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Black Women's Health: Challenges and Opportunities : Challenges and Opportunities [1 ed.]
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Copyright © 2009. Nova Science Publishers, Incorporated. All rights reserved. Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

Copyright © 2009. Nova Science Publishers, Incorporated. All rights reserved. Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

BLACK WOMEN’S HEALTH: CHALLENGES AND OPPORTUNITIES

Copyright © 2009. Nova Science Publishers, Incorporated. All rights reserved.

No part of this digital document may be reproduced, stored in a retrieval system or transmitted in any form or by any means. The publisher has taken reasonable care in the preparation of this digital document, but makes no expressed or implied warranty of any kind and assumes no responsibility for any errors or omissions. No liability is assumed for incidental or consequential damages in connection with or arising out of information contained herein. This digital document is sold with the clear understanding that the publisher is not engaged in rendering legal, medical or any other professional services.

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

Copyright © 2009. Nova Science Publishers, Incorporated. All rights reserved. Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

BLACK WOMEN’S HEALTH: CHALLENGES AND OPPORTUNITIES

YVONNE WESLEY

Copyright © 2009. Nova Science Publishers, Incorporated. All rights reserved.

EDITOR

Nova Science Publishers, Inc. New York

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

Copyright © 2009 by Nova Science Publishers, Inc.

All rights reserved. No part of this book may be reproduced, stored in a retrieval system or transmitted in any form or by any means: electronic, electrostatic, magnetic, tape, mechanical photocopying, recording or otherwise without the written permission of the Publisher. For permission to use material from this book please contact us: Telephone 631-231-7269; Fax 631-231-8175 Web Site: http://www.novapublishers.com NOTICE TO THE READER The Publisher has taken reasonable care in the preparation of this book, but makes no expressed or implied warranty of any kind and assumes no responsibility for any errors or omissions. No liability is assumed for incidental or consequential damages in connection with or arising out of information contained in this book. The Publisher shall not be liable for any special, consequential, or exemplary damages resulting, in whole or in part, from the readers’ use of, or reliance upon, this material. Any parts of this book based on government reports are so indicated and copyright is claimed for those parts to the extent applicable to compilations of such works. Independent verification should be sought for any data, advice or recommendations contained in this book. In addition, no responsibility is assumed by the publisher for any injury and/or damage to persons or property arising from any methods, products, instructions, ideas or otherwise contained in this publication. This publication is designed to provide accurate and authoritative information with regard to the subject matter covered herein. It is sold with the clear understanding that the Publisher is not engaged in rendering legal or any other professional services. If legal or any other expert assistance is required, the services of a competent person should be sought. FROM A DECLARATION OF PARTICIPANTS JOINTLY ADOPTED BY A COMMITTEE OF THE AMERICAN BAR ASSOCIATION AND A COMMITTEE OF PUBLISHERS.

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LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA Black women's health : challenges and opportunities / editor, Yvonne Wesley. p. ; cm. Includes bibliographical references and index. ISBN 978-1-61668-420-4 (E-Book) 1. African American women--Health and hygiene. 2. Minorities--Health and hygiene. 3. African American women--Diseases--Risk factors. I. Wesley, Yvonne. [DNLM: 1. Women's Health--ethnology--United States. 2. African Americans--United States. 3. Minority Health--United States. WA 309 AA1 B627 2009] RA778.4.A36B53 2009 613.089'96073--dc22 2009032470

Published by Nova Science Publishers, Inc.    New York

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

CONTENTS Preface Chapter 1

Chapter 2

Chapter 3

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Chapter 4

vii Inequities in Health Care and African- American Women: Intersectional Applications of Research and Policy Laurie Nsiah-Jefferson

1

Genetics and the Health of African American Women: Finding the Cure for Disease and the Cure for Social Ills Deborah Cohen

57

Issues Affecting Health Care of African American Women with Disabilities Suzanne C. Smeltzer

79

When I Come to the End of My Journey: Correlates of Morale in the Elderly African-American Female Gloria Boseman

97

Chapter 5

Improving the Health of African American Women Maisha Amen and Basirah Taha

115

Chapter 6

Perceptions of Personal Health of Contemporary Black Women Minnie Campbell

131

Chapter 7

Postpartum Depression and African-American Women: The Cultural Context Valera A. Hascup

Chapter 8

Black Women, Stress and Pregnancy Yvonne Wesley

Chapter 9

Older Adults: Quality of Life Issues Derived from Late Onset Blindness Estelle A. Pisani

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147 187

207

vi Chapter 10

Contents Relationships among Pet Attachment Support and Human Health Outcomes in Women of Color Cheryl A. Krause-Parello

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Index

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PREFACE Women have always played a unique role in society. Seen as the nucleus of the family, textbooks about women have focused on their history in society, workplace rights, and the psychology of women. There have even been textbooks that look at women in politics. Representing less than 7% of the U. S. population, textbooks about the health of Black women are scarce. There are many books by and about Black women. However, a textbook that guides the learning experience of students about the health of Black women is rare. This Book provides qualitative and quantitative truth about Black women and their health. It offers a look at how social dimensions create layers of inequality that structure the relative position of Black women. Although not referred to as ‘evidenced based practice’, an underlying theme of this book bridges the gap between academic theory and action on the part of health care practitioners, policy makers, and researchers. This new and important book gives a broad look at the problems that African American women face both mentally and physically as related to health care. It also describes ways that practitioners, researchers, and the society as a whole can aid in alleviating the issues that African American women face on a daily basis. The book proposes several ways in which to achieve this goal. Chapter 1 - This chapter will address why intersectional research is an important tool for addressing inequities in health care for African-American women and how intersectional research can be used to influence health care policy to address health care inequities for this population. To this end, the goal of this study is to propose alternative, more appropriate mechanisms to address health care inequities for African-American women through innovative applications of research and policy that are specifically geared to their needs. The objectives of this chapter involve providing data on the context of Black women’s lives as it relates to health care access, quality of care, and deficiencies within health care inequities frameworks for addressing the needs of African-American women. Intersectional theories are presented to construct a conceptualization of research practice, particularly in regard to research methodologies, that can be utilized to establish health care equities. Concrete examples of how research conducted from an intersectional perspective are provided and demonstrate a positive influence on policy analysis, policy implementation and program implementation. The data for this study are collected from peer reviewed articles, key reports, newsletters, web-sites, magazines, newsletters and newspaper articles. The constant comparative method of data analysis is utilized. Chapter 2 - The advances in genetics have resulted in the ability to diagnose thousands of diseases and hold much promise for treatment and cure. This chapter provides a brief

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overview of genetics and its impact upon the concept of race. The historical context and legacy of the Eugenics Movement in the United States and its impact upon the health of African American women is then discussed. The third section then describes the social, legal and ethical issues that arose when the first community program to screen African Americans for a genetic disorder was implemented. The resulting policies that are now prominent in all genetic and research laws is discussed. The chapter concludes with an analysis of the knowledge and attitudes of African American women towards genetics and presents some implications for genetics impacting upon their health. Chapter 3 - This chapter addresses health care and health promotion in African-American women with disabilities. Multiple research studies have demonstrated that women with disabilities receive health care, including primary health care and preventive health screening, that is less aggressive than women without disabilities. To date, few of the readily available studies that have addressed this issue have specifically targeted African-American women with disabilities. This chapter will examine the body of research related to health care and health promotion in women with disabilities in general and that of African-American women with disabilities in particular. The inclusion and exclusion of African-American women in published studies will be examined. The social context related to the health and health care of this population will be examined as related to inclusion and exclusion of African-American women with disabilities in studies along with identifying any unique societal and healthrelated aspects that affect African-American women with disabilities. Recommendations are provided for research and for social policy. Chapter 4 - By 2030, one in three Americans is expected to be 55 years or older and one in five to be at least 65 years of age (Larue, 1992). Very elderly persons (85 years and older) now constitute one of the fastest growing groups in the country. Older African-American populations are growing even faster than the increasing population of older adults in general. Larson and Imai have noted that, in the United States racially diverse elderly populations are growing twice as fast as the general population. The population of individuals over the age of 65 years is estimated at 30 million today and expected to explode to over 80 million by the year 2050, with women outnumbering men (Byrd, 2006). Minority elders are expected to account for 50% of the elderly population and 12% will be the identified as non- Hispanic Black. There is no question that the disparities in health that exists across the board are emphasized in the minority elder population. This higher mortality rate in the minority elderly reflects the toll on their lives as a result of a lifetime of discrimination, public neglect and abuse. Many view the African –American female’s sum experiences as resulting in the culmination of a triple jeopardy, that is being old, African American and female – the victims of ageism, racism and sexism. If one considers that over fifty percent of elderly African American females also live in poverty then another descriptor can be added to the jeopardy – classism. In contrast to this gloomy perspective many other studies reveal that elderly African American females express a greater level of life satisfaction than do their comparable cohorts. Morale is a concept used to evaluate life satisfaction in the elderly. This chapter will focus particularly on correlates of morale in elderly African-American women. Theories of coping, social activity, and resilience as related to morale are explained as they connect to life satisfaction in this complex group.

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Preface

ix

Chapter 5 - Today, African American women experience disparate rates of heart disease, diabetes, and some forms of cancer. Many have become frustrated with what modern medicine has to offer. Integrative medicine provides an opportunity for African American women to become empowered, resilient, and partner with health care providers to improve their health. In 2002, about 62 percent of American adults—including 40 percent of women—used some sort of complementary and alternative medicine (CAM), everything from prayer to deep breathing to chiropractic, yoga, massage and nutritional approaches. Even if you take prayer out of the picture, one out of three people in the United States still used some form of CAM. And most paid for it themselves, since much is not covered by insurance. By the late 1990s, Americans were spending an estimated $270 billion a year out of pocket for CAM therapies, about as much as they spent on conventional medical approaches. The use of CAM appears to cross not only gender, but also age, racial and ethnic boundaries. An AARP telephone survey of more than 1,500 adults ages 50 and older conducted in late 2006 found that nearly two out of three reported using some form of CAM. If you include prayer in the definition of CAM, about 60 percent of Asians and Latinos, and 71 percent of African Americans use CAM. Integrative medicine—the use of both conventional and CAM approaches —means using the best of both, conventional established medical practices and traditional complementary and alternative modalities. This chapter provides relevant material for a qualitative study to examine the experience of African American women with integrative medicine and its influence upon their health status. This is particularly important since it will provide valuable insight into their values, lifestyles and health beliefs, all of which are important in providing quality health care. Chapter 6 - In recent years, health care literature has been replete with calls for cultural competency for health care providers and culturally appropriate strategies and interventions. Also, there has been increased interest in issues specifically related to women’s health. However, much of the literature that addresses the issue of culturally appropriate care for African Americans typically presents cultural information that does not differentiate between the beliefs of women and men and often excludes those from middle and upper middle socioeconomic groups. While it is true that African American men and women share experiences from a cultural perspective, African American women (AAW) have unique experiences that shape their perspectives on personal health and what it means to be healthy. Also, it has been suggested that a “womanist” theoretical approach, which takes into account the unique life experiences of AAW, be used when working with this population. In this chapter a small number of African American women were asked to describe various aspects of their beliefs about health. The descriptions suggest that more exploration of how African American women perceive health is necessary. Chapter 7 - Cultural implications for postpartum depression among African-American women cannot be discussed without first discussing the Western (U.S.) perspective of perinatal mood disorders. The purpose of this chapter is five fold. The first section (Section I) discusses postpartum depression from a Western perspective including discussion of perinatal mood disorders. The second section (Section II) examines the cultural context of postpartum depression including socio-anthropological perspectives of role transition to motherhood and its relationship to postpartum depression. The next section (Section III) discusses

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measurement of postpartum depression from a Western and non-Western cross-cultural perspective. The fourth section (Section IV) will discuss postpartum depression in AfricanAmerican women, and the final section (Section V) will present implications for health policy. The goal of this chapter will be to provide a comprehensive overview of postpartum depression based on the literature. The various cultural, social, and anthropological factors that influence the development of this tragic illness will be presented to develop a comprehensive understanding of postpartum depression within the cultural context. Chapter 8 - Stress has been attributed to poor health outcomes for many years. This illusive concept has been the subject of many studies. However, conceptual and empirical definitions of stress vary among authors. Moreover, intervening variables such as social support and coping may blur the effects of stress. The timing of when stress is measured has also been called into question. Nevertheless, the topic of stress continues to be relevant, especially for pregnant Black women. Seen as being strong and the backbone of many Black families, Black women are often times champions of tradition. They are also described by others as doubly oppressed. With race and gender not playing in their favor, Black women are known to have numerous sources of stress. Contemporary Black women authors who write fiction for and about Black women reveal many aspects of the Black experience. However, the link between fiction and empirical findings remains to be described especially in regard to stress and its effect on Black women’s health. Specifically, stress has been considered a risk factor for preterm labor that may help explain disparities in birth outcomes among Black and White women. But, what are the causes of stress for Black women as compared to other women? As we learn more about the relationship between psychological stress and preterm birth, we find that more researchers have linked physiological changes due to stress. Moreover, Collins speculates that health outcomes are mediated by stress perceptions. Rowley and colleagues suggests that the elimination of disparities in birth outcomes will require a multidisciplinary approach, one that illuminates biologic pathways, stressors, and social environment. The purpose of this chapter is to provide an overview of the literature discussing stress among Black women, and its relationship to preterm labor in this group of women. The chapter also provides evaluation results from a community based program designed to reduce stress among pregnant Black women and offers possible research questions for the future. Chapter 9 - Blindness complicates life. Self-reliance is challenged. Functional difficulties and emotional distress emerge. After being sighted for most of life and becoming blind later in life, individuals frequently experience ongoing sorrow related to changes they confront in a life that is now without vision. Driving this chapter are findings excerpted from a qualitative research study I conducted that analyzed a seventy minute audio-taped conversation among nine older adult visually impaired friends while they talked about their blindness and its impact on their quality of life and their health. Six of the nine participants were AfricanAmerican and Caribbean-American, three of whom were women. Discourse analysis, a qualitative methodological approach, examined the intersection of their discussion and social concepts and resulted in an increased sensitivity to the human experience of blindness. Findings indicated that late onset blindness profoundly impacted the person’s total sense of health and well being. Even sexual adequacy was identified as being influenced by blindness. Chronic sorrow was evidenced by ongoing grieving of their losses along with reminiscence

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about their lives when sighted. Healthcare providers will gain knowledge from this chapter that will enhance the understanding of visually impaired older adults. Chapter 10 - Pets and their relationship with humans affect human health. In some cultures pets are often seen as members of the family; however, this may not be true in all communities of color in the United States. The enhancement of human health is a fundamental focus in nursing practice and nurse researchers have an obligation to investigate the mechanisms that are associated with health so that through the evolution of this knowledge, evidence-based interventions can be designed and implemented. The utilization of pets as a supportive and coping resource is promising in the promotion of health in women of color. Moreover, research suggests that there are variations in pet attachment depending on ethnicity and cultural factors. The purpose of this chapter is to explore pet attachment and human health outcomes in women of color and ethnic variations in pet attachment. Implications for future research and public policy will be discussed.

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In: Black Women’s Health: Challenges and Opportunities ISBN 978-1-60876-453-2 Editor: Yvonne Wesley © 2009 Nova Science Publishers, Inc.

Chapter 1

INEQUITIES IN HEALTH CARE AND AFRICAN- AMERICAN WOMEN: INTERSECTIONAL APPLICATIONS OF RESEARCH AND POLICY Laurie Nsiah-Jefferson

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ABSTRACT This chapter will address why intersectional research is an important tool for addressing inequities in health care for African-American women and how intersectional research can be used to influence health care policy to address health care inequities for this population. To this end, the goal of this study is to propose alternative, more appropriate mechanisms to address health care inequities for African-American women through innovative applications of research and policy that are specifically geared to their needs. The objectives of this chapter involve providing data on the context of Black women’s lives as it relates to health care access, quality of care, and deficiencies within health care inequities frameworks for addressing the needs of African-American women. Intersectional theories are presented to construct a conceptualization of research practice, particularly in regard to research methodologies, that can be utilized to establish health care equities. Concrete examples of how research conducted from an intersectional perspective are provided and demonstrate a positive influence on policy analysis, policy implementation and program implementation. The data for this study are collected from peer reviewed articles, key reports, newsletters, web-sites, magazines, newsletters and newspaper articles. The constant comparative method of data analysis is utilized.

PART I. STUDY BACKGROUND Study Goal The goal of this study is to propose alternative, more appropriate mechanisms to address health care inequities for African-American women through innovative applications of

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research and policy that are specifically geared to their needs; through the use of an intersectional framework.

Research Questions This study was guided by three research questions: 1)Why is intersectional research an important tool for identifying and addressing inequities in health care for African- American women? 2) How can intersectional research be used to influence health policy to address health care inequities for African-American women? 3) How can effective health care policy be developed and implemented that will facilitate elimination of these inequities.

Research Objectives The research aims of this study were to: 1) Provide insights on the context of Black women’s lives through a presentation of their demographic profile; 3) Delineate the specific health status and health care inequities of African-American women; 4) Describe how the problem of health care inequities are framed; 5) Highlight the deficiencies in the framing of health care inequities in regard to the specific needs of African-American women; 6) Use intersectional approaches to construct a conceptualization of research and policy practice to address this challenge.

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Data Sources and Methodology Data Collection The data for this study were collected from a variety of sources; 1) Peer reviewed journal articles in the fields of public health, health policy, health services research, sociology, politics, women and gender studies, psychology, law, medicine and nursing; 2) government and organizational reports ; 3) books, primers, newsletters, magazines, newspapers and websites. Key terms for the data search included intersectionality, intersectional research, critical race theory/ feminism, womanism, double jeopardy, health policy, Black women’s health, health inequities, health disparities, public policy and health inequities, and disparities legislation. Data Analysis The constant comparative method (Strauss and Corbin, 1990, 1998, Lincoln and Guba, 1985), a qualitative based method of research was used. The purpose of the constant comparative method is to generate explicit categories that can be used to interpret data. This method uses logic to generate meaning (Grove, 1988). Procedures for the constant comparative method were developed by Lincoln and Guba (1985) and include: unitizing, categorizing, completing patterns and surfacing. When conducting constant comparative research, researchers cease data collection when four criteria are met.

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Inequities in Health Care and African- American Women • • • •

3

Incidents Categories become saturated Regularities emerge and a “sense of integration” is experienced by the researcher. Over-extension occurs and new information not related to the established viable categories is reached.

It is hoped that the data gathered through this study can be utilized to stimulate innovation and creative thinking about ways to conduct research and develop, and implement effective and appropriate health and social policy based on the realities of African-American women’s lives.

PART II. THE CONTEXT OF BLACK WOMEN’S LIVES

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African-American Women – Demographic Profile As we examine inequities in health care quality and access for Black women, it is important that health care quality and access is understood within the social, economic, and political context of their lives. Implicit in this assertion is an understanding of the role of power relations in the lives of African-American women. Of the 281.4 million persons living in the United States in 2002, African-American women represent 7% of the U.S population (United States Department of Health and Human Services, 2003). Because Black women represent a small percentage of this country’s population, and have little or no social status, it may be a challenge to ensure that their needs are taken seriously by policy-makers.1. PurdieVaugh (2008) argue that people with two or more subordinate identities do not fit the prototypes of their constituent subordinate groups, and will therefore experience intersectional invisibility. By intersectional invisibility we mean the general failure to fully recognize people with intersecting identities as members of their constituent groups. Intersectional invisibility also refers to the distortion of the intersectional persons’ characteristics in order to fit them into frameworks defined by prototypes of constituent identity groups. Accordingly ethnic minority women are individuals possessing intersecting subordinate identities. These individuals tend to be marginal members within marginalized groups. It is important to note that this invisibility does not necessarily make Black women worse off than the Black male. That is not the issue, and tends to distract from the problem at hand (Hancock, 2007). It is only to highlight that Black women have unique and different experiences that need to be acknowledged when addressing access and quality of health care. It can also be argued that when addressing health care inequities Black women are also in a place of political invisibility. They are neglected by allegedly inclusive advocacy groups on issues that predominantly affect people with intersecting subordinate identities. The leaders of groups advocating for the rights and welfare of politically marginalized communities, including ethnic minorities and women, often claim to represent the needs and concerns of all their constituents, including those with intersecting subordinate identities (Strolovitch, 2007). However, despite these good intentions, advocacy groups often wind up devoting 1

Although Black women as a group have been disenfranchised in many ways, they are a diverse group of women with many experiences, which cannot be captured by numbers alone (Gaston & Porter, 2001).

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proportionately less attention and resources to constituents with multiple subordinate identities than they do to their more prototypical constituents who have only a single subordinate identity (Strolovitch, 2007)2. Given the reality of intersectional and political invisibility it is imperative that we take into consideration the unique position and context of the lives of African American women to better address their unique health care needs, see figure 1 which highlights women in America by race/ethnicity.

Figure 1. Racial and ethnic percentages of females in the United States based on the 50% of women comprising the total population in the United States. Source: U.S. Department of the Census, 2000.

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Demographic Profile of African-American Women On average, Black women experience high poverty, low educational attainment, subordinate positions in the labor market, and single marital status. In 2007, 13.8% of all women in the United States were poor; however 26.5% of Black women lived in poverty, as compared to 9% of White women. Part of this poverty may be related to the fact that the unemployment rate for Black women is 10% as compared to 4% for White women (U.S. Census Bureau, Current Population Survey, 2008). And as our economy worsens, it is expected that this rate will increase. Many Black women are single. Forty-seven percent of Black women between ages 30-34 in 2004 were never married (U.S. Census Bureau 2007). Although African-American women are more likely than African-American men to have a college degree (18% vs. 16%), AfricanAmerican women are less likely to have a college degree than White, non-Hispanic women (27%) or White men (32%). Sixty-two percent of Black women are in the labor force, compared to 60% of White women; however, the jobs that Black women have in the labor force differ significantly from jobs held by White non-Hispanic women. White women are more likely than Black women to hold managerial/ professional jobs (37% vs. 26%) and technical, sales, and administrative jobs (40% vs. 36%). Black women hold more service jobs than White, Non-hispanic women - 40% vs.36% (U.S. Department of the Census, 2000). 2

Framing of birth control practice by reproductive health organizations that utilize a universal definition of gender neglects experiences of women from different race, class, or national backgrounds (Mohanty 1992), and misses the history and philosophy of birth control being used for population control or eugenic purposes. Lastly, it assumes that birth control or reproductive practices have agreed upon definitions. If we look at birth control and reproduction through an intersectional framework, these points are where the analysis begins.

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Inequities in Health Care and African- American Women

5

The Social Context of Black Women’s Lives

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“Believing what I know and not what I am told, and beginning to understand the divide. I am a Black woman. I am moral. I am intelligent. I am valuable. But the majority of the messages I get all say that I’m not…. I don’t know how I do it” (Jones and Shorter-Gooden, 2003).

While most people of color, and African-Americans in particular, are perceived through a distorted lens, as the above quote illustrates, Black women are routinely defined by a specific set of grotesque caricatures that are reductive, inaccurate, and unfair. Gendered racist stereotypes of Black women include the emasculating Sapphire, the desexualized mammy, the scheming temptress Jezebel, and the over-achiever Black lady (Essed 2001; hooks, 1981; Jackson, Phillips, Hogue, and Curry-Owens, 2001; Jean and Feagin, 1998). In a study entitled the African-American Women’s Voices Project, Jones and Shorter-Gooden (2003) conducted an extensive research project designed to explore the impact of racism and sexism on Black women in America. This study was one of the largest to date on the intersection of race and gender in the lives of African-American women (Jones and Shorter-Gooden, 2003). The study explored African-American women’s experiences of racial and gender stereotyping, bias and discrimination. The authors examined the impact of Black women’s experiences on their lives: what it feels like; and how they act and respond to it. They concluded that, “Sexism and racism are so potent and so intertwined that they end up hidden within one another like pieces of sharp ice that collect in a snowball careening down a hill. They build on one another”(Jones and Shorter-Gooden, 2003). Results from this study showed that more than 90% of the women surveyed had experienced racial discrimination and 10% specifically remember being called “nigger” at one point in their lives. The study further demonstrated that gender discrimination against Black women is pervasive and is experienced most frequently at work, but also in other venues. Many Black women submerge their talents to support Black men. Moreover, sexual abuse and harassment of Black women is all too frequent. Black women also have increasing pressure to meet conventional beauty standards; are at a high risk for depression; and some feel discriminated against within their churches (Jones and Shorter-Gooden, 2003). In addition, a June 2002 Gallup poll of 1010 participants reported that 61% of Black women were dissatisfied with “how Blacks were treated in society” as compared to 47% of Black men. Forty-eight percent of Black women, as compared to 26% of White women, were dissatisfied with “how women are treated in society.” (Conversation between Charisse Jones with Judith Keneman of the Gallop Organization in August 2002). These experiences of racism and sexism among African-American women, in concert with relatively low income and social status, environmental stress, and health risk factors (especially overweight and obesity) lead to lower life expectancy and poor health status, including depression and other mental health disorders, (Bicknell, 2002; Branchflower and Oswald, 2000; Johnson and Fulp, 2002; Jones and Shorter-Gooden, 2003; Schulz, Isreal, Williams, Parker, Becker, and et.al, 2000; Schulz, Parker, Isreal, and Fisher, 2001; U.S. Department of Health and Human Services Office of Women's Health, 2003; U.S. Census Buearu, 2007). The Jones and Shorter-Gooden (2003) study specifically notes that the rates of hypertension, depression and AIDS among African-American women have reached crisis proportions. Some specific examples will be highlighted below.

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PART III. HEALTH STATUS, ACCESS AND QUALITY OF CARE FOR BLACK WOMEN The demographic and social status of Black women affects, not only their health status, as highlighted below, but also their access to care and health care treatment. Intervening variables for these phenomena are poor access to care and inequities in health care treatment and quality (Abramovitz, 2002; Correa - de- Araujo, McDermott, and Moy, 2006; Correa de- Araujo, Stevens, Moy, Nilasina, Chesley, and McDermott, 2006; Henry J. Kaiser Family Foundation, 2004). Women who do not have access to good health care or who do not receive high quality care risk having their health problems remain undetected or further exacerbated by this inadequate care. In addition, there may be barriers to seeking care, based on racial or gender discrimination, distrust of the system, lack of income, insurance, social status, or other factors, which may again interfere with the quality of care African-American women receive. (Correa - de- Araujo, McDermott, Moy, 2006; Correa – de- Araujo, Stevens, Moy, Nilasino, Chesley, McDermott, 2006, Agency for Health Care Quality and Treatment, 2005). Obtaining a better understanding of Black women’s lives, and how their lives affect access to and involvement in the health care system is crucial.

A Legacy of Poor Health Care

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On a spring day in 1983, hundreds of Black women gathered in Atlanta, Georgia on the campus of Spelman College for the first National Conference on Black Women's Health. Women, young and old, came from all across the country to voice their frustration at the lack of attention to Black women's health and health care. (Avery, 2002). Unfortunately, more than two decades after the conference, Black women are still at the bottom of the health rung. Despite these facts most Black women, generally believe the state of their health has improved over the past 20 years. Nevertheless, little has changed; 2008 does not look much different than 1994 or 1984 in terms of the overall health status or health access and quality for Black women. In fact, in some ways things have gotten worse over the past 20 years (Avery, 2002).

Life Expectancy While life expectancy has nearly doubled for all women over the last century, Black women still live roughly five fewer years than White women (Agency for Health Care Quality and Research [AHRQ], 2005).

