to changes in transmission patterns from largely male homosexual or bisexual contact to transmission through heterosexual contact and sharing needles among intravenous (IV) drug users

■ Mentally ill and disabled persons The population with mental illness is usually defined broadly

to include even those individuals with mild anxiety and depression Prevalence rates are high with age-specific disorders, and severe emotional disorders seriously interfere with activities

of daily living and interpersonal relationships

■ Alcohol and other substance abusers The wide array of substances that individuals in this group

abuse includes drugs, alcohol, cigarettes, and inhalants (such as glue) Intoxication results in chronic disease, accidents, and, in some cases, criminal activity Young male adults in their late teens and early twenties are more likely to smoke, drink, and take drugs

■ Persons exhibiting suicide- or homicide-prone behavior Rates of suicide and homicide differ

by age, sex, and race Elderly White and young Native American men are most likely to kill themselves, and young African American, Native American, and Hispanic men are most likely

to be killed by others

■ Abusive families Children, the elderly, and spouses (overwhelmingly women) are likely targets

of violence within the family Although older children are more likely to be injured, young female children older than 3 years of age are consistently at risk for sexual abuse

■ Homeless persons Because of ongoing problems in identifying this population, the estimated

prevalence rates at any given time are low and vary across the country Generally, more young men are homeless, but all homeless individuals are likely to suffer from chronic diseases and are vulnerable to violence

■ Immigrants/refugees Health care for immigrants, refugees, and temporary residents is

compli-cated by the diversity of languages, health practices, food choices, culturally based definitions

of health, and previous experiences with American bureaucracies

Aday (2001) provided much statistical information for these vulnerable groups, but lence rates for specific conditions change periodically Refer to the website of the National Center for Health Statistics (www.cdc.gov/nchs) for updated information

preva-Trends in families over the last five decades (the lifetime of the baby boomers) show marked changes in the demographics of families, and these changes affect health disparities Currently, more men and women are delaying marriage, with more people choosing to live together first Divorce rates are higher, with a concurrent increase in single-parent families Out-of-wedlock births have increased, partially due to decreases in marital fertility There is a sharp and sustained increase in maternal employment (Hofferth, 2003)

The Healthy People data stress health disparities as a major issue both in individual health and

in the healthcare system in that our structures are not addressing the needs of all citizens While there is an emphasis on culturally competent care for all, our health professions fall far short of the goals we have set for the nation Racial and ethnic disparities still exist and increase the cost

of health care When prevention programs are applied differentially, health status decreases and acuity levels increase with a corresponding cost not only in monetary terms but in human terms.Complicating discussions about health disparities is that the literature often treats race and socioeconomic status (SES) separately Since a disproportional number of minorities are poor, it is hard to tell if race or income is more important Dubay and LeBrun (2012) studied the two together and found that within each racial/ethnic group, a greater proportion of low- versus high-SES indi-viduals were in poor health, a lower proportion had healthy behaviors, and a lower proportion had access to care For both socioeconomic levels, minorities had poorer health outcomes than Whites.The populations discussed in this chapter represent a small proportion of those who are vul-nerable Anyone can be considered vulnerable at a specific point in time, but when we discuss vul-nerable populations we usually think of people who are members of groups at risk for certain health disparities, whether short-term or long-term Efforts have been made in each edition of this text to include authors who have an expertise with a variety of vulnerable populations

The U.S Congress directed the Institute of Medicine (IOM) to study the extent of racial and nic differences in health care and to recommend interventions that eliminate health disparities (Smedley, Stith, & Nelson, 2003) The IOM found consistent evidence of disparities across a wide range of health services and illnesses Although these racial and ethnic disparities may occur within

eth-a wider historiceth-al context, they eth-are uneth-accepteth-able, eth-as the IOM pointed out It urged eth-a genereth-al lic acknowledgment of the problem and advocated specific cross-cultural training for health pro-fessionals Other recommendations included specific legal, regulatory, and policy interventions

pub-Institute of Medicine Study 7

that speak to fairness in access; increases in the number of minority health professionals; and ter enforcement of civil rights laws IOM recommendations with regard to data collection should monitor progress toward the goal of eliminating health disparities based on different treatment for minorities.

bet-Vulnerability to Specific Conditions or Diseases

A large portion of the research on specific conditions and diseases was generated from ogy data and predates much of the medical and nursing literature on disparities Researchers on vulnerability to these specific conditions tend to take an individual approach, in that conditions or diseases are treated from the point of view of how a particular individual responds to life stressors and how that response can cause the condition to develop or continue

psychol-Researchers have focused on conditions too numerous to report here, but a search quickly turned up references to alcohol consumption in women and vulnerability to sexual aggression (Testa, Livingston, & Collins, 2000); rape myths and vulnerability to sexual assault (Bohner, Danner, Siebler, & Stamson, 2002); self-esteem and unplanned pregnancy (Smith, Gerrard, & Gibbons, 1997); lung trans-plantation (Kurz, 2002); coronary angioplasty (Edell-Gustafsson & Hetta, 2001); adjustment to lower limb amputation (Behel, Rybarczyk, Elliott, Nicholas, & Nyenhuis, 2002); reaction to natural disasters (Phifer, 1990); reaction to combat stress (Aldwin, Levensen, & Spiro, 1994; Ruef, Litz, & Schlenger, 2000); homelessness (Morrell-Bellai, Goering, & Boydell, 2000; Shinn, Knickman, & Weitzman, 1991); mental retardation (Nettlebeck, Wison, Potter, & Perry, 2000); anxiety (Calvo & Cano-Vindel, 1997; Strauman, 1992); and suicide (Schotte, Cools, & Payvar, 1990)