Health Status Heart disease and breast cancer. Heart disease is still the number one killer of Black women, with 28 percent dying from the illness. In 1980, death from heart disease was 50 percent higher among Black women than White women. In 2004, the disparity increased to 67

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percent. Additionally, though Black women are diagnosed with breast cancer less often than women of other races, they are diagnosed at younger ages and with more aggressive forms of the disease. In fact, Black women are 28 percent more likely to die of breast cancer than White women (AHRQ, 2005). Overweight and obesity. Obesity is also a major problem among Black women. According to the Centers for Disease Control and Prevention's 1999-2000 National Health and Nutrition Examination Survey, more than 50 percent of Black women over the age of 18 are considered overweight. Obesity can lead to a number of health problems, including increased risk of stroke, heart disease, hypertension, some cancers, and diabetes, which affect one in four Black women over age 55 (Wee, McCarthy, Davis and Philips, 2004) 3 HIV/AIDS and other diseases. Other diseases, such as lupus and HIV/AIDS, also affect Black women disproportionately (AHRQ, 2005). For example, the HIV rate for AfricanAmerican women is 20 times higher than for White women (CDC, 2008) Health care access. According to the Census Bureau, more than 20% of AfricanAmericans are uninsured, compared with 15 percent of the overall population. Many AfricanAmerican women either work part-time or in industries that do not offer health insurance (Rockeymoore, 2003). As a result, a number of Black women have to choose between medical necessities, such as prescriptions and annual physician exams, and basic life essentials, such as food. Given such a choice, these individuals understandably choose food, thus neglecting their health and well-being. Health care quality. Experts have also found that medical bias at the provider, institutional, and systems levels is a cause of health disparities. For example, research has shown that Black women were less likely to have access to life-saving therapies for heart attacks than other women and less likely to be referred to methods that diagnose coronary artery disease (Canto, Allison, Keife, Fincher, and Farmer, 2000). In a landmark study by Shulman and colleagues, it was found that Black men and White women with chest pain were referred for cardiac catheterization 40% less often than White men. The disparity was greatest for Black women, who were referred 60% less often than White men. Cardiac catheterization is considered to be the "gold standard" test for diagnosing coronary artery disease. A more recent study has confirmed these results and provided additional data particularly as it relates to acute myocardial infarction (AMI), diabetes, and end stage renal disease. In the AMI group, non-Hispanic Black and Hispanic patients of both genders were less likely to receive aspirin or beta-blockers than non-Hispanic Whites. Rates for smoking cessation counseling were among the lowest among non-Hispanic Blacks and Hispanics with AMI– diabetes and non-Hispanic Blacks with AMI–hypertension/ESRD. (Correa - de- Araujo, McDermott, and Moy, 2006). Women and minorities recovering from acute ischemic coronary events reported receiving much less information than they expected from health care professionals, and only a few indicated that the clinical decision-making process was shared with them (Steward, Abby, Shnek, Irvine, and Grace, 2004).

3

The percentage of those who are overweight includes those who are obese. “Overweight” is defined as a BMI (body mass index) of 25 or more. Obese is defined as a BMI of 30 or above. See U.S. Census Bureau (2002). Table No. 197. Percent of U.S adults who are overweight and percent who are obese: 1998.

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PART IV. FRAMING SOCIAL PROBLEMS AND HEALTH CARE DISPARITIES Framing any type of problem defines their possible causes, and implies strategies to address the problem. In turn, how problems are framed concerning health care inequities also relates to how their causes and solutions are conceptualized. As we consider addressing inequities in health care for African-American women we must consider how the problem is framed, and utilize that understanding as part of our analysis to addressing the problem. First, a discussion of frameworks will be provided, followed by its application to health care inequities in general, and as it relates to health care inequities for African-American women in particular.

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Methods for Framing a Problem There are usually two ways of framing policy, traditional or interpretive. Traditional framing is considered to be “rational” and “behavioral” in nature. Examples of rational policy framing relate to costs and benefits, efficiencies, and calculated impacts. (Lakoff, 2006; Schon and Rein, 1994; The Rockridge Institute, 2006). More and more, scholars of public policy have moved away from framing public policy as fundamentally rational or behavioral in nature and have moved toward interpretive models of policy analysis (Baachi, 1999; Edelman, 1977, 1988; Hilgartner and Bosk, 1988; Yanow, 1993, 1996, 2000). Researchers and scholars argue that policy is more than just a process that can be studied “objectively” through the gathering of “facts” and testing hypotheses. Policy is also more than just the distribution and redistribution of material goods, or even the weighing of the costs and benefits of solutions and their alternatives (Yanow, 1996, 2000). Policy can also serve as a metaphor that expresses and validates the things that society values and reveres. It is these values that determine the issues defined as social problems that are subsequently addressed through governmental, institutional or other interventions. These values also define eligibility for such interventions (Schneider and Ingram, 1993), essentially determining who is deserving of such services and why there is the need for awards or sanctions toward a particular group. Policy stories are integral to the process of considering the impact of policy framing on health care inequities. Stories are based on framing. Price (2003) argues that policy stories not only help to “create reality” but also create boundaries of participation in the policy-making process. Policy stories define what the issues are and which ones are important enough to warrant attention. Policy stories also determine who can and cannot participate. They can even determine who can tell which stories and when (Price, 2003). Low-income and minority women are marginalized as participants in the public policy process (Price, 2003). This is not only pertinent to how dominant groups address issues relating to AfricanAmerican women, but also how minority advocacy organizations think about issues concerning Black women, including inequities in health care. Issues that primarily affect the lives of singular subordinate members (such as Black men) are more easily framed as issues that affect the group as a whole than are issues that primarily affect members with two or more intersecting subordinate identities (Cohen, 1999; Strolovitch, 2007). Illustrating this

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phenomenon in the context of issues affecting the Black community, Cohen (1999) writes, “In actuality, both inside and outside of Black communities, certain segments of the population are privileged with regard to the definition of political agendas”. For example, issues affecting men are often presented as representative of the condition of an entire community and thus worthy of a group response4. The fact that advocacy groups can more easily frame issues that affect subgroups with a single subordinate identity as being important for the group as a whole has concrete consequences for the allocation of attention and resources. For instance, in a survey of the officers of advocacy groups, Strolovitch (2007) found that these organizations are relatively inactive when it came to issues affecting intersectionally subordinate subgroups compared to issues that affect members with a single subordinate identity. However, the important point is that existing advocacy groups claim to represent everyone with a given subordinate identity, but in fact primarily represent the needs of constituents who have a single subordinate identity. Advocacy groups also often assume that issues that primarily affect intersectionally subordinate constituents will be attended to by other organizations (Strolovitch, 2007). For example, Black advocacy groups may assume that issues specifically affecting Black women will be taken up by women’s groups, while women’s groups in turn may assume that these issues will be taken up by Black advocacy groups and thus the issues of Black women are neglected by both of the groups that claim to represent them. This illusory inclusivity of advocacy groups that primarily focus on the issues of constituents with a single subordinate identity likely gives them many advantages in the competition for resources and attention compared to advocacy groups that represent the seemingly more narrow interests of intersecting subordinate identities. Hancock (2007) infers that Black women who should theoeretically benefit from either racially or gender targeted public policy, in reality benefit from neither. She highlights that instead of designing policies that create a talented tenth or fortunate fifth of a marginalized group, we should redesign policies to ensure that all members of any marginalized group are empowered. To accomplish this she suggests looking at multi-level and multidimensional policy levers operating on the individual and institutional level, utilizing specific interventions to address a broad social program, such as health disparities. Before the discussion on framing is completed, it is also important to note, that as part of framing in an interpretive framework, there are conflicting notions of fairness, and how one arrives at definitions of fairness in health care policy discourse. Fairness is not color blind. Critical frameworks clearly challenge the dominant ideology of U.S. institutions’ claims toward objectivity, color blindness, and neutrality. Guinier and Torres (2002) discuss the pitfalls of color-blind approaches. The discourse of color-blindness focuses on managing the appearance of formal equality without worrying about the consequences of real-world inequality. Proponents of color-blind ethos define freedom and inequality exclusively in terms of the autonomous – some would say atomized individual (Freedman, 1999; Williams, 1992). In a color-blind worldview, race is all about skin color and gender is just about physical 4

Recently in Black communities the troubling and desperate condition of young Black men, who in increasing numbers face homicide, incarceration, and constant unemployment as their only “life” options, has been represented as a marker by which we can evaluate the condition of the whole group. The similarly disturbing and life-threatening condition of young Black women, who confront teenage pregnancy, state backlash, and (increasingly) incarceration, however, is not portrayed as an equally effective and encompassing symbol of the circumstances of Black communities. (p. 11).

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characteristics. Color-blind, worldviews neglect to include factors of social status and history of power, and instead offer a false construction. Appiah and Guttman (1998) also address the issue of race-blind politics in their book, Color conscious; The political morality of race. The authors note, “if we assume an ideal society, with no legacy of racial injustice, then there is everything to be said about a colorblind standard for institutional or public policy” (p 10.). However, the authors continue by noting that:

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Color-blind policies treat individuals fairly when racism and other forms of disadvantage no longer affect the lives of citizens. But when color continues to exert a major influence on the ability of citizens to participate equally in public and private life, as it surely does in America, color conscious policies may be the only way to afford individuals the fair treatment that is their moral due. Fairness is not color-blindness (p10).

The authors insist on the fundamental principal of justice by which public policies must be judged, not based on an ideal world – but the real world (Appiah and Guttman, 1996). To extend this argument, when we think about race in policy it also cannot be gender-blind, or blind to their intersections, among other identities. This begs us to consider how we think about inequities in health care from an intersectional perspective, and why it is important to do so. The way in which class and race interact with gender to produce health continues to be a challenge for theory and policy (Kreiger and Fee, 1994). It therefore requires visibility not blindness. An intersectional approach utilizes a targeted versus a gender or race blind approach. It clearly acknowledges the role of intersectional subordination, acknowledges the dangers that interpretive policy framing may have on marginalized racial and gender groups in society, and acknowledges how this relates to distributive justice in regard to key resources needed for these communities. An intersectional approach to addressing health care inequities forces us to pay attention to how problems are framed, and how policy is made based on these frames. It is critical to consider how inequities in health care for African-American women are viewed and framed based on the above stated realities. It also challenges policy makers to understand and acknowledge how race, class, and gender relations intertwine and are expressed in disparate health care treatment for AfricanAmerican women. Further, there is a focus on how gender, class and race structure social relationships in ways that produce differentials in health care within particular contexts. Understanding context moves beyond documenting relationships toward apprehending the ways that these relationships are created and maintained, and thus understanding ways that may be modified to reduce inequities in health care (Schulz and Mullings, 2006).

Framing the Problem of Health Care Inequities First, it is important to delineate the general ways that racial/ethnic health care inequities are framed in the policy arena, and follow this with a discussion of the deficiencies of those frames for African-American women. In addition, applications of these frames will be illustrated by deconstructing national policy reports on inequities in health care. There are two major frameworks, quality of care and social justice that relate to four specific perspectives in

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response to the problem of health care inequities. Each of these perspectives has implications for policy and practice in addressing racial/ethnic inequities in health care treatment. They lead to specific action in the governmental policy, academic, corporate, institutional, and clinical arenas. The first three perspectives reside within the quality of care rubric. The quality as technical perspective implicitly suggests that, if we improve quality of care for all patients, minority access to equal treatment will follow (Nsiah-Jefferson, 2006). It is implicit because race is not part of the discourse in this model. It is a color-blind approach to addressing inequities in care (Guinier andTorres, 2002). The cultural competency perspective focuses on the cultural background and beliefs of the patient, as well as the behaviors of healthcare providers in the clinical encounter, in relation to the patient’s beliefs and preferences (Nsiah-Jefferson, 2006). This perspective may address organizational, systematic, or clinical cultural competence and utilizes several strategies including: training and education; communications strategies; addressing and institutionalizing structural processes of care; and health care workforce development (Betancourt, 2006). Similarly, the population - based quality of care perspective clearly acknowledges racial/ethnic inequity in health care as an issue and suggests disaggregating data by race/ethnicity and utilizing targeted approaches to improve access to equal treatment. It also proposes both research and policy action to address these inequities (Smedley, Stith, and Butler, 2003). Although the cultural and population perspectives are both within the quality of care framework, these two models differ from the quality as technical perspective because in the latter two models, racial/ethnic differences in regard to quality of care are recognized, and there is support for targeted interventions. All of the above mentioned perspectives generally do not utilize a social structural analysis of racism and discrimination (Nsiah-Jefferson, 2006). The social justice perspective utilizes a social/political and structural analysis of race and racism as a core reason for inequities in health care. This perspective recommends interventions that take these factors into consideration when implementing policy, programs, and services. This perspective utilizes an equity-justice framework that acknowledges the history of racism and racial bias and their current realities in the health care system, for communities of color. The racial justice perspective seeks to develop and institutionalize clinical and organizational systems, to push toward eliminating racism and/or racial bias that are purported to be a core reason for inequities in health status and health care. This model may or may not address cultural differences (Nsiah-Jefferson, 2006).

Deficiencies in the Health Care Disparities Frameworks for Addressing Intersectionality The above described frameworks for addressing health care inequities have encountered some criticism in regard to how well they explain the causes of, and provide strategies to address the problem of health care inequities in general (Gamble and Stone, 2006). However, regardless of the prior critiques of these frameworks, none consider the intersection of race and gender – a glaring omission given the reality that a person’s gender may strongly influence their social context and lived experience, all of which may ultimately impact their access to health care and health care quality.

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When we think about the need for an intersectional approach for institutions and government we need to approach the problem by: 1) critiquing the general frames to address inequities in care and how they do or do not relate to intersectionality; 2) showing what happens when intersectional frames are not used in health care inequities frameworks, and 3) providing evidence of what would change if intersectionality as a frame were used. As we think about African-American women and the four perspectives highlighted above, it is important to acknowledge that none of these frameworks adequately addresses intersectionality. The discussion that follows identifies the deficiencies in these general frameworks for addressing health care inequities among African-American women. The quality as technical perspective. As alluded to above, the quality as technical approach treats gender and the intersection of race and gender, the same way that it treats race – which is not at all. The assumption is that interventions to improve quality of care for all are equally effective to solve the problem for all racial/ethnic groups. Even if there is an acknowledgement of differences, strategies will not deviate from the universal. Those who espouse this perspective agree that a “raising tide lifts all boats,” and therefore, from a policy perspective, supporters of the quality as technical perspective are in favor of neutrality rather than a targeted approach, as a method to address inequities in care. The population-based perspectives. Those who agree with the population-based perspective will acknowledge differences in health by gender and race, and will encourage disaggregating of data by race and gender, and the possibility of looking at the impact of their interaction. Nevertheless, they will not acknowledge and/or explore social/structural origins of gendered racism and discrimination, and its impact on health care – at least not past the point of saying that poverty and low education and similar factors may cause or facilitate the problem of inequities. This perspective does not focus on uncovering the mechanisms for these problems of poverty and race and how those mechanisms facilitate inequities in health care. The cultural competency perspective. It is more difficult to think about how the cultural competency perspective would relate to Black women. However, one might hypothesize that it would address how health care should be provided to African-American women in their roles as women and African-Americans; however, it would not acknowledge the social/structural implications of African-American women’s roles and social status on the manner in which health care is provided, and Black women’s responses to health care and health care delivery. We need to look at factors that structure systems of domination and oppression which in turn affect social and health status and care (Hankivsky and Christoffersen, 2008). The social justice perspective. Focuses on social construction of race, that is, the “force of history, power, and political economy in constructing and reconstructing the boundaries, categories, institutional configurations, and experiences of race”. It focuses on the emergence of racial classification and the institutions that produce and reproduce inequity (Harrison, 1998). Intersectionality utilizes a social justice framework. However, it goes further by addressing the way in which race and class intersect with gender to produce health care inequities (Schulz and Mullings, 2006). Therefore its tenets are in concert with this perspective. Feminist intersectional scholarship utilizes the social justice frame by taking on a research stance of engaged subjectivity and reflectivity – critically reflecting throughout the research process, the impact of the social location of the researcher and the researched. In most instances, methods focus less on measurement and quantification and more on

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identifying and holistically representing meaning in the lives of the researched and in institutional arrangements (Weber, 2006). Within this framework inequities are conceived as social constructions, situated in social contexts and structures beyond the individual – in societies, institutions, communities, and families, and are characterized as power, not simply resources. They are also perceived as differences between dominant and subordinate groups. The primary analytic goal is not to separate the effects of inequities from other determinants of health and health care, or to identify proximate causes of health inequities. Instead it is to explicate the processes through which multiple social inequities of race, gender, and social class are simultaneously generated, maintained and challenged at the institutional and individual levels. It is by shaping the health and health care services of societies, communities and individuals, that broad systems of inequities finally become targets for intervention (Weber, 2006). In addition, the social justice perspectives relating to intersectionality and health inequities functions by: “joining abstract thought with concrete action” (Collins 1990). The ultimate goal is to advance this issue. This action is intended to create coalitions and strategic alliances to address inequities in health care and access to care (Burgess-Proctor 2006)

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Evidence of Failures to Address Intersectionality Insufficient attention to intersectionality in much of the health literature has significant human costs, because those affected most negatively tend to be those who are poorest and most oppressed by gender and other forms of social inequality. The program and policy costs are also likely to be high in terms of poorly functioning programs, ineffective poverty alleviation and social and health policy (Iyer, Sen, Ostlin, 2008). When we look at health care inequities by race and gender, it does not tell us whether the burden of this inequity is borne equally by Black men or women, young women or older women. Nor does it tell us how the burden of health inequity is shared among different members of poor households. Are Black men, women, widows and income-earning youths equally trapped by medical poverty? Are they treated alike in the event of catastrophic illness or injury? When health costs go up significantly, as they have been, do households tighten the belt equally for women and men? And are these patterns similar across different income quintiles? Even as we raise these questions, their potential implications become obvious. If the answers to such questions are in the negative, this poses a challenge for policy to ensure not only equity across but also and simultaneously within households (Sen, Ostlin, George, 2008). When taking a closer look at the Institute of Medicine (IOM) report, Unequal treatment: Confronting racial and ethnic disparities in health (Smedley, Stith, and Nelson, 2003) released by IOM in 2003, it is apparent that gendered analysis has been omitted. This report concluded that racial and ethnic disparities in race exist and have serious outcomes for communities of color (Smedley, Stith, and Nelson, 2003). This report illustrates the way these disparities are defined, conceptualized, and studied by mainstream health policy experts and researchers wedded to the positivist biomedical model (which relates to the population-based perspective mentioned above). This model often results in a research and a policy discourse that comparatively impoverishes the ability of health policy experts to understand causes and

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experiences of, or solutions to health disparities in general, and especially with regard to intersectional issues. According to Morgen (2006) “there are at least three significant problems, with the IOM report. First, the report extracts race/ethnicity from the complex matrix of power relations (gender, SES, nationality, religion) that characterize and shape inequality in the United States. Second, the report reduces structural/systematic inequities to individual problems of bias, stereotyping and discriminatory behavior (whether it relates to gender, race or some other combination). Third, the report frames issues in a putatively objective, scientific manner that tends to mute the urgency and mask the human costs of injustice”. Morgan further notes, “rather than analyzing the intersectional relations between and among, race, ethnicity, gender, and class, as these shape and are reflected in racial and ethnic disparities in health care, the IOM report focuses exclusively on race and ethnicity, extracting race/ethnicity from its enmeshment in a complex system of power and inequality and sidelining questions about gender and class differences within and between racial groups. Race and class are not used as analytic categories in presenting or discussing research findings or policy recommendations. This is important because people are not just racialized beings, they are different genders and classes, and live in varying contexts and circumstances. The background papers for the IOM Report, with the exception of a few, did not highlight gender specific issues or comparisons. A content analysis of this report was conducted on the words race, class, gender, and racism, and it was noted that there was very little discussion of women, gender and class in the 27 page executive summary – the most widely read part of the report (Morgen, 2006). The IOM committee defined, as the best evidence of racial/ethnic disparities, those differences that were significant when studies controlled for gender and class (Smedley, Stith, and Nelson, 2003). By definition, because racial and ethnic disparities were determined to be scientifically valid only once they were separated from other social relations of power that affect health status and health care, the committee could not develop an intersectional analysis. Because positivist biomedical research operationalizes gender, race, ethnicity, and class as discrete variables and controls one or more of these variables in order to determine correlational or causal relationships, the definitions and practices of what is perceived to be rigorous “science” work against intersectional analysis. Moreover, the failure to recognize that men and women of color experience the burdens of disparities differently, and that poor women of color are the most vulnerable and marginalized people in our society, means that the report not only fails to examine women of color as an analytic category, but also that the particular issues facing women of color are effaced (Morgen, 2006; Weber, 2006). The Equal treatment report (Sohler, Wolmsky, Lubetkin, and Geiger, 2003) utilized a social justice framework, and clearly articulated the issue of racism and social inequities as causes of health care inequities. The report espouses clear, comprehensive strategies on several levels to address the problem; however, there is no intersectional focus. The author of this report (possibly recognizing the missing intersectional focus) published a subsequent analysis of what types of research or exploration should be addressed with this focus (Geiger, 2006). Another report, Policy challenges and opportunities in closing the racial/ethnic divide in health care (The Henry J. Kaiser Family Foundation, March 2005), also did not provide an intersectional analysis. Not surprisingly, a government report released in 1999; The health care challenge: Acknowledging disparity, confronting discrimination and ensuring equality

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(US Commission on Civil Rights, 1998), did utilize a race-gender analysis. This may be because this report utilized a social justice/discrimination framework, including story-telling through interviews which conveyed the true experiences of those working in the health care system (Gamble and Stone, 2006). Other key reports could have been reviewed as well; however, in the interest of brevity, the author reports that, with the exception of the Agency for Health Care Quality and Research (AHRQ)’National Health Care Disparities report, most key national reports in the country do not have a race/gender or intersectional analysis. One of the reasons that the AHRQ report did have a race/gender analysis is because it focused on several priority populations (including women and minorities) and analyzed gender data by race/ethnicity and race/ethnicity data by gender in some instances. And although the AHRQ report provided race/gender comparisons, there was little social structural analysis, since AHRQ’s focus is primarily on quality of care (Agency for Health Care Research and Quality, 2005).

PART V. DEFINING AND DECONSTRUCTING INTERSECTIONALITY Now that we have a brief idea about the merits of an intersectional approach, it is important to define this perspective more comprehensively and provide an explanation of its origins. This will enable the reader to think about how intersectionality can be used in research and policy to address health care inequities for African-American women. The discussion, forward on, intersperses general discussions about intersectionality with its application to health care inequities.

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Intersectionality – Its Origins According to the Working Group on Women and Human Rights, intersectional analysis is not a new concept, but is based on fundamental principles of international and human rights law (Working Group on Women and Human Rights, 2002). This concept was coined in response to the International Convention of the Elimination of All Forms of Racial Discrimination - ICERD (Office of the High Commissioner for Human Rights, 1969) document, that had declared that the principle of non-discrimination on the basis of race, is gender blind. In this document discrimination was defined as “distinction, exclusion, restriction or preference on the basis of race, color, descent, and national origin” (p.3). In order to clarify this definition, the ICERD Committee stated in General Comment (no.25) on Gender-Related Dimensions in Racial Discrimination that, “racial discrimination does not always affect men and women similarly” (Office of the High Commissioner for Human Rights, 2000; Working Group on Women and Human Rights, 2002). Despite the above described events, it is important to point out that, before the United Nations coined the term intersectionality, many feminists of color had already been writing about the concept (Mullings and Schulz, 2006). One of the central principles under girding intersectional conceptions is the intersecting systems of power, between dominant and subordinate groups. Power relationships usually exist at the micro and macro-levels of institutions and the microindividual level of interpersonal relationships.

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It might be important here to define the micro and macro level. The micro-level can refer to the experiences of women receiving care in the health care system. It can also be defined as a focus on the individuals providing the health care, and their interactions with the women. The macro-level relates to the institutions and the various systems and broader social relations that impact on the institutions, and the provision of care directly or indirectly. The relationships between these systems cannot be separated, and again ultimately the institution and structures that support and monitor these institutions are responsible for equitable provider behavior.

Intersectionality – Definitions

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Defining intersectionality and its different categories will help to locate their forms as they manifest themselves in the lives of women of color in health care and other sectors. Intersectionality can be thought of as a research and policy paradigm (Hancock, 2007) for fundamentally altering the ways in which social problems are identified, experienced and understood so as to reflect the multiplicity of lived experiences (Oxman- Martinez et al, 2002:23). At the same time, intersectionality is not prescriptive but rather conceptualized as “a loose set of ideas about how to undertake research and design, and implement public and health policy” (Dhamoon, 2008). Further, the concept of intersectionality seeks to capture both the structural and dynamic consequences of the intersection between two or more forms of discrimination/bias or systems of subordination. It addresses, for instance, the manner in which racism, patriarchy, economic disadvantage, and other types of discrimination create inequality that structures the relative position of women and men, races, and other groups. Most racially marginalized women’s experiences of intersectional subordination are not adequately analyzed or addressed by traditional concepts of race and gender discrimination (Crenshaw, 1990, 1995, 2000; Patel, 2001). In an attempt to move beyond a single definition of intersectionality, Dhamoon ( 2008) discusses “ intersectional-type approaches representing different dimensions of socio-political life; 1) identities of individuals or social groups, 2) categories of difference; 3) systems of domination, and 4) processes of subject formation. According to Dhamoon ‘all four can encompass an examination of how subjects construct, develop, negotiate their own social locations, and those of others in the context of power. But each emphasizes something different in our understanding of subject formation and power (2008, p.12).

Intersectionality -- Identities of Individuals or Social Groups According to the Primer of Intersectionality (Hankivsky, 2008) “one basic assumption of intersectionality is that different dimensions of social life cannot be separated into discrete or pure strands” (Brah and Phoneix, 2004). An intersectional-type approach focusing on individuals or social groups identified as oppressed would entail exploring the unique intersections of single dimensions of multiple axes of difference (e.g. able-bodied, working class, African-Americans) (Hankivsky 2008). This perspective is grounded in an ‘experienced-based epistemology (Simien, 2007) which assumes that human experiences are shaped by interlocking forms of oppression that change over place and time. To avoid adding

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or laying social locations, intersectionality can be viewed as an oscillating net or web where there are many spaces/shapes for renegotiation and resistance (Quote from T. Rennie Warburton, October 7, 2002). This is the most dominant view of intersectionality, it focuses on individual or social groups’ lived experiences, which in and of itself essentializes marginalized groups (Hanvisky, 2008).

Intersectionality -- Categories of Difference In the Primer on Intersectionality it is noted that identities are dynamic, historically grounded, socially constructed and work at both the micro and macro levels (Burgess-Proctor, 2006; Weber and Perra-Medina, 2003). Traditionally social categories are seen as static and as being the cause of certain behaviors, but from the intersectional perspective categories are seen as the effect of behavior and are constantly constructed and deconstructed, and reconstructed. The concept of identity is frequently conflated with that of social categories of difference (race, class, religion, gender; Yal-Davis, 2006). Whereas identity refers to an individual or social group’s unique social location along single dimensions of multiple categories, the study of the categories of difference typically entails exploration of multiple dimensions of multiple categories. For instance referring to the intercategorical approach, it entails using pre-existing categories of difference to explore inequalities within and across social groups such as comparing Black women with poor White men. An intersectional analysis assuming an intra-categorical approach does not seek to add categories of analysis to one another – e.g. gender, race, class, sexuality (Brewe, 1993; Zerai, 2000), but instead, seeks to understand what is created and experienced at the intersection of two or more axes of oppression. The study of categories of differences has been criticized for largely focusing on the race, class, gender trinity (Angus, 2007; Dhamoon, 2008; Hancock, 2007).

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Intersectionality -- Systems of Domination and Processes of Subject Formation The focus of an intersectionality-type analysis “is not on the intersection itself, but what the intersection reveals about power (Dhamoon, 2008). Central to the intersectional perspective are questions of “deprivation, privilege, discrimination, and aspirations, to permit characterizing people more fully, and as more than the sum or product of their parts’ (Zierler and Kreiger, 1995). As Bogard explains “we exist in social contexts created by the intersections of systems of power….oppression (1999). Similarly Yuval Davis explains that because social positions are relational, attention to social power axes is essential (Davis 2006). The multiple and cross cutting social relations produces a matrix of domination taking form,not a simple model of structural subordinate relations (Daly and Stephens, 1995). In order to understand how anybody has come to their current situation, we need to understand the past history/colonization. One cannot assume the same effect or constellation each time, and hence, the investigation of the specific social, political and economic processes involved in each historical instance is important (Davis, 2006). Hancock (2007) defines intersectionality as a body of normative theory and empirical research that proceeds under six key assumptions to be highlighted later. In sum, an

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intersectional approach to analyzing the disempowerment of marginalized women attempts to capture the consequences of the interaction between two or more forms of discrimination. It addresses the manner in which racism, patriarchy, class oppression, and other discriminatory systems create inequalities that structure the relative positions of women, races, ethnicities, classes, and the like. Moreover, intersectionality addresses the way that specific acts and policies operate together to create further disempowerment. For instance, race, ethnicity, gender, or class are often seen as separate spheres of experience which determine social, economic, and political dynamics of oppression ( Crenshaw, 2000). But in fact, they mingle, intersect and fuse. Finally, intersectionality denotes the various ways in which race and gender and other social dimensions, such as economic disadvantage of a woman’s experience, interact to shape the multiple dimensions of a woman’s life. The intersection of these various social dimensions creates layers of inequality that structure the relative positions of women, men, and other groups. For example, gender based inequities intersect with inequities based on alternate forms of “otherness” such as race, ethnicity, religion, or class; thus, forcing many groups of women in the United States and the rest of the world into situations of double and triple marginalization (Crenshaw, 1989, 1995, 2000; Dill, Nettles, and Weber, 2001; Essed; Johnson, Bottorff, Browne, Hilton, and Clarke, 2004; Kirkham, 2003).

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Why Intersectionality? The rationale for using the concept of intersectionality is that contemporary feminist and anti-racist ideologies have not adequately considered the intersectional identities of women of color. In addition, as Dill, Nettles and Weber (2001) point out, the systematic study of intersectionality is "flexible enough to consider large-scale, historically constructed and hierarchical power systems and the politics of personal interactions, including meanings and representations in the experience of individuals and groups” (p. 4). Evelyn Brooks Higginbotham (1992) believes that gender has always had a racial meaning, that it is constructed in and through racialized contexts, and that gender is both constructed and fragmented by race. In addition, economic class is completely embedded in the way that race and gender interact; however, race also exerts a separate and lasting force regardless of economic status. With intersectionality, the primary analytic goal is not to separate the effects of inequities from other determinants of health care or to identify proximate causes of health and health care inequities. Instead it is to explicate the processes through which multiple social inequities of race, gender, and social class are simultaneously generated, maintained, and challenged at the institutional and individual levels. This leads to a shaping of health and the health care services of societies, communities, and individuals, and finally results in the broad systems of inequities becoming targets for intervention (Weber, 2006). Specifically, in terms of policy and practice, government services that target only one category of identity cannot be considered inclusive (Mwarigha, 2003; Hicks, 2003). For example, even through gender or race is important, it is privileged over other axes of oppression. The social, political, and economic determinants of health will not be fully captured, nor will adequate solutions to existing health disparities be found. Hankivsky ( 2007) notes that if researchers and decision makers continue to ignore the complexity of people’s lives, and how the experience of

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multiple locations affect life opportunities and health and access to care, the evidence base that is generated will reify a range of inequities. When intra-group differences are not acknowledged, the remedial framework cannot assess the wide-range of identity-based injuries experienced within one-dimensional, aggregated identities, such as women and Blacks. Those who are privileged by the identity will not be inclined to widen the analysis. Critical to the task of addressing Black women’s health will be the development of new, and the augmenting of existing, ways to discover how multiple identities converge to create and exacerbate health inequities. Intersectionality will not only underline the significance of the intersection of race, ethnicity, caste, and citizenship status of marginalized women, but will also serve to highlight the full diversity of women’s experiences (Crenshaw, 2000). The problems that women of color face are often categorized as either manifestations of the gender subordination of women or the racial subordination of targeted groups. According to Crenshaw (2000) this creates the problem of over exclusion and under exclusion which are discussed below. However, as Wing (1997) acknowledges, although women of color may possess a cluster of identities that lead them to face multiple forms of discrimination, it is also true that the analysis must be more complex. Wing (1997) further notes that, although disproportionately impoverished, there may be some identities that privilege many women of color. These identities are religion, nationality, immigrant status, gender identity, ethnicity, marital status and age. Crenshaw (2000) developed a traffic metaphor and a model of intersectionality that provides a visual representation of intersectionality, depicted in Figure 2.

An Intersectional Accident r de en G

       

R ac is m

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        Social Class

Gender and Race Discrimination | K. Crenshaw

Figure 2. A visual schema of intersectionality, presented by Crenshaw (2002). This figure shows how gender, racism, and social class can intersect in a manner that leads to potentially fatal consequences.

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In this model, race, gender, class, and other forms of discrimination or subordination are the roads that structure the social, economic, or political terrain. These thoroughfares are sometimes framed as distinctive avenues of power. The axes of power - race, ethnicity, gender, or class, constitute the social, economic, and political terrain. It is through these avenues that disempowering dynamics travel. These thoroughfares are generally framed as distinctive and mutually exclusive axes of power. For example, racism is distinct from patriarchy, which is distinct from class oppression. In fact, the systems often overlap and cross each other, creating complex intersections where two, three, or more of these axes may meet. Racialized/marginalized women are often positioned where racism, class, and gender intersect. They are consequently subject to injury by this heavy flow of traffic, traveling along all of these roads. These are the contexts in which intersectional injuries occur – when multiple disadvantages or collisions interact to create a distinct and compound dimension of disempowerment. Therefore, women of color must negotiate the traffic that flows through these intersections to avoid injury and to obtain resources for the normal activities of life (Crenshaw, 2000; Patel, 2001). More recently new models of intersectionality have evolved, critiquing the Crenshaw model which notes that with the traffic metaphor partriarchy, racism and other forms of domination do not collude until they reach the center. Most new models are enmeshed at all times. Additional models of intersectionality include the radial approach (Rummens, 2003); intersecting categories (Carbado and Gulati, 2000-2001); overlapping identities (Rummens, 2003); intersecting identities (Rummens, 2003); multiple intersecting identities (Rummens, 2003); stacking approach (Rummens, 2003); centrigual approach, (Rummens, 2003); multidimensional approach (Rummens, 2003); a matrix (Saunders, 2003). See Hanvisky (2007) for a pictorial of each of these models.

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The Manifestation of Intersectional Bias and Discrimination The problems that women of color face are often categorized as either manifestations of the gender subordination of women or the racial subordination of targeted groups. As a group, Black women are in an unusual position in this society, for not only are Black women at the bottom of the occupational ladder, but their overall social status is lower than that of any other group. Occupying such a position, Black women bear the brunt of sexist, racist, and classist oppression. In this section, the manifestation of intersectional discrimination and/or bias will be highlighted, with a stated application to health care inequities for AfricanAmerican women. Over inclusion and under inclusion. Because racially marginalized women are subject to intersectional subordination, their challenges are not adequately analyzed or addressed by traditional, single identity, concepts of race and gender discrimination. This creates the twin problems of over-inclusion and under-inclusion, and nowhere are these problems more stark than in intra-group differences. The term over-inclusion captures the occasion in which a problem or condition that is particularly or disproportionably visited on a subset of women, is simply claimed as a woman’s problem. It is over-included to the extent that the aspects of the circumstances that render it an intersectional problem are absorbed in the gender framework, without any acknowledgement of the contributions of other forms of discrimination to the situation. The problem with the over-inclusion approach is that the full scope of the difficulties that are simultaneously problems of race and gender subordination escapes

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effective analysis. Consequently, the interventions employed to remedy the problem in question are likely to be anemic. Efforts to remedy a problem must be grounded in an understanding of the full magnitude of the problem, including, where relevant, it’s racialized dimensions (Crenshaw, 2000). In the context of health care, access and quality, reproductive health care is usually seen as a women’s health problem, when in reality, access to highquality care also relates to how reproductive health services are conceptualized and thought about for minority women. The problem of over-inclusion is paralleled by the problem of under-inclusion. A gender analysis may be under-inclusive when a subset of women who are subordinated experience a problem because they are women, but it is not seen as a gendered problem because it does not reflect the experience of women in the dominant groups in society. A more common site of under-inclusion occurs where there are gender distinctions between men and women within racial and ethnic groups. Often it seems that, if a condition or problem is specific to women and unlikely to happen to men, the identification of the problem of racial and ethnic subordination will be compromised (Crenshaw, 2000). An example of this in health care and social services relates to services targeted to single mothers are seen as Black women’s services, but are in reality women’s services. The invisible hand. Intersectional discrimination is particularly difficult to identify in contexts where economic, cultural, or social forces quietly shape the background such that women are placed in positions where they are affected by some other system of subordination. Such background forces are often rendered invisible. They are invisible to everyone in society (except for those who are paying attention) because they are so common, that they appear to constitute a natural and/or unchangeable fact of life. In such contexts, the immediate aspect of the discrimination in question is noticed, but the background structure that places women in these positions remains obscured. To see the issue of discrimination as an intersectional problem, the racial and gendered dimension of the backdrop must be fully in the foreground as factors contributing to the subordinating outcome (Crenshaw, 2000). In health care the invisible hand might relate to the fact that we know that a disproportionate number of African-American women are on Medicaid, but how and why they ended up there is never considered.

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Categorizing the Intersectional Experience There are several different categories of intersectional discrimination. These include: targeted discrimination, compound discrimination, structural discrimination, structural subordination, and political intersectionality. Targeted discrimination. Targeted discrimination is when a woman is intentionally targeted for discrimination, subordination, or violation because of her race or ethnicity (Crenshaw, 2000). The most recognizable example of intersectional oppression is race-based violence against women. Another example might be either sterilization of Black women on welfare without their consent, or testing the effects of contraceptive pills on Puerto-Rican women, prior to their approval Discrimination, violation, or subordination of women of color are sometimes preceded by another manifestation of intersectional oppression; the procreation of explicitly raced and gendered social messages about women of color, that serve to rationalize their subordination, violation, or discrimination. One such message is that African-

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American women are “loose” and enjoy unsolicited sexual advances from random males. This, for instance, may be in the form of the media, but could be also transmitted in much more subtle ways (Crenshaw, 2000). Compound discrimination. Women are sometimes subject to discrimination because of their gender roles and because they are members of racial or ethnic groups. The examples and cases from the legal world may be applicable to inequities in health care by offering a view of how to conceptualize the experience of inequity by women of color, and how to define an institutional, governmental, or other type of intervention (Harris, 1997). For example, women of color may be excluded from typically female jobs in the health care field because of their race. In addition, they may also be excluded from jobs typically reserved for men in the health care field because they are women. Harris (1997), notes that in this society, the law does not know how to characterize the experiences of women of color. Women who are affected by compound discrimination may find that there are very few avenues for challenge. They may file claims on the basis of racial or sexual discrimination, but not both. The Supreme Court’s conclusion that Congress did not intend to allow Black women to make a compound claim (Harris, 1997) arises from its inability to imagine that discrimination against Black women can exist independently from the experience of White women or of Black men. The courts obviously assumed that there is no discrimination suffered by Black women that is distinct from the experiences of other women or Black men. The courts were also concerned that if Black women were granted relief for compound discrimination they would be unduly advantaged. In addition, they were concerned it would invite a host of similar cases coming to the courts. Crenshaw (2000) asserts that “Black women can experience discrimination in any number of ways and the contradiction arises from assumptions that their claims of exclusion must be unidirectional” (p. 6). She notes that providing legal relief only when Black women prove that their claims are based on race or sex is “analogous to calling an ambulance for the victim only after the driver responsible for the injuries is identified.” She argues, “it is not always easy to identify the driver. In these cases the tendency seems to be no driver is held responsible, no treatment is administered and the involved parties simply get back in their cars and zoom (probably creep or wobble) away” (Crenshaw, 1990). Compound discrimination in the health care setting can provide similar challenges. It is important to determine not only how and where to intervene in these situations, but also how to gain consensus and acceptance of this problem. Structural discrimination. Structural intersectional discrimination occurs where policies intersect with underlying structures of inequality to create a compound burden, particularly for vulnerable women. Women may experience specific forms of gender discrimination where they are vulnerable because of their race/ethnicity or class. On the other hand, marginalized women may also be subject to specific forms of racial discrimination simply because of their gendered location within their communities. Thus the racism and bias that they experience may affect them in ways that are different from those experienced by men in their communities (Crenshaw, 2000). For example there may be conflict in the minority community between men and women about their preferences in the use of birth control. The woman may want to control her child-bearing and the male may see several children as a sign of his manhood, or a way to ensure that there is no “genocide” in their communities. Structural subordination. Identifying overlapping effects of background structures that interact with a policy or some other decision that creates burdens disproportionately visited

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upon marginalized women can capture other examples of structural intersectionality. This is different from structural discrimination because the policy in question is not targeted toward women or other minorities; it simply intersects with other structures to create a subordinating effect. For instance, when the state withdraws resources for the care of the young, sick, or elderly, the consequences of these unmet needs may be different for women of color than for White women or men. Therefore, the societal class and racial structure will determine which women will perform the work and which group will have the work performed for them (Crenshaw, 2000). As mentioned above many policies related to welfare, although not specifically targeted to women of color, disproportionately impacts negatively on them. Political intersectionality. Women who are racially and culturally marginalized have actively organized to challenge the conditions of their lives. An obstacle to these sorts of actions are framed in terms of their obligations to their social and national group, an obligation that is sometimes used to suppress any critique of the practices or problems that might in some way draw negative attention to the group, particularly males. Women who attempt to pursue their rights against certain abuses that occur within their communities risk ostracism or other forms of disapproval. This was illustrated by the reactions toward the individuals in the Black community who supported Desiree Washington against the abuse met upon her by Mick Tyson, as well as the case of sexual harassment by the head of the NAACP and a Black female employee. Another aspect of political intersectionality is illustrated by groups of women who resist the idea that racially exclusionary dimensions of some governmental policies are advancing the cause of women (Crenshaw, 1989). Othering. Another manifestation of intersectional subordination is “othering”. Othering is a process that identifies those that are thought to be different from oneself or the mainstream, and then reinforces and reproduces positions of domination and subordination toward these individuals or groups (Johnson, Bottorff, Browne et al., 2004). The concept of “othering” has been developed and applied to feminist theory and dates back to the 1960’s with de Beauvoir’s work on the nature of men and women. Griffin (1981) expanded the idea of “othering” in her discussion of how dominant members of society project negative aspects of themselves on others. Contemporary scholars have used the notion of “othering” to examine the issues of racism, identity, and difference (Ahmad, 1993; Fine, 1994; Hall, 1991; Weiss; 1999). In studies on “othering” in heath care, Kirkham, (1998; 2002) notes that “othering” practices included: essentializing explanations, culturalist explanations, and racializing explanations. Women survived these experiences of “othering” utilizing a number of approaches including: distancing themselves from other minority women; trying to fit into the Eurocentric ideal: evoking their rights to equitable health care: and encouraging women to learn about those rights. Sheryl Reimer Kirkham (2003) uses the phases, “The politics of belonging” as the opposite of being “othered”. Belonging is one of the recurrent themes in her ethnography examining the social context of intergroup health care relations. Certain people, both patients and health care providers, were constructed as “belonging” in the social fabric of health care, whereas some were “left out” in the margins and constructed as “other”. The article also addresses the multi-layered analysis of “othering” in the health care context, relating to health care policy and practices within and for the organization. This is analyzed from a social, political, historic, and economic perspective.

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Specific Theories within the Rubric of Intersectionality As we are interested in targeting the needs of African-American women, there are intersectional theories that have been developed that specifically address experiences of intersectional subordination among African-American women and other women of color. Of particular interest are two of these theories: critical race feminism and womanism.

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Critical Race Feminism – The Origins Before discussing the concept of critical race feminism it is important to place it in the context of Critical Legal Studies (CLS), and Critical Race Theory. According to Adrien Katherine Wing (1997), critical race feminism “is part of an evolving tradition that originated with Critical Legal Studies (CLS), a movement of predominately White male legal academics that sprang up in the 1970’s” (p2.). The premises embraced by CLS include post-modern criticism of individualism and hierarchy in modern Western theory. “A primary method of analysis for critical scholars is deconstruction, which entails analyzing supposedly neutral concepts to show the true nature of the contingent power relationships they mask and conceal” (p2). People of color, White women, and others were attracted by CLS because it challenged orthodox ideas about the inviolability and objectivity of laws that had oppressed minorities and White women for centuries (Delgado, 2002; Wing, 1997). Critical Race Theory. Despite the progressiveness of CLS, there were scholars who felt that, though well meaning, CLS often excluded the perspectives of people of color and White women. It was felt that the critical legal theorists were not able to expand their analysis beyond the worldview of White male elites. Therefore, scholars of color began the Critical Race Theory (CRT) genre in the mid-1980’s (Barnes, 1990; Delgado, 1995; Weselman, 1999), though the intellectual underpinning of the movement can be found in the work of Derrick Bell and others in the mid 1970’s (Wing, 1997). It is also important to note that related theories include Latino Critical Theory (LATCrit), Asian, and tribal critical theory (Delgado, 2002). Critical Race Theory emerged as a self-contained entity in 1989, and the first group of CRT scholars organized shortly afterward. The genre developed because its scholars believed that the civil rights movement had stalled and the old approaches of amicus briefs, marches, and litigation were yielding smaller returns when confronting manifestations of de facto discrimination. Additionally, while some CRT adherents seemed ready to disregard or deconstruct individual rights-based notions, some CRTs called for an expansion of rights discourse to overcome its current limitations. It challenged the ability of conventional, legal social strategies to deliver economic and social justice (Wing, 1997). Critical Race Theorists have examined contemporary legal thought and doctrine from the viewpoint of the law’s role in the construction and maintenance of social domination and subordination. In the process they challenge the basic assumptions and presuppositions of the prevailing paradigms among mainstream liberals, conservatives, and even radicals in the legal academy (Crenshaw, 1995b). Critical race theory also works to name and discuss the daily realities of racism and how racism continues to privilege Whites and disadvantages people of color (Ladson-Billings, 2000).

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One of the several organizing principles of CRT is that racism is an ordinary and fundamental part of American society, not an aberration that can be easily remedied (Barnes, 1990; Delgado, 1995; Wing, 1997). While some critical race theorists believe that racism’s worst effects can be eliminated or substantially alleviated over time, others believe in the permanence of racism. Therefore, they believe that formal equal opportunity laws may only be able to remedy the most egregious sorts of injustice, those that stand out from the ordinary racism that permeates society. A second cornerstone of the theory is the belief that a culture constructs its own social reality in its own self-interest. Therefore, CRT holds that White elites will tolerate or encourage racial progress for minorities only if doing so promotes White self-interest. Consequently, civil rights laws are a mechanism to permit racial progress at a pace acceptable to broader society. Finally, CRT is skeptical of dominant legal (and other) theories supporting hierarchy, neutrality, objectivity, meritocracy, ahistoricism, and single axis analysis, and draws more from such intellectual traditions as law and society, liberalism, feminism, Marxism, postmodernism, pragmatism, and cultural nationalism (Barnes, 1990; Calmore, 1997; Smith- Maddox and Solorzano, 2002; Wing, 1997). Critical Race Theory also legitimates and promotes the voices of people of color by using story-telling to integrate experiential knowledge, drawn from shared history as the “other”, into critiques of dominant social orders (Solorzano and Yasso, 2002). Also for more details read: Dorothy A. Brown, Critical Race Theory, Cases, Materials and Problem, 2003. Critical race theorists highlight that identity-based analysis of race and class as intersecting ideas and identities underlie theorizes about the relationship between race and class, racism and material exploitation. They note the centrality of class and economics to racial subordination (Whyte, 2005).

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Critical Race Feminism – A Critique of Traditional Feminist and Anti-Racist Ideology Just as scholars of color felt excluded by well-meaning CLS adherents, women of color have felt somewhat excluded from their well-meaning CRT peers. Too often the perspectives presented assumed that the experiences of women of color were similar to those of their male counterparts. Additionally, these women observed that the various strands of traditional feminist jurisprudence, which had evolved during the same time period as CLS, were based on the experience of White, middle and upper class women. If mentioned at all, the differing experiences of women of color were often relegated to footnotes. While mainstream feminisms assert that society is patriarchal, it does not discuss “race” patriarchy. It overlooks the fact that this domination affects men and women of color differently, and that women of color and White women are affected differently by their domination (Journal of Intergroup Relations, 1999; Martin and Sullivan, 2000; Wing, 1997; Wing, 2002). Therefore, critical race feminism utilizes the concept of intersectionality, meshed within the strands of critical race theory, in the development of the theory. Celia Romany (1997), a critical race feminist, critiques feminist legal theory, legal liberalism, and post modern theory for their essentialist failure to take into account the experiences of minority women. Romany claims: 1) feminism has a monoclusal focus on gender and falls short of its goal, which should be liberation of all women; 2) feminism, as so defined, cannot adequately address the shortcomings of liberal legalism; and 3) post modernism, although helpful in counteracting feminist essentialism by giving space and voice

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to a multiplicity of accounts, nevertheless lacks a material analysis of macrostructures of inequality for women of color and thus lacks translation potential for social change. Angela P. Harris (1997) criticizes Catherine Mackinnon and other feminist theorists for using White women as the epitome for all women. She notes that this fragments Black women’s selves beyond recognition, often relegating them to footnotes. Harris (1997) notes that essentialism is intellectually convenient and, to some extent, cognitively engrained, however, essentialism also carries with it important emotional and political payoffs. Essentialism often appears as the only alternative to chaos, mindless pluralism, and the end of the feminist movement. Harris (1997) declares, “as long as feminists, like theorists in the dominant culture, continue to search for racial essences, Black women will never be more than at a crossroads between two kinds of domination, or at the bottom of a hierarchy of oppression, and will always be required to choose pieces of themselves to present as wholeness” (p. 11-12 in Wing 1997). At a conference on the future of critical race feminism and intersectionality speakers noted that intersectionality might profit from a shift in focus from a study of Black women as an atomized subset to a focus on Black families as a social/economic unit. They noted that they should expand their focus from just race and gender alone, but to how race, gender and class interact for women of color and their families within a system of White patriarchy and racial oppression. They noted that they should also focus on discrimination by oppressive institutions within gender groups (within one race) based on preferences given to those who best fit the White norm. There was also discussion of the role of critical race feminism in regard to global problems (Wiggins, 2001). Characteristics of Critical Race Feminism. Essentially, a CRF perspective notes that women of color are not simply White women with some ineffable and secondary characteristic, such as skin tone. In her early writing, Kimberlie Crenshaw (1989) noted that women of color are marginalized by traditional legal, antiracist, and feminist analysis. She argued that coupling theory with strategies to include the multiply discriminated against will ultimately benefit and transform society. Mari Matsuda (Matsuda, 1996), another critical race feminist, called for identifying the multi-leveled identities and multiple consciousness of women of color. CRF tends to be multidisciplinary in its focus. It is concerned with both theory and practice, and therefore possesses a jurisprudence of resistance (Matsuda, 1996; Wing, 1997). Adrien Wing (1997) asserts that the discrimination women face should be analyzed in terms of its multiplicative rather than additive nature. She is also interested in how the professions can create multiplicative praxis to assist women of color in improving their lives. Praxis is important. As Guinier (2002) notes, the debate about race has been raging in academic circles and is too often disconnected from the material reality of being raced. A similar argument can be made about the problem addressing the delivery of equitable health care services to people of color, and women in particular. It has been far more theoretical than placed in reality. Furthermore critical race feminism is anti-essentialist. Accordingly, the idea that there is one authentic or minority voice is incorrect. CRFs believe that much of feminist legal theory presumes that White middle class women’s experiences can speak for all women. By the same token, much jurisprudence on race has unconsciously presumed that the Black male experience holds for all Blacks and minorities. CRF calls for a deeper understanding of the lives of women, understanding the multiple natures of their identities. CRF scholars emphasize theoretical and practical considerations of the intersection of race, class, and

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gender by placing these factors at the center of analysis (Wing, 1997). Critical race feminism tends to be multidisciplinary in its focus. It is concerned with both theory and practice, and therefore possesses a jurisprudence of resistance (Matsuda, 1996; Wing, 1997). It is concerned with ways of addressing how ongoing oppressions, social and economic crisis, and universal political forms can be resisted (Kent State Law School, 2005).

Womanism

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Another intersectional theory that specifically addresses the experiences of AfricanAmerican women is womanism. This framework was developed by Alice Walker (1983) as a protest or an alternative to the use of the term feminist for Black women. The term womanist reflects the view that the experiences of African-American women are unique and significantly divergent from those of White women. Walker’s (1983) theory is femalecentered and points beyond the women themselves to conditions, events, meanings and values that have crystallized in the African-American community around women’s activities and formed traditions (Williams, 1989).” A womanist is a self-namer and definer; familycentered; in concert with males in the struggle of minorities; spiritual; respectful of elders; adaptable; ambitious; mothering; and nurturing. These are a few of the essential features to the interpretation of women of African descent. Although a person who is Afrocentric does not have to be a womanist, a womanist is, by nature, Afrocentric. Afro-centric characteristics include: harmony with the group; inclusivity and synthesis; cooperation and collective responsibility; spiritualism; cooperativeness; and independence (Hudson-Weems, 1993). Womanism, as a theoretical framework, helps us to advance the understanding of African-American women’s lives. The absence and invisibility of African-American women in research and policy analysis prompted Black feminist scholars to develop theoretical discourses that considered the complexities of African-American women’s lives. The basis for theory development is the everyday lives of African-American women. Black feminist scholars developed theory that was situated in the African-American experience and linked such experiences to larger structural constraints. A Black feminist perspective values and centers African-American women’s experiences and empowers African-American women to interpret their reality and define their objectives (Taylor, 1998).

Black Feminist Thought Capturing the concept of intersectionality, is Black Feminist Thought (Hill-Collins, 1990), which takes into consideration how concepts and organizing principles such as race, class, and gender intersect and blend to produce material consequences for African-American women. King (1988) asserts that the social construction of class, race, and gender constitutes three interdependent control systems that are interactive and produce a unique, multiple jeopardy situation for African-American women. One defining difference in this theory, is that the simultaneous influence of race, class, and gender are not constant, but change according to life events. Thus, the significance of these three elements greatly depends on the context because, at any given time, social conditions shape what factor is most important.

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This is an important point in relation to intersectionality. Because variables are interactive and multiplicative, they each have equal power and, although they are all always present in women’s lives, their importance or power (negative or positive) may depend on the context or circumstance. It can be difficult to distinguish between critical race feminism, womanism, and Black feminist thought because each of these theories provides an intersectional analysis. However, the differences emerge with the population groups that the theories target, and the values driving the theory.