Depression

Many authors have focused on cognitive variables to explain vulnerability to depression (Alloy & Clements, 1992; Alloy, Whitehouse, & Abramson, 2000; Hayes, Castonguay, & Goldfried, 1996; Ingram & Ritter, 2000) Others have explored gender differences (Bromberger & Mathews, 1996; Soares & Zitek, 2008; Whiffen, 1988) In a major analysis of the existing literature on depression, Hankin and Abramson (2001) explored the development of gender differences in depression They noted that although both male and female rates of depression rise during middle adoles-cence, incidence in girls rises more sharply after age 13 or puberty This model of general depres-sion might account for gender differences based on developmentally specific stressors and implies possible treatment options

Variables related to attitudes present a third area of focus in the literature (Brown, Hammen, Craske, & Wickens, 1995; Joiner, 1995; Zuroff, Blatt, Bondi, & Pilkonis, 1999) In a study of 75 college students, researchers found that a high level of “perfectionistic achievement attitudes,”

as indicated on the Dysfunctional Attitude Scale, correlated with a specific stressor (e.g., poorer than expected performance on a college exam) to predict an increase in symptoms of depression (Brown et al., 1995)

Situational factors also produce vulnerability to depression For example, the stress of ing care to patients with Alzheimer’s disease can produce or exacerbate symptoms of depression

provid-In a study of Alzheimer’s patients’ family caregivers, Neundorfer and colleagues (2006) found that caregivers with prior depressive symptoms were not necessarily more prone to depression than others, but rather that all subjects were more likely to experience depression when the patient’s dependency was high

Despite the current trend to regulate depression via chemical means, promising evidence suggests that emotion regulation instruction can modify a vulnerability to depression Ehring and colleagues (Ehring, Tuschen-Caffier, Schulke, Fischer, & Gross, 2010) conducted an experiment in which they showed short films with sad content to people with depression as well as a control group According to the researchers, if subjects were vulnerable to depression, they would spontaneously use dysfunctional emotional regulation strategies, but they were able to use more functional tech-niques if instructed to do so.

Schizophrenia

Smoking is a problem in individuals with schizophrenia, and there is some evidence that smokers have a more serious course of mental illness than nonsmokers The theory proposed to explain this relationship is that schizophrenic patients smoke as a way to self-medicate (Lohr & Flynn, 1992)

In a twin study investigating lifetime prevalence of smoking and nicotine withdrawal, Lyons et al (2002) found that the association between smoking and schizophrenia may be related to familial vulnerability to schizophrenia

Other authors have examined the relationship between schizophrenia and personality This relationship remains largely unexplored, but it might provide a new direction in which to search for knowledge about the vulnerability to schizophrenia In their meta-analysis, Berenbaum and Fujita (1994) found a significant relationship between introversion and schizophrenia; they sug-gested that studies on this link might provide new knowledge about the covariation of schizophre-nia with mood disorders, particularly depression In an analysis of the literature on the family’s role

in schizophrenia, Wuerker (2000) presented evidence for the biological view, concluding that there

is a unique vulnerability to stress in schizophrenic patients and that communication difficulties within families with schizophrenic members may be due to a shared genetic heritage

Eating Disorders

Acknowledgment of food as a common focus for anxiety has become a way of life Canadian

searchers use the term food insecurity to describe the phenomenon of nutritional vulnerability

re-sulting from food scarcity and insufficient access to food by welfare recipients and low-income people who do not qualify for welfare (McIntyre et al., 2003; Tarasuk, 2003) In the United States, eating disorders are often a result of body-image problems, which are particularly prevalent in gay men and heterosexual women (Siever, 1994) In a prospective study of gender and behavioral vul-nerabilities related to eating disorders, Leon, Fulkerson, Perry, and Early-Zaid (1995) found signif-icant differences among girls in the variables of weight loss, dieting patterns, vomiting, and use of diet pills They reported a method for predicting the occurrence of eating disorders based on per-formance scores on risk- factor status tests in early childhood

HIV/AIDS

In a meta-analysis of 32 HIV/AIDS studies involving 15,440 participants, Gerrard, Gibbons, and Bushman (1996) found empirical evidence to support the commonly known motivational hypothesis This hypothesis is derived from the Health Belief Model (Becker & Rosenstock, 1987) The authors found that perceived vulnerability was the major force behind prevention behavior

in high-risk populations but cautioned that studies were not available for low-risk populations