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A Framework: The Sojourner Syndrome Mulling (2001) references the Sojourner Syndrome, yet another theory that can be utilized to conceptualize the lives of some Black women. The Sojourner Syndrome expresses the combined effects and joint influence of race, class, and gender in structuring risk for African women. The Sojourner Syndrome represents a behavioral strategy that has important health consequences. It represents a gendered form of John Henryism. John Henryism describes a strong behavioral predisposition to cope actively with the psychosocial environment stressors, but coping has negative effects on health. In the case of John Henry, he reigned victorious and then died moments later. The message of intersecting and overlapping notions of responsibility is found in the symbol of Sojourner Truth. In a speech that she gave in 1842 she talked about her responsibilities, which mirror the lives of the women in Central Harlem and other places: the assumption of household, economic responsibilities, including working outside the home and community involvement and advocacy. She also spoke about the lack of covering and protection for her, including the lack of protections of private patriarchy which are offered to White women based on concepts of womanhood, motherhood, and femininity. She further shared the experience of being silenced and the loss of children. Exploration of the consequences of these intersecting responsibilities/experiences that exist for AfricanAmerican women across class may give us insight into the way that class, race, and gender structure constrain choices and therefore increase risk for Black women (Mullings, 2005; Truth, 1851). The Sojourner Syndrome expresses the combined efforts and joint influence of race, class, and gender in structuring risk for African-American women. For Black women, elevated health risk is also observed among college educated women, because of their exposure to racism and sexism. This framework may help to clarify the mechanism by which race mediates class and gender status. First the consequences of race and gender – of being a Black woman – contribute to the instability of class status, which explains why there was so much vulnerability for middle class women. Furthermore, race dilutes the protection of class. For example, middle class women may have attained the achievements necessary for middle class status, but they still suffer race and gender discrimination at work. They are less likely to marry and more likely to be single heads of households, because they are subject to the shortage of marriageable Black men. Some middle-class women move to the inner city to avoid racism, but are then subject to all the lack of resources and services that go hand and hand with these communities. All the above factors become potential sources of stress (Mullings, 2005; Mullings and Wali A, 2001).

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Part VI. Intersectionality and Research Utilization of intersectional research opens up new intellectual space for knowledge and research production (Weber and Fore, 2003). It can lead to both theoretical and methodological innovation (Simien, 2007). Because of this reality, within the social sciences, the notion of intersectionality has attracted substantial attention in the last decade and has gained prominence due to the works of many feminists and other critical thinkers (Davis, 1981); Collins, 2000; Crenshaw, 1992; King, 1996). Generally, these works stress the idea of race/ethnicity, class, and gender (in addition to other social locations). They note that these social locations are not separated and additive, but rather interactive and multiplicative. Although the concept has gained currency over the last ten years, some still claim that little theory has been produced on the idea and that the literature on intersectionality remains descriptive (Chafetz, 1997). While the charge of a dearth of theory may be questionable, it is certainly true that more empirical work on intersectionality and the concomitant differential, social, economic, and political outcomes is required in the social sciences. Many have questioned how to design research to deploy comparisons across and within race/ethnicity, gender, and class. During conference proceedings on “The Future of Intersectionality and Critical Race Feminism” held on October 6, 2000, it was noted that, although the scholarly output from intersectionality theorists and critical race feminists has been enhanced by empirical research, most would agree that even more attention should be paid to data collection, processing, and analysis. Questions that emerged during the conference included the following. What are scholars doing in the area? What continuing promise does this work hold for scholarship advocacy and legal reform? What problems arise when attempting to use standard empirical models for women of color? How are these problems being addressed in the literature? How can empirical research be used or misused? How can new technologies be used to aid in data collection, processing, and analysis? Most recently, there have been calls by scholars, organizations, policy makers and advocates to engage in research that places multiple axes of difference as central to any investigation of health inequities (Hankivsky, 2007, Reid, Pederson and Dupree, 2007, Jackson et.al, 2005, Spitzer, 2004, Green, 2002). In Canada, examples of intersectionality being adopted explicitly as a theoretical concept and a tool for research and policy have recently began to emerge ( e.g. Benoit and Shaver, 2006; Benoit et al, 2007; Brotman, Ryan and Meyer, 2006; Browne, 2007; Browne, Syme and Varcoe, 2005, clark, Hunt and Mark, 2006; Salmon, 2007, Varcoe and Dick, 2008). A central challenge is that, “intersectionality research requires more than simply performing separate analyses by race and gender and using traditional theories to interpret the results (Simien, 2007). Lorber explains: multiple categories disturb the neat polarity of familiar opposites that assume one dominant and one subordinate group, one normal and deviant identity, one hegemonic status and one “other”. Wilkerson notes that researchers are challenged in the way they conduct studies by examining several identity markers or systems of domination. Rarely do they have the time to consider the effects of the intersection of these identity markers. Bishwakarma (2007) argues that one of the most salient challenges for intersectional researchers is how to manage the complexity of the intersectional analysis. Instead the goal is to isolate the “unique” effect of one variable on a particular social phenomenom. Thus the objective in all steps of intersectional research is to probe beneath the single identity to discover other identities that may be present and contributing to a situation

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of disadvantage (Center for Women’s Global Leadership, 2008). In addition, other markers that relate to health access, quality and status, such as language, disability, age, religion, immigration, and region should be attempted. Research frames that specifically address health status and health care inequities include the social determinants approach (see works by Kreiger, Williams, Marmot; Link and Plelan, Rapheal and the World Health Organization), community-based participatory research (CBPR) (Isreal, 2008), and indigeneous methodologies (Porsanger, 2004, and Louis, 2007). In most instances the social determinants frame does not place explicit emphasis on power, the interaction of determinants, and the oppressive effects of these relationships (Hankivsky and Cristofferson, 2008). In the case of CBPR, while these approaches are different, what is common among them is that ‘each is explicitly committed to conducting research that will benefit the participants either through direct intervention or by using the results to inform action for change (Isreal et. al, 1998). In regard to indigenous research intersectionality is being embraced by those conducting research with indigenous populations as a complementary approach. Given these perspectives on intersectional research, the specific three questions discussed in this section include: 1) what is lacking with traditional research methodologies for conducting research on African-American women? 2) What are the origins of intersectional scholarship, and why is it appropriate to use this approach to study African-American women? 3) What is (are) the general framework(s) used for intersectional research? Answering these questions will provide a framework for understanding the specific research methodologies that facilitate appropriate study of African-American women.

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Questions 1: What is Lacking with Traditional Research Methodologies? Currently, researchers are not devoting enough inquiry specifically to the experiences of women who are marginalized. This fact is exacerbated by the reality of research methodologies, particularly in the quantitative arena, and by the lack of standard assessment tools able to uncover experiences that reflect either the multiple identities of marginalized women or the range of unique burdens they often experience. As a result, specific or alternative research methodologies and protocols must be fashioned to develop an adequate information base from which to analyze the specific consequences of race, gender, and other intersected identities (Carter, Sellers, and Squires, 2002). There is also a lack of advanced analysis on the impact of the intersection of gender and class for women of color. Research processes do not often permit the simultaneous disclosures of race, gender, and class identities among women of color. In addition, research findings are not routinely disseminated to study participants, to the general public, or to the research community, unless the findings reinforce negative stereotypes about AfricanAmerican women. Thus, little is known (especially in the public sector) about what intersectional knowledge entails and how it came about (Carter, Sellers, and Squires, 2002). Hancock (2007) notes that intersectionality can help us to better conceive research designs and data collection through its attention to causal complexity, which has enormous ramifications for public policy. She notes that it offers two ways of thinking about causal complexity. First, it requires attentiveness to aspects of a problem such as health disparities that cannot be assumed to be mutually independent. It also requires us to not only look at the

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problem from the lens of its impact on Black women because of their race and gender, but also to determine the multiple pathways that cause inequities, at the institutional and individual levels, that may impact on different groups of Black women. It would acknowledge that where Black women sit is a product of the dynamic interactions between individuals and institutions, and that interventions must be implemented at both levels. Hancock (2007) ends by asserting intersectionality is a body of research not a content specialization.

Question 2: What are the Origins of Intersectional Scholarship?

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Now that we have considered what is lacking we are ready to understand the impetus for the development of intersectional research methodologies. Feminist intersectional research arose primarily among women inside and outside of the academy – not from the centers of power where women’s voices are barely represented. Because intersectional research never benefited from the vast resources that characterize these settings, it is not constrained by the traditional approaches to knowledge sanctioned in these venues. Instead, it emerged in a space where theorists were relatively free to construct theory and knowledge that grew directly from the lived experiences of women of color (Weber, 2006). The origins of intersectional research grew out of a critique of mainstream scholarship and scholarly institutions, and the exclusionary practices of interdisciplinary and critical movements, including women’s studies and ethnic studies. Because feminist scholarship was interdisciplinary from its inception, it had to develop strategies and skills for revealing the ways that disciplinary assumptions and research methodologies shape knowledge for translating meanings across disciplines. In addition, intersectional research arose primarily to aid in the understanding of the multiple dimensions of social inequality (class, race, ethnicity, nationality, sexuality, and gender) that are manifested at both the macro-level of institutions and the micro-level of the independent experiences of women who live at the intersection of multiple identities (Zinn, Cannon, Higginbotham, and Dill, 1986). Other scholars such as Jewel Prestige, Mae King, Linda Williams and Shelby Lewis have played a critical role in bringing to the academy the intersecting patterns of discrimination, as they unveiled a portrait of marginality and provided a theoretical framework which intersectionality research is based today (Simien, 2007).

Question 3: What is the General Framework Used for Intersectional Research? Hancock (2007) notes that intersectionality can be envisioned as a paradigm with a coherent set of empirical research standards, which underlies, informs, and guides the investigation of a research question. According to Hancock (2007) an intersectional research approach utilizes more than one analytic category. Categories matter equally and the relationship between the categories is an open empirical question. Furthermore, the categories are categorized as a dynamic interaction between individual and institutional factors. The makeup of each category is diverse; members often differ in significant ways and the level of analysis usually entails the individual integrated with the institutional factors. The

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methodological conventions are empirical, theoretical, multiple method, and sufficient. Intersectionality explicitly embraces interdisciplinarity. It makes more clear the strengths and limitations of qualitative and quantitative methods, and this approach prioritizes the use of a mix of methods to realize the demands of a multidimensional research analysis (Hankivsky et al, 2007; Weber and Fore, 2007). The Analytic Frame. There is more than one analytic frame for intersectionality, however, intersectional scholarship usually takes on the social justice frame, and takes a research stance of engaged subjectivity and reflectivity – critically reflecting throughout the research process on the impact of the social location of the researcher and the researched (Weber, 2005). In qualitative studies the reflectivity may not be part of the research process. The focus on intersectional scholarship is on identifying the meanings of multiple inequities in women’s lives and in the institutions, and seeking social justice for those situated in multiple subordinated locations. Intersectional scholars have looked at ways of facilitating libratory dialogue across race, gender, and sexual divides. Emerging from the broad social systems and social groups, intersectional approaches focus on the process through which group hierarchies are created, sustained, challenged, and transformed over time in specific locales (Weber, 2006). Inequities are conceived as social constructions situated in social contexts and structures beyond the individual. The primary analytic goal is not to separate the effects of inequities from other determinants of health and health care or to identify proximate causes of health inequities. Instead, it is to explicate the processes through which multiple social inequities of race, gender, and social class are simultaneously generated, maintained, and challenged at the institutional and individual levels (Weber, 2006). Intersectional subordination is, by its very nature, often obscured because it tends to happen to those who are marginalized (even within subordinated groups) and because the existing paradigms for assessing discriminatory behavior do not consistently anticipate this form of discrimination. Additionally, the often complex realities of intersectional subordination create yet another dimension of intersectional vulnerability. Recognizing and accommodating this problem requires that intersectional research protocols place primary focus on contextual analysis. Attention to intersectional discrimination calls for an analytic strategy that values a bottom-up analysis. For example, by beginning with questions about how women live their lives, the analysis can build upward, accounting for the various influences that shape Black women’s lives and make them into marginalized beings. It is particularly important to uncover how policies and practices may have a different affect on the lives of African-American women than they do on other groups who are exposed to similar obstacles (Weber, 2006).

Theory Intersecting Method: Research Methodologies for Understanding the Experiences and Circumstance of African-American Women Although the predominate thinking in research on women, particularly intersectional research, is the use of qualitative methods, there are varied ways in which research can be conducted including qualitative, quantitative, and mixed method. Research methods can be chosen based on a particular theory (i.e. womanism, critical race feminism) to answer questions about the lives and circumstances of women of color. Incorporating the concept of

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intersectionality influences how research is conducted – specifically in regard to what theories and methodologies are used in the research. The results of the research, which emanate from utilizing specific theories, conceptual frames, and methodologies, can influences the policy solutions and frameworks that are utilized by key stakeholders to address health care inequities for African-American women.

Race/Gender-Based Research Methodologies There are concepts and theories that relate to African-American women and can be utilized to aid in planning how to conduct intersectional research on health care inequities for women of color. These include: critical race feminism and womanism, which were described above. In addition, there are several research methodologies that facilitate the use of an intersectional analysis. There are some that are specifically related to race and gender, including participatory witnessing, which flows from womanist theory, methods based on Black feminist political thought, as well as critical race methodology. In addition, there are other critical methods that also facilitate intersectional analysis such as critical ethnography and focus groups. The latter methods, although traditionally qualitative, can be used in a manner that is, in many ways, congruent to capturing the essence of Black women’s experiences.

Womanist-Based Research and Methodologies

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Womanist theory uses an Afro-centric approach and thus moves our perception of the research process in a new direction. Taylor (1998) has advocated for a womanist perspective in nursing care research. The rationale is quite similar to the utilization of a Critical Race Feminism approach, but focuses exclusively on African-American women. Taylor (1998) noted, “most research in nursing have ignored or minimized the underlying influences of race in shaping reality and the interpretations of reality for African-American women and women of color in health care. However, in order to capture the complexities of the social worlds we seek to understand, we must engage in different analytic angles on our data and be familiar with a diversity of interpretive approaches” (p54.). The focus in womanist-based research stresses the importance of the lived experience.

Participatory Witnessing Participatory witnessing is a specific research methodology that emanates from womanist theory. Black feminist and womanist theories use an Afrocentric perspective and thus move the perception of the research process in new directions. Participant observation “provides direct experimental and observational access to the insider’s ‘world of meaning”, and thus is useful in further development of the research questions and theories that are relevant to African-American women” (Jorgensen, 1989 p.15). However, the term “participant observation/observer” implies a split between subject and object. Thus, the “utilization of others for one’s purpose (which may or may not coincide with their own needs), and the

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possibility of exploitation, are built into almost all research projects with living human beings (Patel, 1991). It is this lack of connectedness and potential for exploitation that, for example, led Bell hooks (1984) to write in Feminist theory from margin to center:

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Often the White women who are busy publishing papers and books… make us the ‘objects’ of their privileged discourse on race. As ‘objects’ we remain unequal, inferior. Even though they may be sincerely concerned… their methodologies suggests that they are not yet free of the type of paternalism endemic in White supremacist ideology (p12.).

hooks’ statement expresses a concern for how researchers and theorists locate themselves relative to their participants and theories. A shift from distant authoritative perspectives forces us to consider how we approach and interpret African-American women’s stories. It is not enough to just collect narrative data; rather, we must attempt to locate ourselves and perform research in ways that affirm AfricanAmerican women. The process of “participatory witnessing” is more accurate than our roles as researchers, particularly when engaged in research on African-American women (Taylor, 1998 p.59). Gordon (1995) describes a witness as “less an observer than a teller – that is, one who translates what she sees and hears for an audience”. In participatory witnessing, the distance between the ethnographer and the informant fades as the researcher begins to listen in a way that encourages “self-representation” and accurate “other-representation” (Taylor, 1998). Participatory witnessing is an act of bearing witness. Smitherman (1994) writes that to bear witness is to “attest to an experience, fact, or event. The term “bearing witness” is often, but not necessarily, used in reference to a religious experience. Acts of witnessing and testimony are part of the African-American experience, reaching back to slavery to places our ancestors created…where they opened themselves up to one another, showed their scars, spoke of their day to day life - their hopes and dreams, prayed to their God, and tried to remember everything they had lost (Tarpley, 1995). Testimony also means: to bring forth, to claim and proclaim oneself as an intrinsic part of the world. African-American women may think of interviews/focus groups as acts of testimony. Perhaps the researcher should think of the interviews as an act of testimony of the informant (Taylor, 1998). Testifying has also performed the important secular function of providing means by which the slave could become visible in a society in which she had been rendered invisible; by which she could explore the sound of her own voice when she had been rendered silent (Tarpley, 1995). To testify is often an expressive act of resistance against larger social forces of oppression. It is a way to assert one’s agency and to reclaim one’s humanity. As a researcher, to bear witness is more than to provide written documentation of the experience of others. Bearing witness involves an active engagement of the self in order to create a space in which to share in the experience of others. In this mutual space of co-presencing, we affirm and validate the experience as real. As a result researchers are connected with themselves and with each other by bearing witness (Taylor, 1998). To be a participant witness includes describing, translating, analyzing, and commenting upon what the participant shares. The researcher who bears witness must be responsible and accountable for progressive critical reflection and interpretation of the stories. The end point

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of participatory witnessing is to translate the stories in a fashion that is beneficial to AfricanAmerican women and improves their social and material conditions (Taylor, 1998).

Black Women’s Political Thought and Research Methodologies Black women’s political thought (Hill-Collins, 1990) has suggested specific ways to gain knowledge about Black women’s lives. It is suggested that the researcher has to “pivot the center” and “learn to center in another perspective”, validate the experience of Black women, and judge this experience by its own standards, without need of comparison or need to adopt the framework as their own. Pivoting the center means to challenge the Eurocentric idea of White middle class as the normative experience and legitimate perspective of the world.” Brown (2001) points out that, in order to shift the experience of the other to the center of the exploratory process, “one has no need to “de-center” anyone in order to center someone else. One just needs to pivot the center. While moving or pivoting the center does not eliminate a comparative margin, it will enhance one’s ability to recognize hallmark features or key characteristics or core themes within African-American women’s experiences. Collins (1990) is among one of the first Black feminists to outline an epistemology rather than a Eurocentric masculine/feminist framework. “Rather than presenting the problem of one of economic stratification supporting male dominance and female dependence, the concern should focus on the effort of economic, political and social domination” (p 25.). Collins (1993) reminds us that valuable knowledge is located within those that live the experience. At the core of Black feminist thought are theories created from the standpoint of African-American women – in essence, an interpretation of Black women’s experience and ideas by those who participate in them. hooks (1984) also supports “lay knowledge” and “everyday theorizing” by African-American women.

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Critical Methodologies The next group of methodologies is coined “critical” methodologies. Critical methodologies normally utilize tools that facilitate eliciting data which will aid in a social/structural analysis of an event, situation, or problem. The purpose and intent of these methods is to ask questions, teach, and inform about the factors in environments which tend to oppress individuals. These particular tools are critical race methodology (emanating from critical race theory) and critical ethnography. At the core of a genuinely critical methodology lies the application of dialectical logic.

Critical Race Methodology Critical Race Methodology, based on critical race theory, is a tool that exposes deficitinformed research (stories) that distorts epistemologies of people of color. According to Solorazano and Yasso (2002), a critical race theorist, challenges the intercentricity of racism with other forms of subordination and exposes deficit-informed research that silences and distorts epistemologies of people of color. He notes that, although social scientists tell stories

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under the guise of "objective" research, these stories actually uphold deficit, racialized notions about people of color. The ideology of racism creates, maintains, and justifies the use of a “master narrative” in storytelling (Montecinos, 1995). It is within the context of racism that the behaviors of Black patients are understood and described. White privilege helps to maintain these majoritarian stories, which generate from a legacy of racial privilege. They are stories in which racial privilege seems natural, and these stories carry layers of assumptions that persons in racialized privilege bring to their discussion of racism and other forms of subordination. Majoritarian stories are often not questioned because people do not see them as stories, but as parts of everyday life. Therefore, as part of this analysis, it is important for the master narrative to be exposed and for counter stories, by people of color and their allies, to be told in the hospital setting. Critical Race Methodology as a tool. The concept of “storytelling” is a dominant tool of critical race theory (CRT). CRT critiques dominant beliefs or social constructions of the problem versus the “truths” as unmasked by critical race theorists. For scholars like Solorzano and Yasso (2002), a critical race methodology provides a tool to "counter" deficit storytelling. Specifically, a critical race methodology offers space to conduct and present research grounded in the experiences and knowledge of people of color. As they describe how they compose counter-stories, the authors discuss how the stories can be used as theoretical, methodological, and pedagogical tools to challenge racism and classism, and work toward social justice, including addressing inequities in health care (Browne, 2001; Delgado, 1989; Lourdes- Rollins, 1990; Solorzano and Yasso, 2002). As there is also a strong link between critical race theory and critical race feminism, the method of story-telling is again a central tool. The difference is in the emphasis on the engendering of race; therefore, countering the societal race and gender stories of African-American women. There has been some work on this particularly by Adrien Wing and colleagues (see generally Critical Race Feminism edited by Adrien Wing, 1997). As mentioned above, the counter-story must be told in order to challenge the dominant story. Opponents of critical race methodology have attacked the approach as non-legal, lacking intellectual rigor, overly emotional, and subjective. Nevertheless, this methodology has significant value. Many African-Americans prize their heritage in which the oral tradition has had historical importance - where vital notions of justice and the law, and their experiences which do not jive with these notions, are communicated generation to generation through the telling of stories. Using stories enables individuals to connect to those who do not understand hyper-technical, legal or social policy language, as well as facilitating the telling of Black truths, which is usually counterfactual to the dominant truth. In the context of health care it is essential that we understand how the “story” of inequities in health care treatment is “told” by differing people and how that impacts on how inequities are addressed in the hospital setting. A study at the University of Maryland-Baltimore found that non-Blacks’ beliefs about health inequities in the Black community have a profound impact on framing contemporary epidemiology, health policy development, and public health research questions (Williams and Johnson, 2002). The researchers asserted that most contemporary, middle class, White citizens believe that race is a biological construct and that health status is negotiated by self-determination, choice, and individual responsibility. These types of assumptions can falsely substantiate and

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justify health disparities and inequities in care, while intensifying racist medical practices and erroneous assumptions about Black’s health (Williams and Johnson, 2002). Another “story” relates to the reality of inequities in health care and the differences based on who is telling the story. As noted earlier, a national survey of physicians found that, of the White physicians interviewed, 77% believed that inequities in how people are treated within the health care system “rarely’ or ‘never” happen based on factors such as income, fluency in English, educational status, or racial and ethnic background. In the same survey, 8 out of 10 Black physicians reported that the health care system at least ‘somewhat often’ treats people unfairly based on various characteristics, with differences particularly striking in regard to race and ethnicity (Kaiser Family Foundation, 2001). The good news emerging from more recent studies is that a higher percentage of physicians believe that inequities in health care exist. Unfortunately, this depends on who is telling the story, what physicians see as the causes of disparities, and who the physicians believe is causing the disparate treatment. Although most believed there were disparities, they felt they were caused by patient or systems factors, and if physicians were providing disparate treatment it was usually not in their hospital and/or practice (Lurie, Fremont, Jain, and SL, 2005).

APPLICATIONS OF THE USE OF STORY-TELLING IN HEALTH CARE INEQUITIES POLICY

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Understanding the Consequences of Discrimination in the Health Care System for African- American Women With the use of the narrative, critical race feminism can be applied to inequities in health care for African-American women. Their voices provide a powerful basis for a social justice critique of the health care structure and socio-cultural character of the health care environment. The goal is to ground these narratives as a basis for a critique illustrating the consequences of a health care system that does not value Black women. By looking at discrimination in health care for women of color, it is possible to see the negative consequences for these women, for the health care system, and for society as a whole. Two examples are provided about the role of story-telling to address inequities in health care and related sectors. These stories are in reference to the role of federal bureaucratic structures, including the Office of Civil Rights, in facilitating inequities in health care across the country, by not holding states or other federal offices accountable for addressing discrimination in the health care system. The second example presented describes the role of story-telling as a mechanism to train health care providers about the lives of African-American women, and as a tool for offering preventive health education on breast cancer for women of color.

Example 1: The Role of Bureaucratic Structures in Facilitating Health Care Inequities A government report entitled, The health care challenge: Acknowledging disparity, confronting discrimination and ensuring equality (US Commission on Civil Rights, 1998)

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utilized story-telling as a way to gather data. The authors interviewed key officials in civil rights enforcement and from the legal community. The report made extensive use of direct quotations from individuals speaking in the first person, as well as specific anecdotes from published documents and government memoranda. The data showed how bureaucratic structures and decision-makers were impeding the process of the application of civil rights laws to discrimination in health care. Often a section in the text is preceded by one of these quotations. This method mimics the legal system’s tool of taking testimony from witnesses about important life changing events. Quotations and anecdotes put a personal face on evidence which is key to mobilizing people to action. However, despite its usefulness in the legal community, it is a style that is disparaged by the scientific community (Gamble and Stone, 2006).

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Example 2: The Application of Storytelling in Examining Health Care Inequities for African-American Women Knowledge gained through personal experience and communication through story-telling are both deeply rooted in the culture of African-American women. A study was conducted which captures on video the stories of 60 African-American women breast cancer survivors and/or family members of breast cancer survivors, and compares in a randomized clinical trial the effects of these stories vs. traditional educational videos in promoting the use of mammography among 900 African American women in urban neighborhoods. This study develops and tests a new exploratory model of narrative cancer communication, and therefore determines not only if women’s stories enhance breast cancer communication, but also show how and why they may. It is hoped that when completed, this program will reduce breast cancer risks among the study participants, provide culturally appropriate breast cancer communication, demonstrate the potential of narrative approaches to enhance the effectiveness of cancer communications, and reduce disparities among African-American women (Banks-Wallace, 2002; St. Louis University, 2005). The preceding examples indicate that, with the use of narrative, critical race feminism can be applied to disparities in health care for African-American women. Their voices provide a powerful basis for a social justice critique of the health care structure and sociocultural character of the health care environment. Critical ethnography. Ethnography can incorporate a “critical’ approach (Carspacken, 1995; Carspacken and Apple, 1992; Thomas, 1993) by including an advocacy perspective. Critical ethnographies are a type of ethnographic research in which the authors advocate for the emancipation of groups marginalized in society (Thomas, 1993). Critical researchers typically are politically minded individuals who seek, through their research, to advocate against inequality and domination (Carspecken and Apple, 1992). The major components of a critical ethnography are summarized as: including a value-laden orientation; empowering people by giving them more authority; challenging the status quo; and addressing concerns about power and control. According to Denzin and Lincoln (2003), the critical ethnographer studies issues of power, empowerment, inequality, inequity, dominance, repression, hegemony, and victimization. Researchers conduct their studies so that they do not further

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marginalize the individuals being studied. Thus, the inquirers collaborate with and actively involve participants in negotiating the final written report. Browne and Fiske (2001) conducted a study utilizing in-depth interviews with women about their experiences in the health system, utilizing critical ethnography. Health care encounters are important areas for study because they reflect the sociopolitical and ideological relations between patients and the dominant health care system. This study examined mainstream health care encounters from the viewpoint of women from a First Nations reserve community in Northwestern Canada. In-depth interviews utilizing critical ethnographic and feminist techniques gave the researcher a good sense of invalidating and affirming encounters. The narratives revealed that the women’s encounters were shaped by racism, discrimination, and structural inequalities that marginalize and disadvantage women. These women’s health care experiences have historical, political, and economic significance and are reflective of wider post-colonial relationships that shape their everyday lives. Mullings and Wali (2001) utilized critical ethnography and mixed methods to explore prenatal health status and health care inequities among residents of Central Harlem, who were predominately African-American. They also utilized the framework of the Sojourner Syndrome to inform their findings. Along with the Center for Disease Control’s (CDC) Preterm Delivery Research Group (Hogan and Feree, 2001), Mullings conducted research to understand the social and biological factors leading to the consistently increased risk for poor pregnancy outcomes among African-Americans. This research was designed to inform the development of appropriate prevention programs (which may inform program and agency policy). Specific methods included ethnographic field work, participant observation in 10 neighborhoods and worksites, intensive longitudinal case studies, and focus groups. Qualitative research was conducted using community participatory methods to describe the influences on prenatal maternal and child health among African-Americans. Specifically, participants responded to the question, “What is unique about the experience of being a Black woman in America that places you at higher risk for morbidity and mortality?” (Hogan and Feree, 2001; Upton, 2003). The qualitative data was used to develop new explanatory factors, to better understand how known factors interact in women’s lives, to provide in-depth descriptions, and to let community voices be heard. It was also important to describe the diversity within the AfricanAmerican community. The study specifically describes how a women’s experience of race, ethnicity, and gender translate into cultural, social, political, economic, and other environmental influences, that in turn provide the settings and exposures that influence health status and birth outcomes. The methodology provides a model process for how to translate this research into public health and social action. The community-partnered research practice resulted in stronger commitments to collaboration, better understanding of risks and resiliency, greater community empowerment, the design of viable solutions, and a committed local group of people ready to address the roots of racial/ethnic disparities in their community (Mullings and Wali A, 2001).

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Research Results: Informing Policy Recommendations and Advocating for Improved Health Care in Central Harlem In her discussion of results, as an advocate for the women, families, and community that she studied, Leith Mulling (2001) noted that the experiences of women in the health care system must be understood in the context of the wider social conditions and specific circumstances in their everyday life. Her ethnography points to potential sources of distrust of the system and the subsequent disengagement from it. She noted that: It is also clear that many people who live and work in Harlem have a sophisticated understanding of the interrelationships between social and economic factors, the delivery of health care, and their own vulnerability. The implication of these findings for improving health care delivery is that, in addition to structural changes to facilitate access, improvement in the quality of health care delivery is needed, including the adoption of a more holistic view of patient care (p.160).

She also noted that,

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Their simultaneous engagement and distrust of the medical establishment suggests that we must move beyond simple dichotomies about attitudes and behaviors. Rather, we must construct a more nuanced picture of women’s relationships with the medical system, analyzing in greater detail what women accept and what they do not, how they respond, and what alternatives are available to them (p160.).

In her report she highlighted that, the women selectively used the facilities according to their own expectations and views of appropriate prenatal care. Once they selected a facility, how they specifically used the facility, and what they used it for, was placed within their own wider framework of appropriate prenatal care. This framework included the existing social world, social networks, and the social views within which their pregnancy evolved, as well as alternative practices. The study notes that in designing public health interventions for Black women, the combined effects of various types of social hierarchies on the lives of Black women must be incorporated. She urged that public health interventions must, on the one hand, confront the multiple sources of strain that women of color face. These include the way gender inequity, racial discrimination, and class inequality imposes limitations on access to care, broadly defined, and also impact on availability of other resources. On the other hand, such interventions must also build on and support the protective mechanisms that women and men have developed, such as individual and collective coping strategies around housing, family, and community (Mullings, 2005; Mullings and Wali A, 2001; Upton, 2003). It is also clear from this study that medical and epidemiological studies that narrowly isolate individual risk factors cannot fully account for the differences in Black infant deaths rates as compared to Whites. This research incorporates the interrelationships between social, epidemiological, and physiological factors in research protocols and instruments. Such qualitative research will document the processes by which economic circumstances, environmental issues, and social conditions create a situation that exposes women to stress

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and chronic strain, and examines community assets and strengths to address the problem (Upton, 2003). Aside from the critical information that was drawn from this study, it is important to see how appropriate research methodologies and appropriate theories can inform the outcomes and usefulness of research. More specifically, the outcome of this study also suggests that listening carefully to women, speaking directly through their own words and their experiences, gives the scientific and policy community an opportunity to design interventions that make sense for the people they are supposed to benefit. Women say that they want to be empowered to take control of the resources so that they can take care of themselves and their children (Mullings and Wali A, 2001; Mullings, Wali A, McClean, MacKinnon, and Mitchell, 2001).

Another Method: Focus Groups a Preferred Method to Study Women of Color in a Cultural and Gender Context This discussion of focus groups will highlight: 1) what they are and their tools; 2) the advantages of using focus groups for studying African-American women and; 3) applications of focus groups in the field to address the needs of African-American women.

The Tools of Focus Groups

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Two major techniques used by researchers to collect qualitative data are participant observation and individual interviews. Focus groups, or group interviews, possess elements of both techniques while maintaining their own uniqueness as a distinct research method (Morgan, 1988). Fundamentally, focus groups are a way of listening to people and learning from them (Morgan, 1998). Focus groups allow access to research participants who may find one-on-one interaction intimidating. By creating multiple lines of communication, the group interview can offer participants a safe environment where they can share ideas, beliefs, and attitudes in the company of women of similar backgrounds. Some studies on focus groups show that group participants find their experience more gratifying and stimulating than individual interviews (Morgan, 1998).

Advantages of Using Focus Groups for Research on Black Women There are several reasons why focus groups may prove to be advantageous for conducting research with African-American women: 1) it gives Black women a voice; 2) focus groups are a form of collective testimony – a way of resisting and getting validated; 3) they provide more freedom and direction for the participants and; 4) they provide opportunities to listen to plural voices. Giving voice to women who have been silenced. For years most women of color have been silenced in research projects. Focus groups may facilitate women of color “writing culture together” by exposing, not only the layers of oppression that have suppressed these

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women’s expressions, but also the forms of resistance that they use every day to deal with such oppressions. Focus groups can be an important element in the agenda of social justice for women because they serve to expose and validate women’s everyday experiences of subjugation and their individual and collective survival and resistance strategies (Madriz, 2000). Providing a collective and stronger voice: The culture of storytelling and testimony. The focus group is a collectivistic rather than an individualistic research method that focuses on the multi-vocality of participants’ attitudes, experiences, and beliefs. However, in the social sciences, individualistic research methods have been predominant. Even among feminist researchers, who paradoxically emphasize the communal and collectivist nature of women’s lives, the most important research method is still the individual interview (Finch, 1984; Oakley, 1981; Wilkerson, 1998). As with participatory witnessing, Madriz (2000) places focus groups in the context of collective testimonies and group resistance narratives. They can be used by women in general and women of color in particular to unveil specific and littleresearched aspects of women’s daily existences: their feelings, attitudes, hopes, and dreams. Focus groups also have advantages for researchers. These include allowing scientists the ability to observe collective human interaction and allowing the researcher to hear plural voices. This latter advantage further allows researchers to gauge the “truth” and validate the truths and experiences of others (Madriz, 2000). Allowing for observation of collective human interaction and quick data collection. Focus groups allow social scientists to observe the most important sociological process – collective human interaction. Furthermore, they allow researchers to gather large amounts of information about such interactions in limited periods of time. Group interviews have gained in popularity among feminist and postmodern researchers (Madriz, 2000). Resists “othering” participants. Focus group research is more suitable than other forms of research for shattering colonizing discourses in which images of research subjects as “others” are constantly reproduced (Fine, 1994; Madriz, 1998). Several feminist researchers have reported how participants begin to discuss issues of interest to them without even waiting for questions from the moderator. Focus groups heighten the opportunities for participants to determine the direction and content of the discussion. As Michelle Fine (1998) remarks, qualitative researchers collaborate in the construction of the self-other. In fact, it has been asserted that the relationship between researchers and participants reproduces colonial and post-colonial structures (Madriz, 2000). Of course this may depend on who is doing the interview and how the interview is perceived, based on many factors. It has been noted by feminist researchers that utilizing group interviews minimizes some of the self-other distance in various ways (Wilkerson, 1998). First, multi-vocality of the participants limits the control of the moderator, who has less power over the group than over a single individual. Second, the unstructured character of the focus group interview guide decreases the control of the interviewer in the interview process. Finally, focus groups involve not only vertical interaction between the moderator and the interviewee, but also horizontal interaction among the group participants. The power relations that do occur are more likely between the participants, in their own constructed hierarchies (Madriz, 2000). Facilitating listening to plural voices. Rather than giving voice to the “other”, focus groups open possibilities of listening to plural voices of others as constructors and agents of knowledge. “The focus group facilitates the researchers’ ability to hear the plural voices of the participants. This multi-vocality of the group situation validates the participants’

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experiences with others of similar socio-economic, racial/ethnic, and gender backgrounds. This validation empowers participants, contributing to the construction of a research agenda embedded in the struggles for social justice (West, 1988)”. In a culture that highlights individualism and separation, shifting the research agenda in the direction of commonality and togetherness is, in itself subversive. In the tradition of testimony and witnessing, Madriz (2000) regards focus groups as a form of collective testimony. “Multi-vocal conversations” have been used by women for generations in the form of exchanges with their mothers, sisters, and female neighbors and friends. Although some call these conversations “idle talk”, “gossip”, and “chatter”, these dialogues have been a major way in which women have faced their social isolation and oppression. Thus testimonies, individual or collective, become a vehicle for capturing the socio-economic, political, and human challenges women face (Randall, 1998). The interactions foster interaction, self-disclosure, and self-validation. Communication among women can be eye-opening and consciousness-raising. They can build on each others’ experiences (Oakley, 1981). Women of color should be comfortable with focus groups because they are used to sitting in the kitchen or a hair salon and talking collectively. Sharing with other women has been one way that women have dealt with their oppression. Rina Benmoyor (1991), a Puerto Rican scholar, is one of a few scholars that has pointed out the transformative experience of collective oral histories. Social empowerment enables people to speak and speaking empowers people. Hill Collins (1998) argues that “breaking silence enables individual African-American women to claim humanity in a system that gains part of their strength by objectifying Black women” (p. 47). By speaking collectively, women reclaim their humanity.

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Applications of Focus Groups in Research with Black Women McBribe (1997) points out that research approaches used in women’s mental health research should allow us to understand the cause of the problem, what sustains the problem, and what can be done to eliminate the problem. A Black feminist approach that utilizes focus groups fits these criteria. Focus group narratives allow one to use the actors’ perspective, which includes contextual explanations for events. The author notes that their discourses about the context and production of dysphoria are in stark contrast to current psychiatric discussions, which are centered on biochemical causes of depression and medical treatment of the same. She notes that this does not suggest that there is no biochemical activity during depression, but rather, the political and social ramifications of an exclusive, biochemical approach to depression are questioned. She also highlights that her study results facilitate the discussion of why a publication designed to assist primary care providers in the diagnosis of depressive disorders completely omits the interactive risk factors that make Black women more vulnerable to depression. Poverty and racism play a strong role in this problem. Jackson, Phillips Hogue and Curry-Owens, (2005) developed an identity stress measure as part of a line of research designed to examine psychosocial risk factors for adverse reproductive outcomes, i.e. low birthweight and preterm delivery. The research was initiated from focus groups and interviews where women were asked to share their experiences of stress and support. Four hundred and seventy four African-American women from the metropolitan Atlanta area collaborated in the study by participating in one or more phases of

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the research. As a result of the qualitative data a 71-item race and gender specific stress measure for African- American women, which consisted of 6 subscales, including race/racism, burden, personal history, work, support, coping (stress mediator) and stress states was developed.

Quantitative Research and Intersectionality: Constraints and Challenges

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Addressing intersectionality and critical race feminism from a quantitative perspective presents its challenges, advantages, and pitfalls. The majority of feminist research that has been conducted utilizes qualitative tools. It is not easy to locate commentary or quantitative research that looked at intersectionality. A group of women led by a team of women from Harvard, the University of Wisconsin, and the University of Michigan launched the Gender Working Group consisting of faculty and graduate students interested in understanding how gender and race produced and reproduced differences within and between African-Americans. The group has grown into an interdisciplinary team of students, faculty, and administrators interested in research that expands knowledge on race/ethnicity, gender, and social class and health care. Further, this group came together to address the various constraints and challenges to addressing intersectionality in quantitative research (Carter, Sellers, and Squires, 2002). Meritt (2001) notes that intersectionality, while no doubt immensely valuable to critical and reformist scholars, still has limited practice to “capture the full complexity of human behavior” (p. 683). She provides examples of the power and pitfalls of empirical intersectionality utilizing quantitative methods. She notes that those who undertake empirical analysis must commit to unrelenting rigor. She suggests that the creation and application of increasingly sophisticated interaction terms helps researchers explain reality much better than single variable analysis. For greater detail read Deborah J. Meritt, Scholarly Influence in a Diverse Legal Academy: Race, Sex, and Citation Counts, 29J. Legal Studies, 34. Ironically, as the heightened awareness of the need for research that struggles with the intersections of race, class, and gender, gender bias in contemporary research became more difficult to expose. Many studies specify the sample’s composition and relegate complications of race and class to “future” research.

Challenges to Conducting Intersectional Research There are many constraints to conducting quantitative research relating to intersectionality including: 1) the multitude of social categories which should be addressed in intersectional research; 2) the need for more models to study race, class, gender and other categories together; 3) the cost and time to do the research; 4) the need to include contextual variables in models; 5) sufficient sample sizes and/or large enough data sets, and; 6) the need for new social class measures. Better models. Studying the intersections of race, class, gender, and other relevant social categories is a relatively new endeavor and a complex one. More models are needed for how to study these factors simultaneously in a way that captures the complexity of different experiences. It can be expensive and time-consuming to obtain large, heterogeneous samples

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to test hypotheses or launch qualitative research that requires interview staff and/or significant time in the field (Carter, Sellers, and Squires, 2002). The need for multiple categories to study Black women. Comparisons across and within groups by race, gender, and class are also difficult to find. In the Working Group’s research, the researchers encountered much difficulty locating empirical work that examined interactional differences for these three variables. They were more likely to find studies that examined the interactions between any two of these three social categories (e.g. race by gender differences). Even anthologies dedicated to the subject of race, class, and gender in the United States have little to show on the complex, intersectional study of these three social factors (Anderson and Collins, 2001; Carter, Sellers, and Squires, 2002; Rothenberg, 2001). Although the triumvirate of race, gender, and class are most often cited as important, it is important to remember that, when researching Black women for example, the intersections of age, sexual orientation, ethnicity or national origin, and religion may also be crucial to understanding the problem at hand. In addition, we must begin to recognize and analyze ethnic differences within racialized groups. Recent demographic changes necessitate attention, both theoretical and empirical, to the interaction of ethnicity and race within the Black race. Limits of traditional quantitative tools. The conventional pair wise comparisons used in social science research limit the vision of what the progress of one group means relative to another, when certain contextual and social categories are excluded. Certainly it is rare to find research where race, class, and gender are considered in tandem. Lack of multidimensional comparisons may result in homogeneous assumptions about race, gender, and class. Cole and Stewart (2001) note that comparisons across identity groups are often made using essentialist notions of group differences, resulting in what they refer to as invidious comparisons. This is not to say of course, that comparative research should not be done, but it should be considered carefully to resist the tendency to reinforce or reify social inequalities. For example, research by Glazer and Moyihan (1995), reported in Beyond the melting pot, serves as a stark example of how de-contextualized comparisons can produce devastating public policy and reinforce offensive stereotypes. We are often faced with the juxtaposition of sociological data that declares progress for African-American women, while images of welfare queens, matriarchs, and oversexed teens circulate in popular culture and political discourse. Therefore, anemic attempts to combine, race, class, and gender can translate into myopic conclusions and perhaps misguided debates over public policy(Carter, Sellers, and Squires, 2002). Need for larger data sets. While there have been great strides in theory, empirical studies lag behind. Datasets with sufficient sample sizes and measures of social class that do not simply account for socioeconomic differences (e.g. income, education, occupational prestige), but also social divisions related to wealth, domination-subordination, and demand/control ratios in work environments, are needed. Additionally, there is currently a lack of statistical information to assess the health status and health care situation of African-American women, utilizing these aforementioned variables (Carter, Sellers, and Squires, 2002).

Methods to Address Challenges In an attempt to address how an intersectional perspective can be incorporated into a quantitative approach, Wilkinson (2003) suggested that to explore statistical intersections,

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individual identity markers that are highly correlated should be combined into a single variable. Hancock (2007) has recently argued that “intersectional empiricists cannot rely on the same old data, or more precisely, data collected in the same unitary way”. Hankivsky and Christoffersen (2008) explored this issue by positing a Randomized Controlled Trial embedded in an intersectional model. In such a model, representational sampling would be prioritized, the types and numbers of variables would change (e.g. they capture key dimensions of inequality in any study), and the way in which variables interact with one another would be brought to the foreground. Analysis of diversity would no longer entail the comparison of White/Caucasian males (i.e, the norm) to others, but would consist of a more descriptive, non-hierarchal statistical approach exploring differences among and between individuals of various backgrounds (Vinz and Doren, 2007). Hancock (2007) has also introduced fuzzy set theory, which is a complementary to an intersectional perspective. Fuzzy set theory is an analytic tool which measures within group diversity and more specifically, assesses the degree of measurement in certain socio-cultural category such as gender, race/ethnicity, and class (Ragin, 2000). Traditional quantitative measures assume either membership in a category or not representing 0 or 1. Fuzzy set theory allows membership to be assigned between 0 to 1 depending on graded membership based determined and operationalized by the researcher based on a variety of contextual factors at the individual and institutional level (Tauchert, 2002). Racial identity, skin color, sexual orientation and many other binary concepts can be transformed to measure greater diversity among and between individuals.

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Examples of Intersectional Research Utilizing Quantitative Methods Despite these challenges there has been some cutting edge, quantitative, intersectional research addressing health care and other issues for women of color. Studies by Lillie-Blanton (1996), Rainey, Poling, Rheaume, and Kirby (1999), and Murell (1996) are highlighted to exhibit how race, gender, and class all make a difference in research findings. African-American women are an important subgroup that has received little attention in research on patient satisfaction. They are diverse with regards to class, income, education, and service use. Race and gender do not make a group monolithic. Lillie-Blanton’s (1996) study showed that low income; poorly educated women have fewer options and feel less able to manage the health care system as compared to highly educated and higher income women. Poor women report feeling treated like stereotypical “welfare queens” living off the system, during health care interactions. In these situations, their response is to withdraw from the system or change providers. On the other hand, highly educated and high income AfricanAmerican women are better equipped to manage the health care system when they feel stereotypes are present. Their response is to request better service. These women may: possess more confidence in negotiating a specialized system of care; have more influence with their provider; share more information with their provider; and receive more courtesy and respect from their provider. This study also highlighted the importance of conducting research on African- American women in unique ways. One important consideration is to develop instruments specifically designed to capture the unique concerns of African-American women in the area of patient satisfaction and other areas. For instance, there may be a need to address the stereotypes that

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women of color perceive during treatment, and other concerns of African-American women. Methods to include the perspectives of a cross-section of African-American women should be available. Only with such information will it be possible to level the playing field and facilitate access to and use of health care services based on need (Carter, Sellers, and Squires, 2002). According to Sen, Ostlin, and George (2008), there has not been much quantitative intersectional analysis based on large data-sets. Some recent work holds promise for the development of simple techniques for quantifying and testing the intersections (Iyer, 2007, Iyer et al., 2007a). It suggests strongly that economic class should not be analyzed by itself, and that apparent class differences can be misinterpreted without gender and racial analysis.

Recommendations from the Literature about Conducting Intersectional Research As we review and consider research on African-American women in health care and intersectional research on women as a whole, a number of recommendations have been presented, from a variety of sources. In this section some of these recommendations, which address governmental and academic research are highlighted. The following are a synthesis of various recommendations. • • • •

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• • •

Conduct research that focuses on the complexities of sex, race, and gender that underlie the cumulative effects of gendered lives Situate SES, gender, and race in the context of historical and socio-political power relations Promote the development and uptake of innovative methods that captures these dynamic effects Ensure that attention to these issues does not contribute to pathologizing any group. This is important because paradoxes arise when attending to marginalized voices, in that people may facilitate dangerous labeling and stereotypes All analyses must be done by gender/race Combine the strains of feminist research methodologies (qualitative and quantitative) Utilize critical race methodologies and analysis, including storytelling and emerging qualitative methods to strengthen the applicability of critical race theory to social problems (The Canadian Institute for Health Research, 2003, Romany, 2001)

Weber (2006) suggests that intersectional scholarship can make further contributions to shifting the focus of health inequities research by asking new questions that emanate from the position of outsiders within and that are generated from an explicitly recognized social change agenda. Since the goal of health inequities scholarship is not only to understand the processes producing inequities, but also to eliminate them, a key problem for scholars is how to bridge the gap between academic theory and social action. Perhaps one of the central principles under-girding intersectional conceptions is the intersecting systems of power between dominant and subordinate groups. Power relationships usually exist at the macro level of institutions and the micro level of interpersonal relationships. Intersectional analysis (relating to race and gender) is critical to understanding health care inequities. Intersectional analysis creates a tension and a dilemma about how to bridge the

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divide between the traditional empirical methods utilized in health care research, the qualitative, biomedical, and economic approaches utilized in health inequities research, and the mixed and qualitative methods used in the study of women and gender issues (DeVault, 1999). Intersectional and public health scholars recognize the need to facilitate dialogue, meaningful exchange, and collaboration among traditional researchers in order to make an impact on health inequities in regard to science and policy. This may ultimately result in their work and perspectives being more understood and integrated into the larger frame of analysis on health care inequities (Weber, 2006). There have been critiques of the methods used and the perspectives of intersectional researchers and traditional researchers. Some have raised the point that feminist research has relied heavily on qualitative data, which has made it difficult to assess whether change has resulted from feminist-based interventions (Devault, 1999). On the other hand, many biomedical/economic researchers have been criticized for being too fixed on measurement and quantification, which becomes the end in itself and eschews action (Collins, 1998; 2002a; Devault, 1999; Mies, 1983). Despite the disconnect between research based upon different perspectives and preferred research methodologies, there are several avenues for promoting dialogue and collaboration among intersectional, critical public health researchers, and those who utilize traditional biomedical and economic paradigms in their research. There could be many benefits to this dialogue including: ensuring the research/policy agenda takes into consideration intersectional questions; ensuring the quality and rigor of both qualitative, mixed, and quantitative methods; and empowering all to be involved, by giving all participants access to the expertise of others and utilizing accessible language across disciplines (Collins, 2000; Strand, 2003; Weber, 2005). The above parameters will provide a rich lens for research and analysis of inequities in health care for women of color and will therefore attempt to synthesize the scientific, political, neutral, and oppositional. These multiple visions result from efforts to conduct practice and policy research that simultaneously utilizes methods putting the interests of women of color at the center, and also utilizes mainstream social science research to maximize the impact of policy which governs practice.

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CONCLUSION In sum, an intersectional framework has been presented as an alternative mechanism to address health care inequities for African-American women. This chapter provides evidence that health care quality and access is best understood within the social, economic, and political context of Black women’s lives. How health care inequity problems are framed relate to how their causes and solutions are conceptualized. The term intersectionality has been used by many feminists of color for many years. An intersectionality framework opens new intellectual space for knowledge and research production. Generally, research and policy, from an intersectional perspective, includes race/ethnicity, class, gender and their interactive and multiplicative nature. The chapter highlighted an in-depth look at the following three questions which provide a guide to understand how intersectional research methods can facilitate appropriate study of African-American women:

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What is lacking with traditional research methodologies for conducting research on African-American women? 2) What are the origins of intersectional scholarship, and why is it appropriate to use this approach to study African-American women? 3) What is (are) the general framework(s) used for intersectional research?

This chapter acknowledges how intersectional scholarship usually takes on a social justice frame, and takes a research stance of engaged subjectivity and reflectivity analysis. There are concepts and theories that relate to African-American women that can be utilized to aid in planning how to conduct intersectional research on health care inequities for women of color. For example, Womanist Theory uses an Afro-centric approach and thus moves our perception of the research process in a new direction. Participatory Witnessing is another method that emanates from Womanist Theory. Black Women’s Political Thought is a method that suggests specific ways to gain knowledge about Black women’s lives. Critical methodologies utilize tools that facilitate eliciting data which will aid in a social/structural analysis of an event, situation, or problem. Critical Race Methodology which is based on Critical Race Theory is a tool that exposes deficit-informed stories that distort the study of knowledge among people of color. With the use of the narrative, Critical Race Feminism can be applied. Specifically, Story-telling as a way of gathering data and facilitating communication is a key method of intersectional research. Story-telling is a deeply rooted tradition within the culture of African-American women. Critical Ethnography is used to incorporate a “critical’ approach by including an advocacy perspective. As an advocate for the women, Critical Ethnography research reveals the experiences of women within health care systems from the context of the wider social conditions and their specific life circumstances. Focus Groups are another method used within the intersectional framework to give Black women a voice, and form a collective testimony. Although the predominate thinking in research on women, particularly intersectional research, is the use of qualitative methods, quantitative, and mixed methods can be conducted. However, it is not easy to locate commentary or quantitative research that involves intersectionality. Two major constraints regarding quantitative research from an intersectional approach include, the multitude of social categories and the need for more models to study race, class, gender and other categories together. Comparisons within groups of Black women by class are hampered as large sample sizes are difficult to find. Despite challenges there are a few cutting edge quantitative, intersectional studies addressing health care issues of Black women. Given, the state of research and policy from an intersectional perspective, this chapter provides a number of recommendations that are derived from a variety of sources. Finally, research presented in this chapter reflects both dominant methodological and critical oppositional views because it utilized data gathered from traditional mainstream and non-traditional sources. The chapter filtered techniques and data through a critical race feminist/womanist prism that critically examined the causes of the findings. The chapter used data that was gathered with oppositional methodologies to highlight the true experiences of women of color. This is the critical race feminist/womanist way of knowing and seeing. Thus, this chapter provides valuable gems to inform research, policy, and practice.

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US Commission on Civil Rights (1998). Acknowledging Disparity, Confronting Discrimination, and Ensuring Quality, The Role of Federal Civil Rights Enforcement. In US Commission on Civil Rights (Ed.). Vinz, D., and Doren, M. (2007). Diversity policies and practices - a new perspective for health care Journal of Public Health, 15(5), 369-376. Walker, A. (1983). In Search of Our Mother's Gardens: Womanist Prose New York: Harcourt Brace Javanovich. Weber, L. (2006). Reconstructing the Landscape of Health Disparities Research: Promoting Dialogue and Collaboration Between Feminists Intersectional and Biomedical Paradigms, Gender, Race, Class, and Health (pp. 21-59). San Fransisco: Jossey-Bass. Weselman, L. (1999). Transcending Traditional Notions of Mothering: The Need for Critical Race Feminist Praxis. Journal of Gender, Race and Justice, 3. West, C. (1988). Marxist Theory and the Specificity of African- American Oppression. In C. Nelson, and L. Grossberg (Eds.), Marxism and the Interpretation of Culture. Urbana: The University of IIlinois Press. Wilkerson, S. (1998). Focus Groups in Feminist Research: Power, Interaction, and the Coconstruction of Meaning. Women's Studies International Forum, 21, 111-125. Williams, D. (1989). Womanist Theology: Black Women's Voices. In J. Plaskow, and C. Christ (Eds.), New Patterns in Feminist Spirituality. San Fransisco: HarperCollins. Williams, K., and Johnson, V. (2002). Eliminating African- American Health Disparity via History-based Policy. Harvard Policy Review, 3(2). Wing, A.K. (1997). Introduction. In A.K. Wing (Ed.), Critical Race Feminism. New York: New York University. Wing, A.K. (2002). Global Critical Race Feminism New York: New York University Press. Working Group on Women and Human Rights (2002). Priority Issues in the Race and Women Agreed Conclusions: The United Nations. Yanow, D. (1993). The Communication of Policy Meanings. Policy Sciences, 26(1), 41-61. Yanow, D. (1996). How Does A Policy Mean? Intepreting Policy and Organizational Actions Washington, D.C: Georgetown University Press Yanow, D. (2000). Conducting Interpretive Policy Analysis Thousand Oaks, California: Sage Publications. Zinn, B., Cannon, L., Higginbotham, E., and Dill, B.T. (1986). The Costs of Exclusionary Practices in Women's Studies. Signs: A Journal of Women and Culture in Society, 11(2), 321-333.

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Chapter 2

GENETICS AND THE HEALTH OF AFRICAN AMERICAN WOMEN: FINDING THE CURE FOR DISEASE AND THE CURE FOR SOCIAL ILLS Deborah Cohen ABSTRACT The advances in genetics have resulted in the ability to diagnose thousands of diseases and hold much promise for treatment and cure. This chapter provides a brief overview of genetics and its impact upon the concept of race. The historical context and legacy of the Eugenics Movement in the United States and its impact upon the health of African American women is then discussed. The third section then describes the social, legal and ethical issues that arose when the first community program to screen African Americans for a genetic disorder was implemented. The resulting policies that are now prominent in all genetic and research laws is discussed. The chapter concludes with an analysis of the knowledge and attitudes of African American women towards genetics and presents some implications for genetics impacting upon their health.