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They also discovered that risk behavior shapes perceptions of vulnerability—people who engage

in high-risk behavior tend to see themselves as more likely to contract HIV than those who gage in low-risk behavior

en-Evidence that high-risk men tend to relapse into unsafe sex behaviors is provided in a tudinal study of results of an intervention in which researchers were able to successfully predict relapse behavior (Kelly, St Lawrence, & Brasfield, 1991) In a gender study on emotional distress predictors, Van Servellen, Aguirre, Sarna, and Brecht (2002) found that although all subjects had scores indicating clinical anxiety levels, HIV-infected women had more symptoms and poorer func-tioning than HIV-infected men

longi-In a study that used a vulnerable populations framework, Flaskerud and Lee (2001) ered the role that resource availability plays in the health status of informal female caregivers of

consid-people with HIV/AIDS (n = 36) and age-related dementias (n = 40) The caregivers experienced

high levels of both physical and mental health problems However, the use of the vulnerable ulations framework explained the finding that the resource variables of income and minority eth-nicity made the greatest contribution to understanding health status In terms of the risk variables, anger was more common in caregivers for HIV-infected patients and was significantly related to depressive mood, which was also common among these caregivers

pop-Gender differences among HIV-infected people can exacerbate their response to the disease Murray et al (2009) interviewed Zambian women infected with HIV about their reasons for tak-ing or not taking antiretroviral drugs The key informants revealed fears of abandonment by their husbands, a decision to stop the medications when they felt better, choosing instead to die, and fear of having to take medications for the rest of their lives These women are vulnerable not only

to the disease but also to their family’s reaction The barriers to taking medication that could save their lives may be overshadowed by these risks, making them even more vulnerable

Substance Abuse

In a study of 288 undergraduates, Wild, Hinson, Cunningham, and Bacchiochi (2001) examined the inconsistencies between a person’s perceived risk of alcohol-related harm and motivation to reduce that risk These researchers found a general tendency for people to view themselves as less vulnerable than their peers regardless of their risk status Notably, however, the at-risk group rated themselves more likely to experience harm than the not-at-risk group The authors con-cluded that motivational approaches to reducing risk should emphasize not only why people drink but also why they should reduce alcohol consumption Additional support for the motivational hypothesis—that perceived vulnerability influences prevention behavior—extends to marijuana use (Simons & Carey, 2002) and to early onset of substance abuse among African American children (Wills, Gibbons, Gerrard, & Brody, 2000)

In a study of family history of psychopathology in families of the offspring of alcoholics, searchers demonstrated that male college student offspring of these families are a heterogeneous group and that the patterns of heterogeneity are related to familial types in relation to vulnerabil-ity to alcoholism Three different family types were identified:

re-■ Low levels of family pathology with moderate levels of alcoholism

■ High levels of family antisocial personality and violence with moderate levels of family drug abuse and depression

■ High levels of familial depression, mania, anxiety disorder, and alcoholism with moderate levels

of familial drug abuse (Finn et al., 1997)

Students and Faculty as Vulnerable Populations

The April 2007 shootings at Virginia Tech highlighted that college students in the United States face a relatively different kind of threat, much as the Columbine tragedy did for high school stu-dents Alienated young people who stalk and kill their classmates, for whatever reasons seem log-ical to them, represent a new type of terrorist Yet, the literature has not documented either the experience of these alienated students, nor have we found effective ways of treating and prevent-ing violent behavior among them

Some attempts have been made to document types of violence toward students The American College Health Association (ACHA) published a white paper on the topic (Carr, 2007) that largely focuses on the most frequent types of student-directed violence, such as sexual assault, hazing, sui-cide, celebratory violence, and racial/gender/sexual orientation–based violence Although spree killings are mentioned, not much attention can be given until more is known about these killers.Some attention has been given to the relationship between alcohol use and violence Marcus and Swett (2003) studied precursors to violence among 451 college students at two sites and used the Violence Risk Assessment tool to establish the relationship of patterns related to gender, peer pressure, and alcohol use Nicholson and colleagues (1998) examined the influence of alcohol use

in both sexual and nonsexual violence

A British study on responding to students’ mental health needs illustrates how the previously discussed categories of mental illnesses can be exacerbated in the vulnerable population of college students with mental illnesses Using surveys and focus groups, Stanley and Manthorpe (2001) as-sessed college students with mental illnesses and identified many issues related to the problems of providing care to students The authors noted that high rates of suicide and need for antidepres-sant medication strained the National Health Service’s resources, and that colleges varied widely

in their ability to provide effective interventions

In an Australian study, researchers found a significantly high level of food insecurity among college students Food insecurity was measured by a yes response to a survey question about run-ning out of food and not being able to buy more (Hughes, Serebryanikova, Donaldson, & Leveritt, 2011) Implications are not only related to student retention, progression, and success but also to long-term health effects

DalPezzo and Jett (2010) identified nursing faculty as a vulnerable population They noted dent incivility, horizontal violence, and abuse of power by administrators as examples of the pres-sures faculty face

stu-While these studies document some issues related to campus violence, they do not go far enough

to explain and prevent the types of spree killings students have experienced in the last decade The threat of copycat attacks has engendered continuing fears among students, parents, and teachers More research is needed on personal characteristics of these young killers, potential interventions, and prevention strategies

Other Vulnerable Populations

Combat Veterans

The increasing warfare around the world produces a population of ex-soldiers experiencing not only the physical trauma of combat but also psychological trauma, resulting in long-term disorders such as post-traumatic stress disorder (PTSD) Revised guidelines for treatment indicate that, in most cases, the best recommendation for treatment is trauma-focused cognitive behavioral ther-apy (Hamblen, 2017)

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Transgender Persons

These individuals are at higher risk for sex trafficking and street violence due to their status A study by Dinno (2017) noted that homicide rates for young Black and Latina transgender adults was higher than in the comparison group Dinno emphasized that these young people should be con-sidered a vulnerable population Another risk factor for transgendered women who take hormone therapy is increased thromboembolic risk, and lower doses are recommended (Streed et al., 2017)

Priorities for Research on Vulnerable Populations

Healthcare providers and researchers tend to develop their own priorities for research and then rive clinical treatments from them, which is one of the current views on evidence-based research However, when providers do not consider emic data, they can miss the mark by developing strat-egies that patients do not see as their priority and, therefore, do not follow In a study designed to elicit what priorities patients would set, a team of multidisciplinary researchers from the Midwest asked people to share their priorities The researchers concluded that members of these vulnerable populations (in underserved communities) prioritized research on quality of life, patient-doctor relationship, special needs, access, and comparing approaches (Goold et al., 2017.)

A growing body of literature has focused on the concept of vulnerability as a key factor of concern for practitioners who work with clients that have many kinds of presenting problems Vulnerabil-ity has two aspects—the individual and the group For the individual, practitioners and research-ers focus on the patient’s vulnerabilities to specific conditions or diseases, but in public health, the group concept is dominant, and intervention is directed toward aggregates When working with clients from vulnerable populations, it is critical to understand that they might not view themselves

as vulnerable and may actually resent labels that imply they are not autonomous

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15

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This chapter describes advocacy as a team effort and demonstrates through case studies how you can function as an advocate and how a team of healthcare professionals can work together for the good of their clients We review the nursing literature separate from the social work literature because the roles of each professional are distinct The case studies bring the two disciplines together

to show how the roles can complement each other We hope that readers will be inspired to look for ways in which to collaborate—to bring the skills and talents of many disciplines together for the sake of the patients, all of whom are vulnerable when they need our services

OBJECTIVES

At the end of this chapter, you will be able to:

1 Compare and contrast the concept of advocacy from the viewpoints of nursing and social work.

2 Identify key features of the patient advocate’s role.

3 Provide an analysis of your patient cases from the viewpoint of the social worker or nurse.

Advocacy Role of Providers

Mary de Chesnay and Vanessa Robinson-Dooley

Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images

17

CHAPTER 2

▸ Review of the Nursing Literature

The Patient Advocacy Concept

The nursing literature on patient advocacy seems to be divided into the conceptualization of advocacy (Hyland, 2002) and the role functions of an advocate Bu and Jewesky (2006) conducted a concept analysis of patient advocacy by using Walker and Avant’s (1995) procedure The concept analysis generated a mid-range theory with three attributes of patient advocacy: safeguarding autonomy, acting on the patient’s behalf, and championing social justice These attributes recognize the vul-nerability of patients, the need for some protection within the healthcare system while respecting autonomy, and the international recognition of the patient advocate’s role

The attributes described here are consistent with the role of advocate that institutional review boards (IRBs) play in research involving human and animal subjects The federal regulations for composition of IRBs mandate inclusion of lay members specifically for keeping researchers honest

by ensuring that investigators consider the study population’s needs and the study’s effects on the people who participate Mmatli (2009) goes even further in his paper on including people with dis-abilities in evidence-based research by arguing that such individuals need to be involved not only

in designing studies but also in making decisions about the research’s application

In a critical review of the nursing literature on advocacy, Mallik (1997) argued that the ture lacks clarity in the operationalization of the advocacy concept, suggesting that authors tend to focus more on defending the advocate’s role than on explaining it Historical reasons for justifying the need for the role are explained by cultural shifts in the roles of physicians and patients’ rights Over time, distrust of experts and technology created a climate of fear, resulting in a higher level of participation by patients in decision making about their own care The result was the creation of a patient’s bill of rights and the role of the patient advocate (Annas, 1988)

litera-Annas also believed that the nurse is in an ideal position to serve as an advocate (litera-Annas & Healey, 1974) Nurses have certainly filled this role quite ably, and there are many examples of nurses taking on healthcare organizations as whistle-blowers Nevertheless, members of other disciplines may also serve as effective advocates For example, social workers might be even more effective than nurses in this role because they do not act directly with the medical care of patients and do not participate in historical doctor-nurse games Even so, to claim the role for any one discipline

is not only disrespectful to our colleagues in health care but self-serving and inconsistent with the spirit of advocacy What seems clear is the need to understand the context of the advocacy role both for the profession, mindful of the rules and regulations, and for the professional and practice setting (Jugessur & Iles, 2009)

In a provocative paper discussing advocacy, Zomorodi and Foley (2009) clarified the thin line between advocacy and paternalism As healthcare providers who are experts in the treatment of disease, we can easily cross the line between speaking for a patient’s right to self-determination and deciding we know what is best for the patient This thinking is an occupational hazard for nurses and physicians Consider the case of a 45-year-old small business owner hospitalized for myocar-dial infarction His heart attack comes the day his most trusted employee resigns and the night be-fore a major sales presentation If he does not get the contract, his business could fail Because he is the breadwinner, his wife and five children are also at risk if he cannot work The patient recovers nicely from the acute episode and is in the ICU asking for a phone to make some calls to explain his absence at the meeting The staff knows that rest and medications are the best treatment and that he should not be upset by anything They assume that allowing him to talk about business would place him at risk for another heart attack Unfortunately, denying him the use of the phone

causes his anxiety to escalate, which creates a paradoxical effect: His heart rate increases and his blood pressure skyrockets as he sees his life’s work destroyed because he couldn’t have access to a phone for 10 minutes.