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A BRIEF OVERVIEW OF GENETICS Seemingly miraculous advances in genetics have been achieved over the past 50 years since the discovery of DNA. These advances have resulted in a marked increase in knowledge about the biological and chemical basis of human diseases. More than 40 years ago, it was recognized that changes in the microscopic appearance of chromosomal structure or number could result in clinical disorders such as Down syndrome. Research that began 30 years ago in the 1970s focused on alterations in the DNA molecule. These investigations led to the establishment of an entirely new field of molecular genetics, resulting in the complete sequencing of the entire genome of humans as well as many other animal, plant and microbial species. Investigations are now underway to determine the relationship between alterations in the DNA sequence and human disease and disabilities (McCormack, 2005).

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Many of the advances in human genetics have been assimilated into the mainstream of medical practice in obstetrics, pediatrics and internal medicine. Laboratory medicine has embraced the field of clinical cytogenetics, biochemical genetics and molecular genetics as specialty areas of clinical pathology. Public health has incorporated a number of genetic testing protocols that are designed to prevent the occurrence of human genetic diseases in the human population (McCormack, 2005). Heterozygote (carrier status) screening programs for inborn errors of metabolism, such as Sickle Cell Disease, Tay Sachs Disease and beta Thalassemia, have provided information to individuals who carry a single copy of an allele (mutant gene) for a particular genetic disease found in certain ethnic or racially defined populations. These programs were initiated in the 1970s as the technology to identify the aberrant genes that became available. Because some of the disorders are associated with specific ethnic or racial populations, e.g., Sickle Cell Disease and persons of African descent, the original screening programs were community based. By the 1980s, screening for specific disorders had been incorporated into preconception or prenatal healthcare or, as in the case of Sickle Cell Disease, newborn screening programs. All of these emerging technologies have resulted in the development of a new branch of medical practice known as Medical Genetics, a board certified medical specialty with residency and fellowship training. The provision of medical genetic services is enhanced by laboratory scientists and genetic counselors who provide specialty care in their respective areas. The recent assimilation of clinical genetics into medicine, however, raises new challenges as well as potentially deepening current difficulties with respect to equity and accessibility in the provision of health care. Further, the identification of genetic predisposition for specific diseases among African American women underscores the thin line between improving health status and discrimination in treatment.

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Table 1. Recessive Genetic Disorders and Associated Biogeographic Populations

As is illustrated in the table above, specific genetic disorders are associated with specific groups of biogeographical origin, or race. However, one of the most profound findings of the Human Genome Project is that the genetic make-up is 99.9 percent the same among all humans, irrespective of biogeographic origin. As a result, the relationship between race and genomics has become a major focus of investigation. A recent article, "Deconstructing the Relationship between Genetics and Race"

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raises several important issues. These issues include "whether individuals can be reliably allocated into valid genetic clusters in which all members have more recent common ancestry than members of other clusters, whether descriptors such as race or ethnicity capture any of the genetic differences between such clusters, and whether these differences are meaningful for health-related variation among groups" (Banshard, et al, 2004, P. 607). In short, the traditional use of classifications of race is being called into question as a valid parameter when considering genetic factors.

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THE HISTORICAL CONTEXT AND LEGACY OF THE EUGENICS MOVEMENT IN THE UNITED STATES The abuse of Black slaves, and later, free women and men, for medical experimentation has a long and cruel history in the United States. Soon after this country's founding, Thomas Jefferson inoculated his slaves with cowpox in an effort to protect against smallpox, based upon Edward Jenner's description of the procedure in 1796 (Washington, 2006). Only after 200 of his vaccinated slaves avoided succumbing to the illness did Jefferson inoculate his White family. The prevailing attitude of African slaves as not being quite human and thus lacking the ability to feel pain justified the abuse of slaves in a broad range of medical experimentation. Such experimentation was the norm and is well-documented, e.g., Dr. Robert Jenning's inoculations against typhoid; Dr. John M.B. Hardin's experiments in anatomical knowledge; and, most notoriously, Dr. James Marion Sims' extensive experiments with both women and children (Washington, 2006; Prograis and Pellegrino, 2004). Prior to the seventeenth century, race generally referred to nations and families rather than to species. During the seventeenth and eighteenth centuries, race began to be used as the basis of a methodology by which perceived biologically different types of humans could be studied and measured. These systems of classification and categorization or taxonomy were traditionally used to categorize the natural sciences (Washington, 2006). Carolus Linnaeus, the most well-known ethnologist, applied these principles to humans and developed a taxonomy based upon theorized evolutionary origins. Within this schema, Linneus labeled Black persons as a subspecies, homo afer. Predominant attitudes placed Africans and their descendants at the bottom of the evolutionary scale. The Eugenics Movement is important to the issue of contemporary genetics and the health of African American women in so far as it represents the efforts to legitimize discriminatory legislation based upon heredity, race and ethnicity. The term “eugenics” (from the Greek word eugenes meaning “well-born”) was first introduced by Galton in 1883 “to describe the systematic study of the ideas of heredity to humans with the objective of improving (or at least stopping the degradation of) human genetic stock” (Lappe, 1979: 16). Galton, having been greatly influenced by Charles Darwin’s Origin of the Species (1859), stressed that human abilities, both physical and psychological, were the direct results of heredity (Haller, 1963). Neither environmental interactions nor social advantages were considered variables which impacted upon the capabilities of man. The American Eugenics Movement initially occurred as part of the overall Progressive Reform Movement. During the early years, from about 1870 to 1905, the movement was characterized by the development of hereditarian ideas and attitudes and their transformation

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into a field of scientific inquiry. Common belief held that social deviants were products of their heredity.

Credit: :Science Museum/Science and Society Picture Library.

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Caption: Coloured engraving by the British artist John Emslie after his original drawing, showing facial portraits from different parts of the world, and demonstrating racial and regional differences. The portraits are grouped under the headings: Asiatics, Australians, Europeans, Polynesians, Africans and Americans, and illustrate European perceptions of people indigenous to each area. One of 44 engravings on the subjects of geography, geology, astronomy and natural philosophy, published by James Reynolds, London, 1850-1860. In Collection of: Science and Society Picture Library.

As a result, social institutions that had been created during the Jacksonian Era of moral treatment gave way to an ideal of custodial care, including large institutions for the insane, prisons, and work houses. By the mid-1890’s, laws had been promulgated by many states to prevent marriages between social deviants. Immigration, too, presented a threat to the maintenance of lineage purity among American nativists. The term “nativist” distinguishes between Anglo-Saxon descendents who had immigrated several generations earlier and who identified with the values of the AngloSaxon race and the native Americans or Indians. Doctrines of racial inferiority had originally applied to those of African descent. These concepts were now generalized to include Southern and Eastern Europeans and Oriental immigrants based on the belief that these ethnic groups, like those from Africa, lacked the biological traits necessary for assimilation of the customs and values of the American nativist (Haller, 1963). In 1900 the Mendelian pattern of inheritance, which had originally been published in 1865 and was largely ignored, was rediscovered by the scientific community. The Mendalian pattern of inheritance is the expression of recessive genetic traits whereby the breeding of two carrier parents results in a mathematically predictable combination of genes that result in well, ill or carrier offspring (Washington, 2006, P.190). Many metabolic conditions follow this pattern, including Sickle Cell Disease, Tay-Sachs Disease, and red-green color blindness.

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The birth of an affected child from unaffected parents indicate that the parents are carriers of the specific gene(s) and the probabilities for each of their children to inherit the gene or disease adhere to a predictable pattern: 25% chance that the child will be affected by having inherited the aberrant gene from both parents (disease state), 50% chance that the child will inherit an aberrant gene from only one parent (carrier state), and 25% chance that the child will inherit the normal gene from both parents. The diagram below provides a graphic illustration of the Mendelian or the autosomal recessive genetic pattern of inheritance, whereby “R” refers to the normal recessive gene and “r” pertains to the affected gene. The Mendelian pattern of inheritance provided powerful ammunition to the reinforcement of eugenic ideals. Selective procreation could be used to enhance the “blood stock.” These laws were interpreted to be undisputed scientific proof that “much of human misery and disease, as well as the more positive characteristics of natural ability and intelligence…would lend themselves to simple inheritance patterns” (Lappe, 1979: 17). Single genetic factors alone were perceived as the cause of and explanation for racial differences and social deviancy. During the first two decades of the twentieth century, Mendelian genetics were applied in an uncritical fashion to research in the United States. Persons considered to be of good social class, primarily the nativists and others from Northern Europe, were eugenically superior. Recent immigrants, Blacks, criminals and persons who were feeble-minded or defective were deemed eugenic misfits. The predominant belief was that these groups of persons were poor and uneducated due to innate characteristics that could not be altered and improved by environmental factors.

Source: NationMaster Encyclopedia.

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Because restrictive immigration laws were initially vetoed, Congress established the Immigration Commission in 1907 to study the impact of immigration upon American society. The Commission concluded that new immigrants were exerting a poor influence on American society, citing the negative impact of new émigrés on employment, housing, crime, sanitation and mental illness. It recommended the use of literacy tests as the measure of social acceptability (Haller, 1963). The importation of the Binet intelligence test in 1910 thus added the essential link between genetics and disease as well as with social inferiority among ethnic groups. The establishment of the Station for Experiment Evolution (SEE) and the Eugenics Record Office (ERO) provided the context in which research could be conducted on human heredity through the quantitative mapping of human traits (Washington, 2006). The ERO collected enormous amounts of data from scientists and physicians regarding their patients’ medical and family histories, much of which was used as evidence and validation of the physiologic inferiority of African Americans. In 1917, Congress passed the first law requiring a literacy test as a prerequisite for immigration. A second law was enacted in 1921 that limited immigration to three percent of the foreign-born in the United States according to the 1910 census. As few persons had been allowed to emigrate from Africa during this period, and as few African Americans were included in the 1910 census, this legislation essentially barred immigration from Africa. The ERO provided extensive statistical research that formed the basis of the National Origins Act of 1924 (Washington, 2006). This legislation barred immigrants from Southern and Eastern European countries on the basis of being “dysgenic” and decreased the allowable quotas to two percent, based on the 1890 census (Howard and Rifkin, 1979). While federal legislation insured that immigration from Africa was limited, states began to initiate laws that were intended to restrict even more severely those considered to be eugenic misfits. Sterilization had long been a cruel method by which African American women were prevented from bearing children. Indiana was the first state to enact a sterilization law in 1907 which called for “mandatory sterilization of confirmed criminals, idiots, imbeciles and others in state institutions when approved by a board of experts” (Howard and Rifkin, 1979: 16). By 1911, six states had passed similar laws and by 1935, forty-four states had enacted compulsory sterilization legislation for “the feebleminded, those on welfare, or those with genetic defects” (Washington, 2006, P. 202). Despite legal challenges to the state laws, including several that were reviewed by the Supreme Court, compulsory sterilization of those with mental deficiencies, criminals and African American women continued into the 1950s. Because of the rise of a nascent civil rights movement for persons with mental retardation who were institutionalized, sterilization decreased rapidly in the 1960s. However, a review published in 1966 noted that at least 23 states retained the old laws, and in more than 10 states, epileptics and criminals were still considered appropriate subjects for sterilization (Reilly, 1977). In the years between 1956 and 1968, sterilization and social policy received much attention with respect to African American women. Welfare programs, particularly Aid to Families with Dependent Children (AFDC), expanded rapidly. This circumstance resulted in the generation of legislation that attempted to place qualifications on the receipt of welfare benefits through child-bearing restrictions. Most of the state laws did not overtly address sterilization but were designed to decrease the birth of illegitimate children (Reilly, 1977). Because illegitimate births among African American women occurred more frequently than among Whites, the state bills were inherently racist. However, sterilization of African

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American women began much earlier and with the support and approval of highly esteemed and reputable White and Black personages. Lead by the most famous birth-control pioneer and feminist, Margaret Sanger, the movement to establish Planned Parenthood Clinics took hold in the 1960s, particularly after the Pill became available. However, Sanger was also one of America’s most prominent Eugenicists. Beginning in 1929, she revolutionized socio-demographics when she began to focus on “class” and “income level” rather than “good or bad breeding stock” as a means of studying birth patterns of African American women who lived in Harlem. Sanger entitled the June 1932 edition of her journal Birth Control Review “The Negro Number,” and she recruited Black leaders to contribute articles in support of the eugenic cause (Washington, 2006). The founder of the National Association for the Advancement of Colored People (NAACP), W.E.B. Du Bois wrote, “The mass of ignorant Negroes still breed carelessly and disastrously, so that the increase among Negroes, even more than the increase among Whites, is from that portion of the population least intelligent and fit, and least able to rear their children properly” (Washington, 2006). In his contribution to the journal, Fisk University’s first Black president, Charles S. Johnson, stated that “eugenic discrimination” was necessary for Blacks (Washington, 2006). In 1939, Sanger’s American Birth Control League merged with the Clinical Research Bureau to form the Birth Control Federation of America (BCFA). In the same year, Sanger designed the Negro Project which “was established for the benefit of the colored people,” specifically Black women who were denied access to city health services. The purpose of these first family planning centers was to decrease the Black population through the implementation of eugenic principles. To this end, acting on Du Bois’ recommendation, help and support was solicited from Black churches. In the 1950s and 1960s, luminaries such as Adam Clayton Powell Jr. and the Reverend Martin Luther King, Jr., assisted in Sanger’s efforts. It is sobering that the concept of reducing social ills among African Americans through the implementation of negative eugenics had its strongest foothold during the Civil Rights Movement. Birth-control clinics were greatly expanded during President Lyndon Johnson’s War Against Poverty and these clinics became an even stronger thread in the fabric of social policy with the advent of the Pill. The Pill was made available to poor Black women free or cheaply from government-supported Planned Parenthood Clinics in urban settings. However, it was the practice of involuntary sterilization, or the “Mississippi appendectomy,” that finally woke the consciousness of African Americans that the federally financed birth-control clinics were being used as “the best way to limit or even to erase the Black presence in America” (Washington, 2006, P. 198). A resolution was passed at the Black Power Conference in Newark, New Jersey in 1967 that articulated and equated the use of birth control with “Black genocide” (Washington, 2006). While “genocide” is a deeply divisive term and inflammatory term, support for the application of this term to the racially discriminatory use of birth control and involuntary sterilization is found in a United Nations resolution. In reaction to the Holocaust carried out by the Nazis, the United Nations Convention on the Prevention and Punishment of the Crime of Genocide unanimously passed a provision proscribing any attempt to destroy a racial or religious group by killing or harming its members on December 9, 1948. Resolution 260 (III) A of the United Nations General Assembly of 1948 states:

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Deborah Cohen Genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, as such:…(a) Killing members of the group; (b) Causing serious bodily or mental harm to members of the group; (c) Deliberately inflicting on the group conditions of life calculated to bring about its physical destruction in whole or in part…(d) Imposing measures intended to prevent births within the group; and (e) Forcibly transferring children of the group to another group (Washington, 2006).

Research conducted during this period document that genocidal fears among African Americans had deepened. The American Journal of Public Health published the results of a study in 1972 documenting that forty percent of surveyed Blacks believed that the purpose of birth-control clinics was to eradicate Blacks. These respondents also evinced a strong distrust of sterilization programs, abortion clinics, and any birth-control clinic administered by Whites. Gender differences were documented showing that men were more likely to denounce birth control as genocide than were women. Socioeconomic demographic characteristics varied as well. Those men who were young, less well-educated, poor, and resided in northern states were more likely to hold genocidal perceptions. Most Black women reported that they supported birth control and showed more tolerance for abortion (Washington, 2006). Although there is much greater awareness today and conscious efforts are made to avoid racial discrimination, negative eugenics continues to haunt much of America’s public policies. The enactment in the 1990s of the Temporary Support for Need Families Act (TANF) which replaced AFDC, places restrictions upon the number of children a single or adolescent woman may have while still remaining eligible for support. The legacy of the Eugenics Movement of the twentieth century, which resulted in restricted immigration from Africa and in legislation/policies to reduce the African American population, is, perhaps, that generations of George Washington Carver and Martin Luther King were not allowed to be conceived.

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PUBLIC HEALTH POLICES AND MISGUIDED BENEFICENCE – THE CASE OF SICKLE CELL DISEASE The rapid evolution of genetics as a branch of medicine has brought to the foreground heightened concern with bioethics. Principles that assess the relative benefits and risks of medical procedures have been incorporated into health care training and practices. The purpose of the assessment is to find equilibrium between the principle of beneficence or “to do good” and the principle of nonmaleficence or “to do no harm” (Lea, et al, 2005). The impetus to screen African Americans for Sickle Cell Disease (SCD) arose during a unique period in our history, when consciousness about the social inequities inherent in American attitudes and perspectives was raised and the will to address discrimination and racism took root. In the late 1800’s, physicians reported that some of their Black patients appeared to have an unidentified disease with a broad range of symptoms that included severe pain, bruising, strokes, anemia and extensive sores. It was not until 1910, however, that Sickle Cell Anemia (now referred to as Sickle Cell Disease) was first diagnosed by cardiologists James B. Herrick and Ernest E. Irons. They identified the “thin, elongated sickle-shaped” red blood cells and,

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when Herrick published these findings, he accredited the disease to occurring only to Blacks. In contemporary times, it has been documented that most of the 72,000 Americans with SCD are descended from Northern Africans or sub-Saharan Africans with one out of every five hundred African Americans affected (Washington, 2006). However, SCD is not an exclusively Black disease. An estimated one out of every one thousand to fourteen hundred Hispanic Americans also have the disease and it effects millions of people internationally, including South and Central America, Saudi Arabia, India, Turkey, Greece and Italy. The common denominator among this wide spread disorder is that SCD occurs fairly consistently wherever the malaria-bearing Anopheles mosquito is prevalent. The sickling gene appears to provide protection against some strains of malaria. As a result, persons who are carriers of the gene have an evolutionary advantage in areas where malaria is common and remain symptom free. Despite the wide-spread occurrence of the disease among all races and ethnicities, the identification of SCD as a “Black disease” is firmly entrenched in medicine. While it was President Richard Nixon who first brought national attention to SCD by focusing on it in his 1971 health message, the impetus to initiate large community-based mass screenings began almost a decade earlier. In the early 1960s, the Italian High Commission for Hygiene and Health initiated a national screening and preventive counseling program to educate about the procreative risks associated with beta-thalessimia or Cooley’s Anemia. Along with SCD, this recessive genetic disorder is classified as a hemoglobinopathy. In 1964, as a result of the success achieved in preventive education and screening for Cooley’s Anemia, the World Health Organization suggested that ““the same measure could be readily applied to sickling and sickle cell anemia and, if accepted by a high proportion of the population, could lead to a dramatic fall in sickle cell anemia in a single generation” (Reilly, 1977, P 65). A sensitive electrophoretic test to identify the sickle cell trait had been available for several years, but it was too expensive to use for large community screening. A solubility assay was developed in the 1960’s which reduced the cost substantially but was not sensitive enough to identify a significant percentage of persons with the abnormal hemoglobin. Despite this false negative problem, the inexpensiveness of the assay resulted in the proliferation of community mass screening programs in the early 1970’s. In addition, while the disease is incurable, the use of prophylactic antibiotics was beginning to demonstrate some effectiveness in the palliation and management of the disease. The original purpose of the SCD screening legislation was intended to attain an admirable goal. The legislation was enacted in a period that was still reeling from the turbulent 1960’s, the emergence of the Civil Rights Movement, and the Anti-Poverty Campaign. The laws served as an initial response to requests by and with the support of Black citizens. Legislators, both on the state level and in Congress, recognized that the passing of laws to address the problem of SCD was a mechanism by which they could address some of the social inequities charged by the Black community. Between mid-1971 and the end of 1972, twelve states and the District of Columbia had enacted laws to establish screening programs. The majority of states did not make testing compulsory and the laws focused on the identification of persons with the gene and to inform couples who were both carriers of the risks they faced in childbearing (Reilly, 1977). The quality and content of the statues varied greatly among the states. While most recommended premarital screening, others recommended testing of school children. Three states – Georgia, Maryland, and Kentucky – made provision for genetic counseling; three states – Maryland, Mississippi and Virginia –

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provided funds for public education; and Maryland alone insured confidentiality of both participation and test results (Reilly, 1977). Within a few months of the passage of the state laws, criticism concerning the statues arose, with the medical community leading the objections. Crude testing methods, poorly planned screening programs and neglect in regards to identified carrier follow-up, program evaluation, public education and genetic counseling were cited as major areas of objection. One of the most crucial problems was the lack of education to both the Black community and to the general population with respect to the differentiation between the heterozygote state (carrier) and homozygote state (affected). This resulted in some insurance companies increasing their premium rates for carriers of the trait and some employers requiring genetic screening, supposedly to protect vulnerable employees from work environments that might set off an illness, such as a SCD crisis. Because SCD trait carriers are sensitive to high altitudes, the Armed Forces required testing of all recruits before enlistment and issued a directive barring the admission of Black sickle cell carriers. Airlines grounded and discharged employees with the trait, even though pressurized cabins in airplanes alleviate symptoms (Reilly, 1977; Washington, 2006). These actions led to charges of discrimination in employment. Stigmatization quickly emerged as a major effect of the screening programs. The National Institutes of Health, hospitals and private organizations disseminated brochures and booklets equating carrier status with the disease. As a result, large numbers of Black citizens were informed they were ill and genetically tainted (Washington, 2006). Even the first sentence of the preamble to the National Sickle Cell Anemia Control Act, enacted in 1972 for the purposes of fostering sickle-cell research, screening, counseling and education, is mistaken in its citation that “Two million Americans suffer from sickle cell disease.” Here, too, Congress had confused carrier status with affected status: two million individuals carried the SCD trait while fewer than 100,000 Americans actually had the disease (Washington, 2006). The lack of understanding of the nature of genetic disorders, in general, and in the distinction between the disease and carrier states caused some states and the District of Columbia to believe that the disorder was “communicable…which posed a life threatening risk to the community” (Lappe, 1979: 101). Although the sickle cell laws held some promise of better health outcomes to the persons who were screened, these laws were essentially eugenic measures. They were designed to help reduce the number of marriages between carriers and to diminish the number of pregnancies at risk for bearing children with SCD (Reilly, 1977; Washington, 2006). The earliest research assessing the degree of confusion and misunderstanding among African Americans concerning differentiation between being a carrier of the SCD gene (heterozygote) and being affected (homozygote) or having SCD was carried out by Rutkow and Lipton in 1973 (Lappe,1979). With respect to the carrier state, the study demonstrated (N = 422) that 16 percent of the sample thought that being a carrier would affect their employment status; 14.5 percent thought it would have an adverse effect on schoolwork and 26 percent reported that carrier status would have ill effects upon participation in recreational activities. Forty-two percent of the respondents indicated changes in their future marriage plans and over half of the sample (53.3%) indicated changes in their desire for children. Fears that compulsory identification of the SCD trait were causing an increase in discrimination and stigmatization as well as handicapping the ability of citizens to contribute effectively to society resulted in campaigns in several states to repeal the legislation (Reilly, 1977).

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As the community was beginning to vocalize its criticisms of the state laws, federal Sickle Cell Anemia bills were introduced in Congress. While during the initial House debates in late 1971 only two states had enacted laws, mass media coverage of the overall controversy suggests that the Subcommittee on Health was aware of the Black and medical communities’ objections to compulsory SCD screening. Some of these criticisms were addressed within the body of the federal legislation before enactment in 1972. Specifically, the National Sickle Cell Anemia Control Act addressed four major objections: 1. The Act authorized funds for the establishment and operation of voluntary Sickle Cell Anemia screening and counseling programs; 2. Some of the program funds had to be used for educational purposes for the development and dissemination of information to the Black community and general public. 3. All programs using federal funds had to guarantee strict confidentiality of all test results, medical records and information regarding screening, counseling or treatment: and 4. Funds were made available for biomedical research and development of new technology. All states receiving federal funds for the support of Sickle Cell Anemia Screening Programs and/or research were required to follow the federal law’s guidelines. During this controversial period and just as the federal law was being enacted, the Institute of Society, Ethics and the Life Sciences published a special article in the New England Journal of Medicine (1972) proposing a comprehensive set of principles to guide screening programs. Although the Institute couched these principles in general terms for application to all screening efforts and genetic programs in health-based organizations, the article opened with a strong indictment against the state-level Sickle Cell Anemia legislation. These principles go much further than what was explicitly required in the federal law. The eleven principles posited by the Institute and which now serve as the cornerstone for all ensuing federal legislation and for most state laws are:

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Attainable Goals and Purposes: Before a program is initiated, it should be ascertained through pilot projects and other studies that the program’s goals are attainable. Program design and objectives should be evaluated continuously in light of program experience and new medical developments. Community Participation: Program planners should involve the communities affected by screening in formulating program design and objectives in administering the actual operation of the program and in evaluation. The principal value of community participation is to afford individuals knowledge of the availability and self-determination in the choice of this type of medical service. Educated community involvement is also a means of reducing the potential threat that those identified as genetically variant will be stigmatized or ostracized socially. Equal Access: Information about screening and screening facilities should be open and available to all.

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Adequate Testing Procedures: Testing procedures should be accurate and free of technical difficulties, and should provide maximal interpretation and be subject to minimum misinterpretation. Absence of Compulsion: No screening program should have policies that impose constraints on childbearing by individuals of any specific genetic composition or would stigmatize couples who, with full knowledge of genetic risks, still desire children of their own. Consequently, genetic screening programs should be conducted on a voluntary basis as there is currently no public health justification for mandatory screening for the prevention of genetic disease. Informed Consent: Screening should be conducted only with the informed consent of those tested or of the parents or legal representatives of minors. In addition to obtaining signed consent documents, it is the program’s obligation to assure that knowledgeable consent is obtained from all those screened, to design and implement informational procedures, and to review the consent procedure for its effectiveness. Screening should not focus on minors unless neonatal to avoid high risks of stigmatization. Protection of Subjects: Because most techniques for the identification of genetic composition are untried procedures and are concerned with the acquisition of new knowledge, screening should be governed by rules and regulations governing “human experimentation” according to the guidelines set forth by HEW (now DHHS) for the protection of research subjects. Access to Information: A screening program should fully and clearly disclose to the community and all persons screened its policies for informing those screened of the results of the tests performed on them. Where full disclosure is not practiced, the burden of justifying nondisclosure lies with those who withhold information. Provision of Counseling: Well-trained counselors should be readily available to provide adequate assistance. Counselors should be nondirective, with an emphasis on informing the client and not making decisions. Understandable Relationship to Therapy: As part of the educational process that precedes the actual testing program. The nature and cost of available therapies or maintenance programs for affected offspring, combined with an understandable description of their possible benefits and risks, should be given to all persons screened. Acceptance of participation in research should not be a precondition for participation in screening nor should acceptance of screening be construed as tacit acceptance of such research. Protect Right of Privacy: Well-formulated procedures should be set up in advance of actual screening to protect the rights of privacy of individuals and their families. Policies should guarantee release of information to only the person to be screened or, with the person’s permission, a designated physician or medical facility. Records should be kept in code, prohibiting storage of non-coded information in databanks where telephone computer access is possible. Private and public access should be limited only to anonymous data to be used for statistical purposes (Lappe, 1979)

These principles were formally incorporated into model legislation at the annual Council of State Governments conference in Seattle in 1973. The requirements for federal funding and acceptance of these principles resulted in the repeal and/or amendment of most laws in the

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states and the District of Columbia. States which were in the process of enacting Sickle Cell Laws amended proposed bills to meet the specifications. Other states have never passed any laws regarding SCD but appropriated funds for screening programs without explicit legislative authority. Today, few SCD community screening programs are in operation. The demonstration in 1986 that prophylactic penicillin markedly reduces the incidence of pneumococcal sepsis provided a powerful incentive for the widespread implementation of neonatal screening for sickle cell disease (Lane, 2001). Subsequent experience demonstrated that neonatal screening, when linked to timely diagnostic testing, parental education, and comprehensive care, markedly reduces morbidity and mortality from sickle cell disease in infancy and early childhood. Today, every state and the District of Columbia include SCD and other hemoglobinopathies in their Newborn Screening Programs. In addition, most states have established SCD Treatment Centers that provide on-going care to affected infants and children and their families. Thus, the principle of beneficence can be achieved in the broadest and most equitable fashion possible. Of equal importance and as will be discussed in the next section, the eleven principles described above serve as the foundation for on-going research and treatment practices.