The paternalistic approach is particularly prevalent in settings in which multidisciplinary teams are used to deliver patient care While nurses tend to use the language of advocacy, physicians often use the language of medical decision making (McGrath, Holewa, & McGrath, 2006) As one phy-sician put it, “Of course, we are a team and I am the captain.” Fortunately, the nursing profession has evolved from an individual perspective to a systemic perspective in which nurses collectively act to change institutional culture (Mahlin, 2010)

The Patient Advocate’s Role

Pullen (1995) argues that the nurse’s role as advocate is essential to modern health care cause of paternalism in health care Paternalism reduces the patient to a passive recipient of care and forces the patient to depend on the integrity and self-regulation of the providers Yet, patients are often unable to make decisions for themselves without help, either owing

be-to ignorance of their own complex health issues or because of temporary incapacitation The nurse as advocate can play a major role in helping patients regain autonomy In the example described earlier, the nurse as advocate might have offered to stay near the monitoring equipment

in the nurses’ station while the patient made the call to make sure he would be safe However, there are cultural factors that can interfere with the professional’s view of treatment An example that

is emerging as immigration increases from developing countries is the practice of female genital cutting (McCrae & Mayer, 2014) How do nurses balance respect for cultural tradition with ideas about sanitation, rights of female children, and acculturation to a society that does not approve of female genital cutting?

Community-based participatory action research enables communities to generate relevant knowledge to benefit their own people Similarly, patient advocacy groups can benefit healthcare consumers Lara and Salberg (2009) describe how advocacy groups may play a role in health pol-icy by linking patients and consumers of healthcare services with policy makers Patients, for their part, have realized that they can serve as their own advocates Consequently, they are increasingly educating themselves by searching the Internet for information on their diseases or symptoms and coming to appointments armed with more sophisticated questions for which they demand answers.Further support for the value of partnerships between patients or consumers and provid-ers comes from a study of 405 patients and 118 nurses in 12 hospital units in Finland Vaartio, Leino-Kilpi, Suominen, and Puukka (2009) found that patients varied in their acts of advocacy, and nurses applied principles of advocacy in a haphazard way when caring for patients with post-surgical pain They concluded that patients perceived care as being good most of the time but not all the time, while nurses were quite content with their level of advocacy The explanation for the patients’ perception was that either they were not asked about their preferences or they did not know to ask At any rate, this lack of participation can be construed as a failure of nurses to pro-vide sufficient information about options for patients and to invite patients to participate more fully in decision making

In a survey of 5,000 medical-surgical nurses registered in Texas, Hanks (2010) found that nurses often cited certain role behaviors when describing their role as advocates Education of patients and families emerged as the key response, closely followed by communicating with others on the team and ensuring adequate care Issues of safety and ensuring that patients’ rights were protected were also considered important responsibilities for advocates

Review of the Nursing Literature 19

While communicating effectively is a key component of effective patient advocacy, little has been done to determine what effective communication in advocacy looks like In a grounded the-ory study of 12 nurses at eight Midwestern hospitals, Martin and Tipton (2007) used the constant comparative method to develop a typology of communication roles that included liaison, feed-back remediation, counseling and support, system monitor, troubleshooter, investigator, and group facilitator An example of the liaison role is communicating with the physician on behalf of the patient and family Feedback remediation includes informing nurses when their behavior toward a patient indicates a less than therapeutic approach Counseling and support include behaviors such

as providing refreshments as well as the traditional counseling activities of listening and problem solving System monitoring is an important action in terms of environmental issues such as poor room temperature The troubleshooter makes sure that problems are resolved immediately, some-times through informal connections such as calling the pharmacy to hurry a prescription When serious problems occur, the investigator takes action to discover the causes and fix them Finally, the group facilitator holds meetings with family members, staff, and physicians to make difficult decisions such as those involving end-of-life care

The literature seems clear about role functions and behaviors of nurses who are ful advocates, but how did they become so effective? Advocacy is learned behavior, implying the importance of teaching role behaviors to students In a synthesis of qualitative studies from 1993–2005, MacDonald (2006) found that while advocacy is a complex concept, it can be studied within the context of relational ethics and, therefore, can be learned The starting place is recog-nizing patients’ and clients’ vulnerability, and not just those who are developmentally disabled (Jenkins, 2012) but anyone who is temporarily unable to advocate for themselves Case studies can help students identify the patient’s “authentic” wishes by helping students to clarify their own values as they learn to help patients clarify theirs

Definitions

Advocacy has been defined in numerous ways within the social work literature It has been called one of the profession’s “cornerstone” activities (Clark, 2007, p 3) Even though advocacy is often viewed as one of the major roles for the generalist social worker, Dorfman (1996) states that

advocacy is also the clinical social worker’s role The Encyclopedia of Social Work defines

advo-cacy as the “act of directly representing, defending, intervening, supporting or recommending a

course of action on behalf of one or more individuals, groups, or communities, with the goal of

securing or retaining social justice” (Hoefer, 2006, p 8; Mickelson, 1995, p 95) The Social Work

Dictionary defines advocacy as the “act of directly representing or defending others” (Barker, 1995,

p 11; Hoefer, 2006, p 8) Both definitions speak to what social workers do in their roles as advocates.Lens (2004) noted that advocacy could be viewed from the perspective of the activity that the individual is performing Activities such as brokering, case advocacy, and cause advocacy are all

part of social work practice (Lens, 2004) Pierce (1984) defined class advocacy as a form of

advo-cacy in which social workers use their training and skills to influence social policies and programs that are created to assist a particular group or potential client Class advocacy is an activity that is addressed in social workers’ professional code of ethics (Brawley, 1997) This form of advocacy focuses on ensuring that clients receive services they are entitled to in the human service arena (Sheafor

& Horejsi, 2003) Sosin and Caulum (1983) defined advocacy through “activities” when they sought

to conceptualize advocacy by involving the actions of three social actors: the advocate, the client, and the decision maker This conceptualization resulted in advocacy being defined as the following:

An attempt, having as greater than zero probability of success, by an individual or group to influence another individual or group to make a decision that would not have been made otherwise and that concerns the welfare or interests of a third party who is in a less powerful status than the decision maker

(Sosin & Caulum, p 13)

Advocacy has also been defined in the literature as an action that is defined by the setting in which it is performed Schneider and Lester (2000) note that advocacy involves the relationship among the client and a particular system and the social worker working to influence the decision-making process on behalf of the client Hospitals are a familiar setting for social workers and their advo-cacy efforts Advocacy in this setting involves the social worker intervening on behalf of the patient

to access needed resources when the organization is not meeting his or her needs (Faust, 2008).Despite the varying definitions of advocacy found in the literature, it is clear that the meanings are similar, and that advocacy is an important role for the social worker (Gilbert & Specht, 1976; Lynch & Mitchell, 1995; Sosin & Caulum, 1983) both today and historically

A Brief History of Advocacy and Social Work

Advocacy has been an integral part of the social work profession since its inception Such advocacy efforts have usually occurred in response to the social needs of the time

During the Civil War and World War I, for example, social work focused on responding to the major industrialization changes of this time period Issues such as working hours, work condi-tions, and safety became the focus of the social workers’ advocacy efforts (Kirst-Ashman & Hull, 2009) The increased migration from rural areas all over the United States to larger cities was fu-eled by the hopes of prosperity through employment Individuals came from these rural areas with dreams of finding work in cities, but instead were often met with overcrowded neighborhoods and living conditions that promoted health concerns for many (Kirst-Ashman & Hull, 2009) The set-tlement house movement of the 1880s represented a response to these poor inner-city living condi-tions Settlement houses were places where religious leaders and others moved into neighborhoods

to interact with the poor and “advocate for child labor laws, women’s suffrage, public housing, and public health” (Smith, 1995, p 2130)

In contrast to the settlement movement, the Charity Organization Societies (COS) of the early 1900s focused on “curing individuals rather than on empowering communities” (Kirst-Ashman & Hull,

2009, p 35) Faust (2008) observed that during the early period of the COS, at the turn of the 20th century, these “friendly visitors” were concerned with the current social conditions Although their work sought to address what were perceived as “moral deficiencies” at that time, the ensuing activi-ties, discussions, and work focused on eradicating the wretched conditions that plagued urban cities (Faust, 2008; Miley, O’Melia, & DuBois, 2009) As Gilbert and Specht (1976) point out, this attention to therapeutic and clinical interventions prevailed as the major theme of social work from 1935 to 1960.Although advocacy was a part of the profession long before this time, it became an especially prominent activity for social workers in the 1960s (Gilbert & Specht, 1976) The turbulent 1960s were the period of the civil rights movement, and the pressures for social justice exerted as part

of that movement reaffirmed social workers’ need to focus on advocacy as a profession (Gilbert &

Review of the Social Work Literature 21

Specht, 1976) “The 1960s produced a new focus on social change versus individual pathology” (Kirst-Ashman & Hull, 2009, p 36), which required the social work profession to revisit its earlier days of working to empower clients and move beyond therapeutic interventions In 1969, an Ad Hoc Committee on Advocacy publication included four major papers addressing the need for advocacy-related work in social work (Gilbert & Specht, 1976) The significance of this committee was that it was established by the national organization for the social work profession, the National Association of Social Workers (NASW) Task Force on the Urban Crisis and Public Welfare Prob-lems “The Ad Hoc Committee of NASW reminded social workers of their social obligation [to advocacy]” (Faust, 2008, p 293) The NASW has, throughout the years, continued to affirm the importance of advocacy for the social work profession The NASW Code of Ethics (NASW, 1994) details the responsibilities of social workers, including the responsibility to work to “promote general welfare and social justice” (Lynch & Mitchell, 1995, p 9).