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ATTITUDES AND KNOWLEDGE: IMPLICATIONS FOR THE HEALTH OF AFRICAN AMERICAN WOMEN Rarely does a day pass without a report in the media about a new medical breakthrough in the field of genetics or the development of a life-saving genetic-related pharmaceutical. A great number of these advances arise from the complete categorization of the Human Genome which has resulted in greater understanding of our genetic make-up. Because we share 99 percent of our genetic code with each other, race has proven not to be a valid means for differentiation. Yet, genetic variations clearly exist between individuals and between people from different biogeographical origins. These differences are likely to be due to some genes being “turned on,” in some people and not in others. In addition, some genes tend to develop mutations which alter body functioning or physical appearance, and these mutations are passed on to children (Spice, 2002). Often, however, these variations do not occur consistently along racial lines, but have occurred due to evolutionary adaptation, e.g., skin color and exposure to light. We also often hear reports that African American women are genetically more prone to breast cancer, hypertension, diabetes, and some carry a gene that makes their children more at risk of organic brain damage if exposed to alcohol during pregnancy. Why, then, if we are 99 percent alike, are these risks higher for African American women? Generally, researchers investigating specific disorders more commonly found in certain populations are looking for genes that have a greater propensity to mutate. Referred to as polymorphisms, these altered genes may provide, as in the case of SCD and malaria, added protection. In other instances, as in the case of some breast cancers, these genes are associated with a greater vulnerability to certain diseases. However, as is demonstrated in the following discussion of breast cancer, genetic inheritance, life-style and environmental risk factors interact closely in disease expression.

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The mortality rates of women due to breast cancer are disproportionately high among African American women. While the incidence of breast cancer among African American women (95/100,000) is slightly lower than it is for White women (112/100,000), African Americans have the highest breast cancer death rates of all racial and ethnic groups (34/100,000) (National Cancer Institute, 2001). The five-year survival rate for breast cancer among African American women is 75 percent compared to 89 percent among White women. Among pre-menopausal cohorts ages 35 – 44, African American women have a breast cancer death rate more than twice the rate of White women in the same age group: 22.0 deaths per 100,000 as compared to 10.7 deaths per 100,000 respectively (USDHHS, 2005). At the 2008 Annual Meeting of the American Association for Cancer Research, investigators from the Windber Research Institute reported that they had identified 65 genes that showed differential expression between African American women and Caucasian women. Of these, 28 genes were found to be more highly expressed in African American women and 37 genes had lower expression. The researchers concluded “in addition to the socioeconomic and health care factors that have been found to play a role in breast cancer outcomes, there may also be molecular differences that contribute to the more aggressive clinical features of breast tumors in African American women, compared with Caucasian women (Field, 2008). Identification of these slight genetic variations is important but is only a part of the story. Breast cancer, as is true for many other diseases that are thought to have genetic predisposition, is influenced by multifactorial risk factors (Lea et al, 2002). A risk factor is anything that increases the chances of getting a disease, with different risk factors associated with different disorders. While the risk factors associated with breast cancer are not the same for all women, some may contribute more to women’s chances of developing the disease: • •

• •

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• •

Age – The risk of developing breast cancer increases with age Family history of breast cancer – Having one first-degree relative (mother, sister or daughter) with breast cancer almost doubles a woman’s risk of developing the disease Gender – Being a woman is the main risk factor for developing breast cancer and is more than 100 times more common than breast cancer in men Genetic risk factors – Mutations in certain genes, such as those in the breast cancer genes BRCA1 and BRCA2, increase some women’s risk Personal history of breast cancer – A woman with cancer in one breast has a 3 to 4 fold increased risk of developing a new cancer in the other breast Previous breast radiation – Women who, at an earlier age, had radiation therapy to the chest area as treatment for another cancer, such as Hodgkin’s disease, have a significantly increased risk for breast cancer

These risk factors are constant in so far as they cannot be changed. Life-style risk factors, on the other hand, are not immutable and can be modified: •

Nutrition – There are various factors involved with cancer and diet, including age when weight gain occurred, excess fat in the waist or hips, type of diet and intake of saturated and polysaturated fats. Saturated and polysaturated fats are commonly found in foods such as beef, poultry, and dairy products made from whole and 2

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percent milk They are also found in cocoa butter, coconut, and the “tropical oils” that include coconut, pail and palm kernel. These foods also contain high levels of dietary cholesterol. Although contradictory research results have been found with respect to breast cancer, a healthy diet and physical activity help lower the risk of other diseases such as heart disease, high blood pressure and diabetes Alcohol – Alcohol use is linked to a slightly increased risk of developing breast cancer. Compared with nondrinkers, women who consume 2 to 5 drinks daily have an estimated 1.5 times greater risk Not having children – Women who have not had children or who have their first child after age 30 manifest a slightly higher breast cancer risk Hormone replacement therapy – Long-term use of hormone replacement therapy (HRT) after menopause, particularly estrogens and progesterone combined, increase the risk of breast cancer. Breastfeeding – Breastfeeding may slightly lower the risk, but some studies have found no impact on breast cancer risk Smoking – To date, no studies have definitely linked cigarette smoking to breast cancer. However, smoking affects overall health and increases the risk for many other cancers and heart disease (adapted from the USDHHS, Breast Cancer Resource Guide for Minority Women, 2005).

Currently, the pathways and effects of the life style risk factors have not been wellestablished and it is not known if particular biogeographical groups are at greater risks for specific factors due to genetic predisposition. Scientific inquiry is underway to investigate possible associations, particularly in instances where there are known or suspected genetic mutations, such as BRCA1. This mutation has been associated with a higher incidence of breast cancer in African American women. While less is yet known about the incidence and mechanisms associated with environmental factors, these also play a role in gene expression and mutation as well as impacting upon the risks related to breast and other cancers. Environmental risk factors include external influences, such as delay in seeking health care or home and occupational exposures to toxins, and internalized influences, such as prolonged psychological and physiological stress from perceived racial discrimination. In addition, socioeconomic factors are strongly associated to environmental risk factors with an inverse correlation: the lower the socioeconomic status, the higher the body burden of environmental toxins. As a result, African American women who grew up in or who now reside in poor rural areas or in deteriorating inner cities have higher body burden levels of chemicals and metals, such as PCBs, mercury, lead, dioxin and phthalates, than their Whites or Latinos cohorts. Genetic researchers do acknowledge that genes and environmental factors interact and that each is likely to influence the effects of the other (Panguluri et al., 1999). For example, African American women who have the BRCA1 genetic mutation may be at higher risk of developing a more aggressive form of breast cancer due to exposure to an environmental toxin. Because so many of these toxicants are carcinogenic, improved biomonitoring should provide important information about differences in exposures that should be considered when investigating the causes and severity of cancers. Disaggregation of the multifactorial variables that result in the expression of cancers is likely to remain the focus of future research.

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While access to health care and early detection, combined with other social influences, are important factors in the drive to reduce the incidence of breast cancer among African American women, improvement in these areas seem to be only part of the solution. Research has found that even among women in a managed care population who had access to health care, African American women sought diagnosis and treatment at more advanced stages of their breast cancer than other groups (Duncan, 2001). A similar finding resulted among women treated in US military health care facilities, all of whom had equal access to health care and treatment options. Access to health care and treatment options decreased the mortality rate for African American female military beneficiaries (24.77%) as compared to other African American women (34.2%). However, equal access to health care and treatment options did not result in significant differences in mortality rates between African American women (24.77%) and European-descent female military beneficiaries (18.08%) (Duncan, 2001). Critical socio-environmental factors may influence when African American women seek health care and treatment for breast cancer. A study on the perceptions of African American women regarding their vulnerability for getting breast cancer found: •



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Health information about breast cancer was confusing. African American women tended to overestimate the role of genes and underestimate the role of personal behavior in the development of breast cancer at earlier ages. Because of the confusing health messages, African American women believed they had little or no control over their genetic predisposition and susceptibility to the disease. As a result, they depreciated the effects of life-style behaviors. Distrust of the health care system because of historic injustices and inadequacies, and compounded by a strong belief in God, was associated with not feeling an imperative need to seek medical care (Duncan, 2001).

Lack of understanding about genetics, reinforced by longstanding health disparities, has resulted in reluctance by African Americans to participate in genetic screening and research. A national survey of attitudes about genetic testing demonstrated that African Americans evinced significantly greater concerns about the negative consequences of genetic testing than did their White counterparts (Furr, 2002). In addition, about 15% of the African American women recruited from urban health care facilities believed that genetic testing would be used to show that their ethnic group is inferior, a belief not expressed by White women (Thompson et al., 2003). However, in instances where the health message has been clear and consistent for a long period of time, and in circumstances in which they did not perceive themselves to be chosen indiscriminately as the study subjects, African Americans have been willing to participate in the research. Thus, in a study of attitudes towards genetics and smoking, respondents who believed that there were greater benefits to participating in the medical research were most likely to state a willingness to participate in the research (Halbert et al., 2006). Further, African American women have been less likely to obtain treatment following breast cancer surgery. The lack of a system for referring surgeons to keep track of their patients to encourage follow-up care was identified as one variable that might explain this discrepancy with White women. Mount Sinai School of Medicine established a tracking and feedback registry as an intervention to determine if follow-up rates improved. Surgeons at six

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medical centers were notified as to whether their patients subsequently visited an oncologist. This intervention resulted in an increase in oncology consultations and a decrease in underutilization of follow-up treatment and may serve as a model for other areas of health care (Bickwell, 2008). The work to minimize and eliminate barriers associated with African Americans and other minorities to access and utilize genetic services are underway. As a first step to addressing these barriers, the March of Dimes (MOD) has designed The GENE Project, a 5year cooperative agreement with Maternal and Child Health Bureau of the Health Resources and Services Administration (HRSA). This multifaceted project includes developing community-based participatory strategies to improve consumer access to culturally appropriate genetics information, resources and services. Funds from the MOD have been used to support numerous community agencies who are working to establish collaborative networks that focus on outreach to diverse, underserved and underrepresented communities with respect to genetic issues (March of Dimes, 2008). In addition, the United States Department of Health and Human Services Secretary’s Advisory Committee on Genetic Testing has held town meetings to obtain information from community leaders about disparities in accessing genetic services and recommendations as the best means to eliminate these barriers in health care. Fears of racial discrimination are beginning to be voiced in the fields of genomic medicine and pharmacogenetics with contradictory concerns emerging. On one hand, it is clear that more and improved research is needed into medical procedures and pharmaceuticals that are proven to be efficacious for African Americans. The obverse side is the discomfort of targeting a specific group of common biogeographical origin for fears of racial profiling (Washington, 2006). Some bioethicists have suggested that this issue may be avoided by the development of individually tailored medicines and treatment rather than on procedures and pharmaceuticals that are effective for the entire population. While genomic medicine and pharmacogenetics are slowly moving in individualized direction, the prohibitive costs are likely to make this an unrealistic solution in the near future (Fitzgerald and Royal, 2007). Future research needs “to identify genotypic and phenotypic characteristics that transcend racial or ethnic categories to identify a population…in which there is an increased likelihood of a favorable response to such therapy” (Fitzgerald and Royal, 2007, P. 145). While not specifically oriented towards protecting African Americans, recent legislation does afford greater protection in health care and medical research. Drawing upon the eleven principles described in Section 2, these laws address genetic discrimination with respect to insurance, employment, and privacy. Genetic discrimination refers to the differential treatment of individuals or their relatives based on their actual or presumed genetic differences as distinguished from discrimination based on having symptoms of a geneticbased disease (Geller, et al, 1996). Genetic discrimination is aimed at people who appear healthy or whose symptoms are so mild that their functioning and health are not affected, e.g., as described for carriers of the SCD trait. One of the most common forms of discrimination is denial of health insurance based on a person’s genes. Insurance companies routinely gather and use medical information to predict a person’s risk of illness and death. “Risk” information is used to determine which individuals and groups will be insured and at what price and this information plays a critical role for people in determining access to health care. As a result, insurance companies may deny health, life, disability and other forms of insurance to people with abnormal genes if there is a

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sound basis for determining risks consistent with law. The Genetic Information Nondiscrimination Act of 2008 (GINA), which amends the Employee Retirement and Income Security Act (ERISA), prohibits group health plans from requesting or requiring an individual or family member of an individual to undergo genetic test. The law also prevents reference to genetic information for underwriting purposes, e.g., premiums based on pre-existing conditions, or using genetic information from a fetus or embryo. These terms also apply to federal governmental health plans, including Medicaid and Medicare. Employment is another area with reported cases of genetic discrimination. Genetic tests are available today for more than 1,000 diseases and this information can be used to identify and manage risks of developing specific medical conditions before those conditions manifest themselves. Such information has been of value to employers desiring to know whether an employee or candidate may be genetically inclined to ailments like carpel-tunnel syndrome or long-term illness from exposure to workplace toxins. GINA explicitly states that employers cannot use genetic information with respect to hiring or discharging employees and defines such use as discrimination. Privacy and confidentiality of genetic information pose difficult challenges for individuals and practitioners. While the sensitive nature of the information seems to demand that individual privacy is respected, conflicts have arisen with respect to who owns and controls the information, as to whom has access to the data, how the information is interpreted and used, and how persons can be protected from harm that might result from improper disclosure. GINA prohibits health insurance plans and employers from sharing genetic information. It further compels these entities to treat genetic information in their possession as “health information,” as defined under HIPAA and the rules governing “confidential medical records” under the Americans with Disabilities Act (ADA) (Rybacki, 2007). In conclusion, the decoding of the human genome gives rise to much hope for being able to detect genetic predisposition and susceptibility to many diseases much earlier and with more specificity and thus to being able to prevent, find the cure, or utilize effective genetic therapies for many diseases. These hopes engender new dimensions to our perceptions of privacy, informed individual choice, shared decision-making and the right to selfdetermination. However, as we reach these new frontiers, it is important that we retain a degree of caution in how our genetic inheritance is interpreted and how the information is used. In his opening remarks at the Nuremberg Doctors’ Trial on December 9, 1946, Chief U.S. Prosecutor Robert Jackson stated, “The wrongs which we seek to condemn and punish have been so calculated, so malignant and so devastating that civilization cannot tolerate their being ignored because it cannot survive their being repeated.” Social, health and legal disparities for African Americans have been a plague upon the landscape of America for centuries. However, these circumstances seem to be ameliorating as an increasing number of White Americans become more conscious of and acknowledge these historic abuses. Questions still remain as to whether African American women are genetically more prone to breast cancer, hypertension, diabetes or to carrying a gene that places their children at higher risk of sustaining organic brain damage if exposed to alcohol during pregnancy. African Americans should remain vigilant about the purpose of genetic research and their participation in it so that exploitation and maltreatment cannot occur nor can unethical medical and genetic research be practiced upon them. Moreover, if African American women

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are going to contribute to resolving health disparities with respect to access, quality of care, mortality and morbidity, and other variables, like all Americans, they need to be informed of their genetic inheritance and predisposition, life-style and behavioral risk factors, and the importance of participating in well-designed and protected research.

AUTHOR’S NOTE

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Twenty-five years ago I was working on my doctoral dissertation on Tay-Sachs Disease, a recessive genetic disorder most commonly found among Askenazi or Eastern European Jews, which is my biogeographic genetic and religious heritage. It was at this time that I first studied the social context in which community efforts and legislative initiatives associated with screening for congenital anomalies, including Sickle Cell Disease (SCD), took place. As genetic screening was a relatively new concept at the time, few scholars had studied the issue broadly. Philip Reilly, an attorney and physician with a specialty in genetics and a great interest in public policy, was one of the few who examined community-based screening programs, the legislative initiatives that were undertaken, and raised some of the bioethical and discriminatory practices that emerged in the 1970s and remain relevant today. While reviewing the literature in preparation for writing this chapter, I again read Reilly’s work along with others, many of whom are African American, regarding SCD and other genetic issues that impact the health of African American women (and the Black population as a whole.). What struck me deeply was the chasm between the perspectives of a White physician and that of African American physicians and scholars. The broad differences in perspective made it difficult for me to write this chapter. As I studied in great depth the horrific injustices and abuses that were forced upon African Americans, I was challenged to look more closely at my own personal values and ethics. While much of the historic maltreatment is well-documented, the degree of racial discrimination in contemporary medicine, and in genetics in particular, is less clear to me. Both Reilly and African American accounts of the SCD screening experience, and, perhaps, more recently with respect to Anthrax in 2001, are true and valid. However, their differences underscore the deep distrust with which Blacks look upon White medicine. For me, the truth of these two perspectives lies somewhere in between. I thank this book’s editor, Dr. Yvonne Wesley, for encouraging me to open this chapter by discussing the personal struggles I encountered while writing it.

REFERENCES Bamshad, M; Wooding, S; Salisbury, BA; and Stephens, JC. (2004). Deconstructing the relationship between genetics and race. Nature Reviews Genetics, 5, 598-609. Bickwell, N. (2008). A tracking and feedback registry to reduce disparities in breast cancer care. Medical News Today: Abstract 3836. Duncan, VJ. (2001). African American women’s perceptions of the role of genetics in breast cancer risk. American Journal of Health Studies,.

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Field, L. (2008). Gene expression differences in primary breast tumors from African American and Caucasian women. Medical News Today: Abstract 555. Fitzgerald, K and Royal, C. (2007). Race, genetics and ethics. In:Prograis Jr., LR and Pellegrino, ED. African American bioethics: Culture, race and identity. Wahington, DC: Georgetown University Press. Furr, LA. (2002). Perceptions of genetics research as harmful to society: Differences among samples of African Americans and European-Americans. Genetic Test, 6,25-30. Geller, LN. Alper JS, Billings PR, Barash CI, Beckwith J and Natowicz MR. (2003). Individual, family, and societal dimensions of genetic discrimination: A case study Analysis. Sci. Eng. Ethics, 1996:2:71-88. Reprinted in The double-edged helix: Social implications of genetics in a diverse society. The Johns Hopkins University Press, Baltimore, MD; 2003. Genetic Information Nondiscrimination Act of 2008. Halbert, CH, Gandy Jr, OH, Collier, A, and Shaker, L. (2006). Intentions to participate in genetics research among African American smokers. Cancer epidemiology, biomarkers and prevention, 15,150-153. Haller, M. (1963). Eugenics: Hereditarian attitudes in American thought. New Jersey: Rutgers University Press. Howard, T and Rifkin, J. (1977). Who should play god? New York: Delacorte Press. Jessup, JM, Menck, HR, Winchester, DP, Hundahl, SA and Murphy, GP. (1996). The national cancer data base report on patterns of hospital reporting. Cancer, 78, 1829-1837. Lane, PA. (2001). Colorado Sickle Cell Treatment and Research Center Website. University of Colorado Health Sciences Center. Lappe, M. (1979). Genetic politics: The limits of biological control. New York: Simon and Shuster. Lea, DH, Calzone, K, Masny, A and Bush, A. (2002) Genetics and cancer care: A guide for oncology nurses. Pittsburgh: Oncology Nursing Society. Lea, DH, Williams, J, and Donahue, MP. (2005). Ethical issues in genetic testing. Journal of Midwifery and Women’s Health. 50(3),234-240. McCormack, MK. (2005). Advances in Genetics and their Impact on Prevention of Mental Retardation and Developmental Disabilities. In: Cohen, DE. Changes and challenges: Securing our children’s future. Trenton, New Jersey: Department of Human Services, Office for Prevention of Mental Retardation and Developmental Disabilities; 19-24. March of Dimes. (2008). The GENE Project fact sheet. NationMaster Encylopedia: http://www.nationmaster.com/encyclopedia/Recessivegene#Autosomal_recessive_gene. Panguluri, RCK, Brody, LC, Modali, R, Utley, K, Adams-Campbell, L, Day, AA, WhitfieldBroome, C, and Dunston, GM. (1999). BRCA1 mutations in African Americans. Human Genetics 105, 28-31. Pograis Jr, L. and Pellegrino, ED. (2007). African American bioethics: Culture, race and identity. Washington, DC: Georgetown University Press. Reilly, P. (1977). Genetics, law, and social policy. Cambridge, MA: Harvard University Press. Rutkow, IM and Lipton, JM. (1974). Some negative aspects of sickle cell anemia screening programs. Conn. med. 38,257-262.

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Rybacki, TA. (2007). Collecting genetic information on your employees? Significant changes are on the way. Work Place Counsel. Littler Mendelson Law Firm. Thompson, HS, Valdimarsdottire, HB, Jandorf, L, Redd, W. (2003). Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: Differences across African American, Latina and Caucasian women. Patient Education Counseling; 51,217-227. US Department of Health and Human Services, Office of Public Health and Science, Office of Minority Health Resource Center. (2005). Breast cancer resource guide for minority women. Washington, DC. Washington, HA. (2006). Medical apartheid: The dark history of medical experimentation on Black Americans from colonial times to the present. New York: Doubleday.

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Chapter 3

ISSUES AFFECTING HEALTH CARE OF AFRICAN AMERICAN WOMEN WITH DISABILITIES Suzanne C. Smeltzer∗ Center for Nursing Research Villanova University College of Nursing 800 Lancaster Avenue, Villanova, PA 19085

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ABSTRACT This chapter addresses health care and health promotion in African-American women with disabilities. Multiple research studies have demonstrated that women with disabilities receive health care, including primary health care and preventive health screening, that is less aggressive than women without disabilities. To date, few of the readily available studies that have addressed this issue have specifically targeted AfricanAmerican women with disabilities. This chapter will examine the body of research related to health care and health promotion in women with disabilities in general and that of African-American women with disabilities in particular. The inclusion and exclusion of African-American women in published studies will be examined. The social context related to the health and health care of this population will be examined as related to inclusion and exclusion of African-American women with disabilities in studies along with identifying any unique societal and health-related aspects that affect AfricanAmerican women with disabilities. Recommendations are provided for research and for social policy.

INTRODUCTION Glenn (1995) and others (Alston and McCowan, 1994) have stated simply and accurately: African American women with disabilities experience "triple jeopardy" as a result of discrimination because of race, gender, and disability. While race, gender, and disability have each been investigated and dissected as causes of health disparities, the intersection of these ∗

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three characteristics has not received adequate attention given their combined impact on health and health care. Issues concerning African American women with disabilities have largely been neglected despite the fact that women have more disabilities than men and African American women have a disproportionately higher rate of disability than Caucasian women (U.S. Census Bureau, 2006). Although the rate of disabilities among African American women is high compared to many other groups, few studies have focused on health care of African American women with disabilities and as a result relatively little is known about the health disparities that they face. Writing in 2003 about discrimination of African American women with disabilities on the basis of gender, ethnicity, and disability, Banks (2003) reported that she was unable to locate resources that directly address levels of disability, financial support, education or employment of this group of women. She concluded that much more research is needed to identify the multiple concerns of African American women with disabilities. Despite the paucity of research on African American women with disabilities, those relatively few studies that have focused on this group of women suggest that they experience significant hardship because of higher rates of unemployment, lower average level of education, and lower likelihood of receiving appropriate health care compared to African American women without disabilities and non-African American men and women (Nabors and Pettee, 2003). The lack of research on African American women with disabilities has hampered the development of strategies effective in addressing health issues of this population and the development of models of health, illness, and disability among African American women with disabilities (Feldman and Tegart, 2003). Another consequence is the lack of knowledge and understanding about the perspectives of African American women with disabilities; in fact, their voices are rarely heard and infrequently considered.

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PREVALENCE OF DISABILITY IN AFRICAN AMERICAN WOMEN African Americans comprise a substantial proportion of people with disabilities and more than half of them are women. It is estimated that 49.7 million Americans residing in the community have long-lasting disabling conditions or impairments; it is further estimated that 16.8 million of them are ethnic and racial minorities. Although African Americans represent 12.4% of the population, they account for 33.8% of people with disabilities (U.S. Census Bureau, 2006). The following statistics (Walker, Saravanabhaven and Asbury, 1996) reveal the depth and breadth of the issues facing African American men and women with disabilities: •





African Americans represent a large segment of the population with disabilities and are overrepresented in the population of persons with disabilities in their proportion to the total population. African Americans have a slightly higher overall disability rate than other populations. Of the estimated 13.4 million working age adults with disabilities, approximately 2.5 million, or 18% to 21% are African American Approximately 24.2% or 18 million, of the working-age population with a severe disability are African Americans

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African Americans account for 22% of persons with a disability who are unemployed African Americans are underrepresented among persons with a disability who participate in the work force, accounting for only 12.9 % of individuals with a disability who are working 41% of African Americans with a disability live at or below the poverty line The percentage of African American women with severe disabilities is far higher than the percentage of males

Other statistics indicate that the rates of disability in African Americans 16 to 64 years of age and those 65 and older are 26.4% and 52.8%, respectively. By comparison, the rates of disability in Caucasians in these two age groups are 16.8% and 40.6%, respectively (U.S. Census Bureau, 2006). African American women with disabilities have been identified as one of the most disadvantaged groups in America because they are women, because they have a disability and because they are African American (Alston and McCowan, 1994; Alston and McCowan, 1995). The presence of a disability increases the likelihood of specific barriers to everyday functioning for African American women and their ability to obtain quality health care. These data indicate that African American women are more likely than Caucasian women to be disabled, more likely to have severe disabilities, more likely to be unemployed and more likely to live at or below the poverty line. A likely consequence of these differences is that African American women with disabilities are less likely to have access to health care and screening than Caucasian women with or without disabilities. Little concrete data, however, are available about health access of African American women with disabilities because of the paucity of studies that have examined this issue. It has been suggested that the higher rate of disability in African-American women is a result of the early onset of chronic disease among African American women. The rate of disability at age 35 in African American women has been described as comparable to that of Caucasian women at age 55. Further, disability rates of 55-year-old African American women approach the national average for 75-year-old Caucasian women. The early deterioration in health of African American women, which can be viewed as the result of the cumulative impact of repeated experience with social, economic, or political exclusion, inadequate resources, and being ethnically marginalized or economically disadvantaged, has been identified as a factor in the higher rate of disabilities (Geronimus, 2001). Of importance are differences in increased risk of disability with aging. Researchers reported the results of a recent study using a national probability sample of community-dwelling people 65 years of age and older using data from the Health and Retirement Study. The results indicated that older African Americans (and Latinos interviewed in Spanish) were at higher risk for developing disability compared to older Caucasians (Dunlop, Song, Manheim, Davigius, and Chang, 2007).