Advocacy on behalf of clients has been an important role of social workers for more than

130 years Advocating on behalf of clients has historically been the responsibility of social ers whether they are working as case workers, general practitioners, researchers, or clinical social workers Advocacy has become something that all social workers are expected to incorporate into their professional role and identity (Gilbert & Specht, 1976, p 288)

There comes a time in everyone’s life when it feels like people are just not listening From trying

to get through to a parent to wanting to scream at political officials, everyone has experienced the frustration of being ignored Mental health patients suffer this kind of dissatisfaction every day, and

it is for this reason that mental health advocates have become vital to their well-being Advocacy through legal, peer, and medical support is beneficial and necessary to the effective treatment and recovery of mental health patients by providing a voice for those who would otherwise be silenced, but it can also be counterproductive if not handled correctly

Being an advocate has many different meanings, but the primary role of a person who holds this responsibility is to defend and support the decisions made by and the legal rights of the person they represent It is easy to tread on the rights of individuals with mental illness because they may not feel capable of expressing their rights to certain people or they may not even be aware that they have rights

at all While it should be obvious that social workers, nurses, and other healthcare professionals should respect the rights of their patients, that is unfortunately not the case In many instances, a lack of un-derstanding has proven to be detrimental to recovery for an individual with mental illness, while hav-ing empathy and consideration contributes greatly to a positive result (Stylianos & Kehyayan, 2012).Because of this lack of understanding, maintaining the rights for those with disabilities is be-coming a pertinent issue The Convention of the Rights of Persons with Disabilities began circulat-ing, and by 2010 had 146 signatories and 90 ratifiers The basis of the Convention was to underscore self-determination, merit, and confidence for those with disabilities to make their own choices It served as a form of advocacy for those with mental health issues by declaring that they deserve the same respect and the same rights as everyone else Having a mental illness does not make a person incapable of functioning in society, and he or she should not be treated as such In 1999, the U.S Supreme Court even determined that institutionalizing people with mental illness if they can be treated as a member of the community was a form of discrimination according to the Americans with Disabilities Act, and if possible, people should be placed back into society This kind of legal advocacy, though effective, can easily become complex (Stylianos & Kehyayan, 2012)

A less complex form of advocacy comes from those closest to the individual Peers and tal health practitioners are always involved with people who have mental illnesses and can easily become a source of support Having support from friends whether a person is mentally ill or not

men-is always a source of comfort, which helps the individual to feel confident and empowered Mental health practitioners can be a source of comfort as well, as their main interest involves seeing prog-ress in the individual, and they will help them reach that goal in the best ways possible (Stylianos

& Kehyayan, 2012)

Creating a world that advocates for all its people can be difficult when there are conflicts of interest involved However, the World Health Organization (WHO) has been paving the road to a more equal society for a while WHO’s purpose is to help advance world health, and it recognizes that people with mental disorders have become stigmatized and are viewed as inept at making deci-sions They are vulnerable to abuse and mistreatment by people who should care about their safety The organization also recognizes barriers these individuals face daily, such as the inability to receive proper mental health services and information about these services, as well as poor treatment for those who do receive help, and WHO seeks to actively work to break down these walls between men-tal health patients and the rest of society Because of these reasons, WHO promotes mental health advocacy to enact policies that protect the mentally disabled from harm and promote equality in a way that other organizations or individuals cannot (Funk, Minoletti, Drew, Taylor, & Saraceno, 2006)

By using government support, even though a variety of factors can influence governments, great strides can be made in mental health advocacy Governments have access to resources that can open communication channels between advocacy groups and mental health providers, which will allow for greater cooperation between the two for better treatment of the mentally ill Further, mental health advocacy groups can work with governments to improve existing legislation and enact new laws that will be beneficial to both the mental health patients and those who treat them Government agencies also can communicate with the public Educating the people becomes a catalyst for positive change even in small ways such as reducing the stigma of mental illness Governments and advocacy groups such as WHO together are strong influencers of mental health advocacy movements, and with any hope will improve social attitudes toward people seeking mental health treatment (Funk et al., 2006).Advocacy, although it sounds as straightforward as standing up for a person’s rights and passing laws, is not that simple Mental health advocates are often the only professionals who are working

to help the patients, which can lead to conflicts of interest if the patient has wants that conflict with the professional’s opinion In addition, advocates may easily become caught up in the issues they are currently facing and forget to focus on long-term advocacy, such as policy reform, for future patients Together, these issues lead to advocates’ failure to provide for patients to the fullest extent

of their abilities Placing policy change in a low priority position dwindles the availability of ment for mental health patients, which is the exact opposite of the role advocates are meant to play Some characteristics of advocacy that should be present in all advocates are absent, which is also nonproductive These characteristics include thinking of families as assets instead of hindrances, considering at-home treatment to be inadequate, and working jointly with the many people who have vested interests in the patient’s well-being Advocacy, while it is undoubtedly a positive influ-ence for a patient, does not come unchallenged, and there is always work to be done (Knitzer, 2005)

treat-Be it an individual, group, or government, mental health advocates have a difficult but cial role to play in the lives of mental health patients From acts as small as offering a source of emotional support to as big as working with leaders to pass legislation, advocates work tirelessly to improve the lives of those who need help most desperately They have proven to be extremely ben-eficial to the health and recovery of their patients in the short term, while in the long term leading the way for a better future for patients to come

cru-Mental Health Advocacy: Successes and Shortcomings 23

▸ Interdisciplinary Benefits and Approach

In a world where social service organizations have seen their budgets shrink, staff diminished, and the ability to provide services cut due to difficult economic times, the interdisciplinary approach

to providing services has become even more essential Working to provide services in an era acterized by limited resources has resulted in clients working with multiple agencies and multiple professions In this challenging environment, an interdisciplinary team approach to service provi-sion is the best approach

char-Social work and the nursing profession are well suited to be in the forefront of the plinary service provision movement Clients’ compartmentalized problem focus is often a result of having to seek services from multiple organizations The interdisciplinary team approach to ser-vice lessens compartmentalization of problems by clients and can be found in many mental health and medical settings (Johnson, 1995) “Medical settings also make use of the interdisciplinary team approach in providing for both the psychosocial and the physical needs of the patients; diagnostic centers also make considerable use of this type of team approach” (p 119) When agencies work together and take an interdisciplinary team approach to helping, the client recognizes, respects, and benefits from this approach Most importantly, the professions and social service community ensure the most effective and efficient use of public resources

CASE STUDY 2-1: KAYLA

Kayla is a 16-year-old girl from a public high school She is a straight-A student, a member of multiple clubs, and captain of the gymnastics team Her boyfriend, Chris, is also a model student and supports her in every way Lately, the pressures of keeping up with school work, extracurricular activities, sports, and her relationship have been weighing heavily on her Adding to the stress, rumors have started to circulate around school that Kayla’s parents, who are active in her education and attend all her gym meets, are getting a divorce Teachers have noticed she has begun to withdraw from social activities, preferring to keep to herself as she puts the finishing touches on her assignments As Kayla is eating lunch in the library one afternoon to escape the chaos of the cafeteria, her political science teacher,

Mr Turner, sits down across from her Mr Turner talks to her about the football team and whether

they each think the team will win or lose the homecoming game next Friday Each following day, Mr Turner returns to the library at lunchtime Kayla tells Mr Turner about her plans for the future, where she is going to college, her last date with Chris, and other small updates on her life Soon, Kayla begins asking Chris to eat lunch with her and Mr Turner Chris invites his friends to lunch in the library shortly thereafter, and what began as just Kayla and Mr Turner quickly becomes a small lunchtime gathering Kayla now spends less time at lunch worrying about her grades and other trivial matters, and more time enjoying her friends’ company By spending time with Kayla when she was determined to isolate herself, Mr Turner became an advocate for Kayla’s mental health.

CASE STUDY 2-2: MRS SMITH

Laura Smith is a 24-year-old mother of three who lives in a one-room motel unit and works at a

low-paying waitress job at a local café Although the restaurant chain where she works offers health insurance, she cannot qualify because she is scheduled to work 29 hours per week.

Recently, one of Laura’s children developed a cough and fever Laura was able to have her child seen at the local emergency room, but the treatment was limited such that it covered only enough medication for 3 days of treatment Laura was told she should follow up with the child’s primary care physician and have some testing done to confirm that the cough was not something more serious The emergency room doctor also recommended that her child receive a vaccine that might prevent future problems Laura explained to the doctor that she did not have a regular physician or insurance, and she could not afford to pay for a vaccine or any future doctor visits The emergency room doctor made a referral to the social work department in the hospital and asked if someone could assist Laura with accessing resources to get her medical needs met The emergency room nurse, who had been working with Laura and her son, completed the referral to the social work department and asked the social worker to come and meet with Laura as soon as possible given Laura’s limited flexibility with her employer.

The social worker came to the emergency room and met with Laura and her child The

emergency room nurse remained in the room because Laura was becoming agitated and nervous about the numerous individuals asking her for personal and medical information during this hospital visit The nurse thought her presence might provide Laura with a sense of consistency and assist with calming her fears about the presence of the social worker.

The social worker met with Laura and collected background information about her current home environment, employment, and potential social support network After determining that Laura would need some community resources beyond what the hospital could provide, the social worker and the nurse met to discuss community agencies that might be able to assist Laura and her family The nurse recalled the opening of a community health clinic about 1 mile from the motel where Laura resided Given the proximity to Laura’s current home, this was an ideal option for her child’s follow-up appointment The social worker agreed to make a call to the clinic to determine if Laura might qualify for services.

The social worker was told by the clinic staff that the clinic provided services to families

underinsured or uninsured The clinic also had a sliding-scale policy that it used if families could afford

to pay only a small amount Laura was referred to the clinic and received the following services:

1 Laura was scheduled to come to the clinic and complete her intake and income assessment paperwork A social work intern student was assigned to assist her with completing her

paperwork.

2 Laura’s son was seen by the nurse practitioner to evaluate his cough and other symptoms.

3 It was recommended to Laura that she should have a brief physical examination because she had not seen a doctor for several years Her primary focus had been work and her children, and

it was suggested that a physical might provide Laura with some knowledge about her own health status A nurse practitioner completed her physical examination.

4 The social worker at the clinic asked Laura if there were any other areas in which she might need assistance Laura stated that she could use some assistance with housing, employment, and food The social worker and the social work intern provided Laura with a contact name and direct number for the local housing authority to determine if she would qualify for assistance with Section 8 housing (housing assistance provided to families meeting federal guidelines)

(continues) Case Studies 25