DEFINITION OF DISABILITY A definition of disability as used in this chapter is important for understanding the disability-related issues that affect African American women and their health. A number of definitions have been used over the years for legal, social and political purposes. Despite the

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diversity of definitions, the underlying and widely accepted definition identifies disability as a limitation in a major activity. For over two decades, the definition of the World Health Organization (WHO) viewed disability as a limitation in a person's abilities (e.g., mobility, personal care, communication, behavior); impairment as an alteration in body systems (e.g., neurological, respiratory, urologic); and handicap as the disadvantages experienced by people in their environment (e.g., in the workplace, economic sufficiency, and independence) (WHO, 1980). In 2001, WHO revised its definitions and changed the focus from that of disease to that of health. WHO considers disability to be an umbrella term for impairments, activity limitations, participation restrictions, and environmental factors. Impairment is seen as a loss or abnormality in body structure or physiological functions, including mental functions. A person's functioning or disability is viewed as a dynamic interaction between health conditions (i.e., diseases, disorders, injuries, trauma, etc.) and contextual factors (i.e., personal and environmental factors) (WHO, 2001; Lollar and Crews, 2003). Despite the effort to develop consensus on a definition, there remain variations in definitions and lack of consensus about what disability is. However, disability can be considered a multifaceted, complex experience that is integrated into the lives of persons with disabilities. The degree to which that integration occurs is influenced by the effects of the disabling condition, others' perceptions of disability, and the need for, access to and use of resources by the person with a disability (Lutz and Bowers, 2005). Disability can be mild without major effects on one’s life or it can be severe, resulting in the need for round-theclock assistance and use of equipment to breathe and to survive. Disabilities can be visible to others because of use of mobility aids or assistive devices (e.g., canes, walker, crutches, wheelchair), or changes in appearance (e.g., loss of visible body parts) or behaviour (e.g., altered gait, scanning eye movements). Alternatively, they may be invisible to others (e.g., disability due to cardiac disease; fatigue syndromes) although very incapacitating. Although federal legislation has been enacted to make public facilities, including health care facilities, accessible to people with disabilities, the effects of this legislation fell far short of its intended outcomes. This legislation includes the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA) of 1990. More recently, the Olmstead decision of 1999 and New Freedom Initiative of 2001 were enacted to further address these issues. Despite these efforts, men and women with disabilities have continued to report barriers to care (United States Public Health Service [USPHS], 2005). In September, 2008, the ADA Amendments Act was passed unanimously by the U.S. Senate with the goal of restoring the intent and protections of the Americans with Disabilities Act of 1990. This Act was proposed in response to the 2003 interpretation by the Supreme Court that excluded certain people from coverage afforded by the ADA. Because of the continuing limitations in access to health care among people with disabilities, the U.S. Surgeon General's office issued a call to action in 2005 to bring attention to these issues and to improve the health and wellness of persons with disabilities (USPHS, 2005; Smeltzer, 2007; Iezzoni, 2006). Eliminating health disparities was one of the two overarching goals identified in Healthy People 2010 (USPHS, 2000) because of the continuing health disparities affecting access to health care among minority groups. Healthy People 2010 specifically identified elimination of health disparities among minority groups with disabilities as one of its goals for the first time. The Disability and Health Team of the Centers for Disease Control and Prevention (CDC) (2006a; 2006b) has promoted the health and well-being of various populations with disabilities, including ethnic and racial minorities, by supporting public health research,

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partnerships, education, and policy. This chapter will not focus on specific types of disabling conditions or disorders; rather, it will focus on the disparities that specifically affect primary health care, preventive health screening, and other health promotion efforts in African American women with disabilities.

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HEALTH DISPARITIES Health disparities have the potential to affect African American women with disabilities because of the intersection and combined effect of race, gender and disability. There is considerable information about race-based, gender-based and disability-based health disparities, but little information on the combined effect of these health disparities. Race-based Health Disparities. It is a well established fact that people from minority groups are affected by inequities across the spectrum of medical conditions and inequities in health care related to quality and access (Institute of Medicine [IOM], 2002). The health care that is received by African Americans is generally acknowledged to be of poorer quality than that provided to Caucasians. Such disparities occur in preventive care, treatment of acute conditions, and management of chronic diseases; across many health care settings (e.g., primary care, home health care, hospice care, emergency departments, hospitals, and nursing homes); and across a variety of clinical conditions (e.g., cancer, diabetes, end-stage renal disease, heart disease, HIV disease, mental health and substance abuse, and respiratory diseases). These disparities relate to effectiveness of management, patient safety, timeliness of diagnosis and treatment, and patient centeredness. Data suggest that many of these health care disparities are increasing rather than decreasing over time (Agency for Healthcare Research and Quality [AHRQ], 2008). Recent studies and reports that examined disparities in mortality across races and counties, and races by counties across the United States confirmed that health inequalities are large and show few sign of decreasing (Murray, Kulkarni, Michaud, Tomijima, Bulzacchelli, et al., 2006; Henry J. Kaiser Family Foundation [HJKFF], 2007). African Americans with cancer have a higher death rate and shorter length of survival than any other racial and ethnic group in the United States. Despite improvements over the last decade, the 2003 death rate for all cancers combined was 35% higher in African American men and 18% higher in African American women than in Caucasian men and women. The causes of these differences have been attributed to factors such as socioeconomic disparities, economic and social barriers to high quality cancer prevention, early detection and treatment, and the impact of racial discrimination on all these factors. Physical or genetic factors due to race or ethnicity are thought to play a very minor role in the differences (American Cancer Society, 2007). Several specific examples clearly illustrate these differences and the health disparities that affect African Americans. Breast cancer tends to be diagnosed at a later stage with a higher grade and greater tumor size; this results in greater mortality than other groups of women. Further, the risk for breast cancer is higher in African American women under 45 years of age than that for Caucasian women from the same age cohort (Bowen, Hickman and Powers, 1997). African American women are less likely than Caucasian women to receive breast cancer screening, a disparity that is due at least in part to socioeconomic factors

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(Schneider, Zaslavsky, and Epstein, 2002). African American women with abnormal results on mammography or clinical breast exams are half as likely as other women to undergo follow-up tests results. Further, delays of 3 to 6 months have been associated with lower survival rates compared with women who have shorter delays. Treatment of breast cancer also differs in African American and Caucasian women with African American women more likely to undergo mastectomy rather than breast-conserving surgery and radiation. When African American women do receive breast-conserving surgery, they are less likely than Caucasian women to have radiotherapy (AHRQ, 2006; HJKFF, 2002). The incidence of both diabetes and obesity are higher in African American women than Caucasian women. Diabetes, just one of many consequences of obesity, affects one in four African American women by the time they reach the age of 55 years. African Americans are almost twice as likely to have diabetes as Caucasians of the same age. In another example, African American women in studies of rheumatoid arthritis had poorer outcomes on measures of disability, pain and global health status than Caucasians (Bruce, Fries, and Murtagh, 2007; Iren, Walker, Hochman and Brasington, 2005). These findings have been supported by those of other studies that have identified disparities in health care provided to African American and other minority patients receiving acute and rehabilitation care following trauma (Shafi, de la Plata, Diaz-Arrastia, Bransky, Frankel, Elliott et al., 2007). Further illustrating racial disparities is the difference in rates of postoperative complications, with higher incidences of such complications in African American Medicare patients than Caucasians (AHRQ, 2008). Related to health screening, African American women are much less likely than Caucasian women to undergo bone mineral density testing or to receive treatment for the diagnosis and management of osteoporosis. This finding persists even among those who had a previous fracture (Mudano, Casebeer, Patino, Allison, Weissman et al., 2003). A variety of factors have been suggested as possible causes of these differences in morbidity and mortality and their diagnosis and treatment in African American women. These include genetic predisposition to specific diseases, lower overall socioeconomic status, urbanization with its associated lifestyle and stress levels, delay in diagnosis, nature of diet, sedentary lifestyle and less access to health care services (McNabb, Quinn and Tobian, 1997). Most of these factors are potentially modifiable. The landmark IOM Report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (2002), identified a number of factors that may contribute to health disparities affecting African Americans. These include cultural or linguistic barriers, fragmentation of health care systems, incentives for health care providers to contain costs by limiting services, and sites in which health care is delivered (sites other than private physicians’ offices). The characteristics of the clinical encounter comprise another set of factors contributing to health disparities in African Americans. These include bias, prejudices and stereotyping against minorities on the part of health care providers based on their views about minorities. According to the IOM, even well-intentioned Caucasians who are not overtly biased are often reported to have negative racial attitudes and stereotypes. Negative attitudes and stereotypes on the part of the predominantly Caucasian health care community may include views that members of minority groups are less intelligent, more prone to violence, and prefer welfare over work. These negative attitudes and stereotypes may be unrecognized by Caucasian health care providers, but they nevertheless affect health care encounters with African American patients. Negative encounters with the health care system

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or perceptions on the part of African American patients that their health care providers have negative attitudes toward them are likely to result in distrust and reluctance on the part of patients to comply with recommendations for health screening, diagnostic testing or treatment. Gender-based Health Disparities. It is clearly recognized that women’s health has suffered because of gender-based disparities in health care related to diagnostic testing, treatment and follow-up care. Women receive care that is different from, less aggressive than, and inferior to care provided to men. Until relatively recently, women were uniformly excluded from health-related studies because of their reproductive potential or the theoretical impact of their hormonal status on results of clinical drug trials. Despite their exclusion from such studies, women’s health problems have been treated using medications and other therapies that were never tested in women. Researchers have only recently clearly identified some of the diagnostic and treatment needs of women with heart disease. Women with cardiac disease continue to be less likely to receive proper management including recommended drug therapies known to be effective in reducing the risk of coronary heart disease. They also are less likely than men to undergo tests that are used in the diagnosis of coronary heart disease. Women with atherosclerosis and high cholesterol are less likely than men to receive treatment for their management (Persell, Maviglia, Bates, and Ayanian, 2005). Half of all women who experience a first heart attack have pre-existing heart disease that was undiagnosed despite cardiac risk factors, such as high blood pressure, obesity, and diabetes; these issues have not been adequately treated, resulting in lost opportunities to prevent heart attacks in women (Yawn, Wollan, Jacobsen, Fryer and Roger, 2004). While women with hypertension have been treated with antihypertensive medications, only a portion of them are treated with the same aggressive drug therapy prescribed for men with high cholesterol or lipid levels (Kim, Hofer, and Kerr, 2003). Clearly, there are significant differences in cardiovascular care from prevention to treatment and follow-up received by men and women. Although cardiac disease causes more than 250,000 deaths in women each year, much of the research in the last 20 years has either excluded women or included few women. Regardless of insurance status, women are less likely than men to receive aspirin, beta-blockers, ACE inhibitors, intravenous heparin, or nitrate therapies within the first 24 hours of hospital admission for cardiac disease and much less likely than men to undergo coronary angiography, angioplasty, or coronary bypass surgery (Canto, Rogers, Chandra, French, Barron, et al., 2002). In the area of AIDS, women with HIV disease are much less likely than men with HIV to receive potentially life-prolonging therapies despite the availability of private insurance coverage (Hellinger and Encinosa, 2004). Other examples of gender-based disparities occur in the area of diabetes, orthopedic surgery, kidney transplantation, and colorectal cancer screening. In these and many other examples, women are less likely than men to receive these therapies (AHRQ, 2006). Recent reports suggest that some reasons for these gender-based health disparities are a result of differences in the financial status of women, exclusion of some women’s health issues from insurance coverage, lack of transportation, lack of availability of childcare, and women’s concerns about quality of care (HJKFF, 2002; National Women’s Law Center and Oregon Health and Science University, 2004) Disability-based Health Disparities. The fact that people with disabilities are affected by inequities in health care is also receiving increasing attention. Women with a variety of disabilities have reported encountering multiple barriers when they attempt to obtain even

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routine health care. Women who are successful in identifying health care providers with accessible offices, often find that their health care providers do not address health care issues adequately, including health promotion and preventive screening, even if women themselves raise these issues with them (Nosek, Young, Rintala, Howland, Foley, and Bennett, 1995; Nosek, Howland, Rintala, Young, and Chanpong, 1997; Becker, Stuifbergen, and Tinkle, 1997; Sharts-Hopko and Smeltzer, 2004). Women with disabilities encounter a number of physical, structural and attitudinal barriers that negatively affect their communication with health care providers and access to care. Physical and structural barriers include lack of accessible health care facilities for health visits or preventive screening examinations. Narrow doorways, steps that limit mobility, absence of grab bars, and lack of assistance during health appointments or screening serve as insurmountable obstacles to care and result in negative experiences for many women with disabilities. Offices and clinics are often equipped with examination tables that make it difficult if not impossible for women with physical limitations to move onto a table several feet off the floor to undergo a thorough examination (Nosek, et al., 1997). Women with major lower extremity disability are much less likely than other women to receive gynecological exams, Pap smears, mammograms and clinician inquiries about smoking (Iezzoni, McCarthy, Davis, Harris-David, and O’Day, 2001). They also have bone mineral density testing less often than recommended and significantly less often than women without disabilities (Smeltzer, 2006; Schrager, 2004). Women with disabilities receive recommended treatment for breast cancer less often than women without disabilities (McCarthy, Ngo, Roetzhelm, Chirikos, Li, Drews, and Iezzoni, 2006). Women with disabilities, including those who are well-educated, high-functioning and productive members of society, have reported being treated by health care providers as if they were children or were cognitively impaired. Health care providers are described as often condescending or patronizing. Women with disabilities have also reported that they have encountered health care providers who fail to take the time to communicate with them or to adequately explain health issues (Iezzoni, Davis, Soukup and O’Day, 2002; Iezzoni, Davis, Soukup and O’Day, 2003; Smeltzer, Sharts-Hopko, Ott, Zimmerman, and Duffin, 2007). They report that their health care providers do not provide information about reproductive health issues that women without disabilities expect and receive without question. Women with disabilities often feel depersonalized by and burdensome to health care providers. Further, those with severe disabilities or disabilities that make health care providers uncomfortable are less likely to receive health care than people with less severe disabilities (IOM Report, 2004; Becker, et al., 1995). Some women have been refused care because they have a disability (Nosek et al., 1997; Smeltzer et al., 2007). Health care providers may focus exclusively on women’s disability and neglect common health issues and health promotion (USPHS, 2005; Iezzoni, McCarthy, Davis and Siebens, 2000; Smeltzer, 2007). Women report that pelvic examinations or mammograms are infrequently suggested to them if they pursue such screening and that experienced providers and accessible facilities are difficult to find (Iezzoni et al., 2001. Some have reported that some providers do not promote primary healthcare because they believe that the women’s life expectancies are reduced and health screening is not worthwhile for them (Nosek, Gill, Chevarley and Thierry, 1998). Women with disabilities report that few health care providers seem to be knowledgeable or comfortable providing health care to them, which is consistent with the Institute of

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Medicine’s (IOM) 2004 report on disability in America. The IOM points out that health care professionals are often ill informed about health care needs of people with disabilities. They lack information about the prevention and management of secondary health conditions, aging with disabilities, and the transition of young adults from pediatric to adult health care services. Health care providers often define women with disabilities solely in terms of their disabling condition. Women report that providers often demonstrate lack of knowledge, awareness, and sensitivity to the issues of being disabled and to women's specific and general health care needs. Women with limitations of mobility, vision and hearing indicate that few health care providers are aware of available resources that could benefit their patients. Many women with disabilities report that health care providers seem to be uncomfortable addressing sexuality and childbearing with them. Many women have reported encountering negative judgments about sexual and reproductive choices, and health care providers who were nonsupportive of their decisions to have children (Smeltzer et al., 2007).

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SOCIAL AND CULTURAL FACTORS AFFECTING HEALTH CARE OF AFRICAN AMERICAN WOMEN WITH DISABILITIES Many African American women with disabilities experience discrimination and stigma related to being members of three "minority" groups and the resulting stereotyping and bias that place them at increased risk for oppression (Glenn, 1995). Despite the strength of the evidence that African Americans, women, and women with disabilities are likely to experience health disparities and less likely to receive health care, relatively few studies have been conducted on the combined effect of these factors on primary health care of African American women with disabilities. The paucity of studies contributes to the general lack of information about this group of women and results in continuation of the health disparities that affect their health and health care. There is, however, some information that can inform the discussion of primary health care of African American women with disabilities. These include a number of social and cultural issues, including low rates of employment and high incidence of poverty. Other issues that affect African American women include their own expectations and those of their families and communities. These include expectations of family, community and women themselves about the role of caregiving. Additional factors include the perceptions of African American women about the feminist and disability rights movements and factors inherent in today’s health care system. Employment. In 2000, people with disabilities between the ages of 16 and 64 yrs of age were less likely to be employed than people without disabilities. While 79.9% of working-age men without a disability were employed, only 60.1% of those with a disability worked. Among women of working age, the respective employment rates were 67.3% among nondisabled women and 51.4% among women with disabilities. Thus, women with disabilities are not only employed at a lower rate than women without disabilities, they are also employed at a lower rate than men with disabilities (U.S. Bureau of the Census, 2006). Although these issues affect all women with disabilities; they are even more likely to be issues for AfricanAmerican women with disabilities because of fewer opportunities for some African American women and continued racial and ethnic bias. Poverty is just one of many consequences of unemployment.

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Poverty. Women with disabilities have been described as one of the most economically and socially deprived groups, and more likely to receive assistance from governmental programs (Richman, 2007). One in every four (26%) Americans with disabilities of working age (between 25 and 64 years of age) subsists on an income below the poverty line used to determine eligibility for federal assistance and identified in the 2008 HHS Poverty Guidelines Ttable (Bowe, 2006). In stark contrast, 8% of adults without disabilities live in poverty. In 2000, 8.7 million people with disabilities were categorized as below the poverty level. The more severe an individual’s disability, the greater the likelihood that the individual will reside in poverty (U.S. Bureau of the Census, 2006). An important issue that affects health care is the lack of health insurance that occurs with unemployment and poverty (HJKFF, 2007). The number of African American women with disabilities who are unemployed and living at or below the poverty level is significantly higher than that of non-African Americans with disabilities. The lower average level of education that occurs in African American women compared to that of other groups serves as both an antecedent and a consequence of poverty; further, it has the potential to lead to health literacy that affects their ability to follow through with health care recommendations.

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2008 HHS Poverty Guidelines Persons in Family or Household

48 Contiguous States and D.C.

Alaska

Hawaii

1

$10,400

$13,000

$11,960

2

14,000

17,500

16,100

3

17,600

22,000

20,240

4

21,200

26,500

24,380

5

24,800

31,000

28,520

6

28,400

35,500

32,660

7

32,000

40,000

36,800

8

35,600

44,500

40,940

For each additional person, add

3,600

4,500

4,140

SOURCE: Federal Register, Vol. 73, No. 15, January 23, 2008, pp. 3971–3972.

Cultural Factors. Although many people today have a greater understanding and acceptance of disability, stigma associated with disability remains (Glenn, 1995; Peterson, 2006). This stigma may be particularly problematic for African American women with disabilities who view disability in very negative terms and as a state of helplessness and dependency to be avoided at all costs. Some African American women with disabilities reject the idea of having a disability or being disabled as part of their identity despite the fact that they are unable to work and receive disability benefits (Feldman and Tegart, 2003). Another cultural issue that affects African American women is their view of caregiving as central in their lives and identities, as they are often socialized to put the needs and demands of others before their own. This also occurs in African American women with

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disabilities who often try to meet their own expectations and those of their families and communities while trying to deal with disabilities that affect their energy and resources (Feldman and Tegart, 2003; Nabors and Pettee, 2003). Some African American women with disabilities have reported that they were in fact expected to be “superwomen” in terms of serving as caregivers for other family members, who may include young children as well as adult children, spouses, older parents, and adult siblings, despite having significant needs of their own related to having a disability. As a result, they were unable to deal directly with issues related to their disability. This is in contrast to the perceptions of other women with disabilities who are often seen as less capable of nurturing others and in need of nurturing themselves (Nabors and Pettee, 2003). Feminist and Disability Rights Movements. Despite the advances made in the rights of women and persons with disabilities over the last several decades, there is a sense among some African American women with disabilities that they have been excluded or ignored by both the feminist movement and the disability movement (Glenn 1995). They view both the feminist and disability rights movements as predominantly White efforts with which they have little in common (Feldman and Tegart, 2003). Consequences of failure of the feminist and disability movements to reach women from diverse ethnic groups are the perceived discrimination and oppression from multiple sources related to the intersection of disability, race, and gender (Peterson, 2006). It has also been suggested that the focus of the disability movement on self-determination, autonomy, and independence may conflict with the community and family orientation of many African American women (Feldman and Tegart, 2003). Health Care System Issues. The health care system, which continues to be dominated by Caucasian health care providers, has been identified as a factor affecting health care of African Americans in general and African American women with disabilities specifically. African American women with disabilities have reported that they are invisible to the medical community (Nabors and Pettee, 2003). Women have reported being ignored and having others (i.e., health care professionals) in control of what was important in their care. While African American women are stereotypically perceived as more assertive than other women, they are seen as less visible within the predominantly White American health care system, a situation that is experienced by many women with disabilities regardless of ethnicity. African American community leaders have expressed general dissatisfaction with the existing relationships between African American communities and the existing health care system and have indicated that they want to be asked rather than told what they want or need (Di Bari, Suggs, Holmes, Farmer, Williams et al., 2007). Lack of cultural competence on the part of health care providers has also been identified as an important factor in African Americans’ dissatisfaction with health care. Summary. The types of health disparities that together affect African American women with disabilities and those factors that play a role in their access to health care have great potential to affect the health and well-being of this group women. Clearly, the description of African American women with disabilities as at-risk because of “triple jeopardy” is an accurate one (Glenn, 1995; Alston and McCowan, 1994). While there has been some progress in how society addresses the health disparities over the past few years, it is clear that too little attention has been given to women who are most at risk, and to those who are the victims of discrimination because of the combined effect of race, gender and disability. Strategies are

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needed to address the health care of African American women with disabilities, through research and changes in practice and public policy.

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STRATEGIES TO IMPROVE HEALTH CARE OF AFRICAN AMERICAN WOMEN WITH DISABILITIES Despite the relative lack of information about the health care and health status of African American women with disabilities, it is clear from the previous discussion of health disabilities affecting African Americans, women, and people with disabilities that the issue requires considerably greater attention from researchers, clinicians, public policy makers and society as a whole. The large and growing number of people with disabilities in general and the growing proportion of people in the U.S. who are from “minority” groups mandate that attention be paid to increasing the knowledge base on health disparities that affect African American women with disabilities. In view of the increasing number of people with disabilities, including African American women with disabilities, strategies are necessary to promote positive views of disability while promoting healthy living (Feldman and Tegart, 2003). This would enable African American women to avail themselves of the services and opportunities that are available. Doing so would enable such women to participate in primary health care, including preventive health screening and health-promoting activities. The perception of disability as a negative condition to be denied and the stigma that is associated with disability make it difficult for some African American women with disabilities to take advantage of programs and services that have the potential to improve their access to health care and health promoting activities. Thus, increasing the visibility of positive images of women with disabilities, specifically focusing on African American women, has the potential to change the views of the African American community as well as those of health care professionals who interact with African Americans and women with disabilities. African American women with disabilities who see women similar to them depicted in brochures and flyers addressing health issues may benefit from a more positive view of themselves. The feminist and disability movements, which have been viewed by some African American women with disabilities as not relevant to them because of the predominance of Caucasians, should be mobilized to include this group of women who are at triple risk for oppression and invisibility. Empowerment of African American women with disabilities is a goal that should resonate with both the feminist and disability movements. Increasing the reach and impact of these two efforts to African American women with disabilities would be beneficial since they have been described as one of the most disadvantaged groups because of the interplay of three separate sources of oppression. Complete and accurate data on the health care of African American women with disabilities are difficult to obtain thus making it difficult to appreciate the true magnitude of the issue. One factor contributing to this is that racial, ethnic, and socioeconomic differences related to disability are not addressed in community-based research; when data on these factors are collected, they are not collected in the same way. Thus, accurate analyses are difficult to conduct (AHRQ, 2006; Bertoni, 2008). The health care community together with advocacy groups, the scientific community, public policy makers, and those who care for and about African Americans with disabilities need to support the efforts to collect data on these

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issues. Further, relatively few studies have focused specifically on African American women with disabilities or included an adequate number of them in their samples. The Institute of Medicine has suggested that research and related efforts are needed to increase the knowledge base about health disparities and disabilities. Strategies suggested in the 2002 and 2004 IOM reports apply to health disparities and disabilities in general and are particularly relevant to the health of African American women with disabilities. These include the development of systematic reviews of existing evidence, the identification of gaps in knowledge about the issues, and the development of evidence-based guidelines. These efforts can serve as a starting point for collaboration among professional societies, African American women with disabilities, and others with the goal of generating guidelines for clinical practice and health care providers and as sources of information for consumers, their families and communities. Community-based research strategies and participatory models of research should be implemented to encourage African American women with disabilities to participate in studies that will increase the knowledge base about the issues (Jackson, 2002). Researchers need to design and use innovative strategies to identify and include these women in studies to increase the knowledge base about their health care needs (Smeltzer, et al., 2007; Bryant, 2008). The voices of African American women with disabilities need to be heard on cultural issues that affect their health care, their views about disability, and their interaction with the health care system. Involving African American women with disabilities in the process of identifying issues most in need of research, and in conducting studies and disseminating the results is essential if research is to have an impact. Failure to do so risks increasing distrust of researchers by groups with a history of being exploited. It has also been suggested that researchers work to establish relationships with communities to encourage and enhance the participation of underserved minority groups in research (De Bari et al., 2007). A major issue that must be considered is that many women with disabilities, especially those with severe disabilities, are typically “hard to reach” or “hard to count”. This may be a particular issue with low-income African American women with disabilities who may have even less access and fewer resources than other women with disabilities; yet this group of women is even more invisible to the health care system and likely to be in greater need than others. Strategies to improve the knowledge, awareness and sensitivity of health care providers to the specific issues that affect African American women with disability clearly must be addressed using a variety of approaches, if one wants to rectify the problem. Promotion of a change in attitudes is notoriously difficult but creative strategies to do so must be developed, tested, implemented, and disseminated widely. The U.S. Surgeon General's call for attention to the issues and to improve the health status and access of persons with disabilities echoes that of the IOM’s report on disability in America (USPHS, 2005; IOM, 2004). Strategies to address the situation identified include educational programs, evidence-based reviews, practice guidelines, and other materials to support health professionals in caring for people with disabilities. Efforts to improve the cultural competence of health care providers in their approach to African Americans, women, and individuals with disabilities are needed if attitudes toward African American women with disabilities are to be improved. In addition, efforts are also needed to ensure that specific health care needs of African American women with disabilities are integrated into health professions’ curricula, including medicine, nursing, dentistry, and others. These must include reproductive health issues of African American women with disabilities, prevention of secondary conditions and aging with disability.

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Collaboration of clinicians, educators, and African American women with disabilities increases the likelihood that the health-related issues that are included in these educational programs are those that are relevant to African American women themselves.

SUMMARY AND CONCLUSION This chapter has examined the issues affecting health care of African American women with disabilities. Because of the absence of a substantial body of research related to health care and health screening of African American women with disabilities, it was necessary to extrapolate from studies that relate to health disparities that separately affect African Americans, women, and people with disabilities. Although these three characteristics clearly describe African American women with disabilities, the intersection of these three characteristics and their combined impact have been the focus of woefully little research to date. It is clear, however, that the health disparities that affect African Americans, women, and people with disabilities, are likely to have an exponential effect on African American women with disabilities. While several factors affecting health and health care in African American women with disabilities have been discussed, many more factors and issues require attention by researchers. Strategies are needed to improve the health care system to more effectively accommodate African American women with disabilities who feel invisible or unwelcome in the predominantly Caucasian environment in which few health care providers are knowledgeable and sensitive to their issues. To make a significant difference, changes need to be made throughout the health care system and in health professions educational programs. While legislation that targets some of the issues discussed in this chapter exists, it will continue to have little effect on the health and health care of African American women with disabilities without a concerted effort by advocates, legislators, and others who are committed to improving the health and well-being of this population of women as recommended by the U.S. Surgeon General’s recent Call to Action (USPHS, 2005).

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ACKNOWLEDGMENT The author of this chapter would like to thank Nancy Sharts-Hopko, PhD, RN, FAAN and Patricia Bradley, PhD, RN for review of the final draft of this chapterpaper.

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Chapter 4

WHEN I COME TO THE END OF MY JOURNEY: CORRELATES OF MORALE IN THE ELDERLY AFRICAN-AMERICAN FEMALE Gloria Boseman

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ABSTRACT By 2030, one in three Americans is expected to be 55 years or older and one in five to be at least 65 years of age (Larue, 1992). Very elderly persons (85 years and older) now constitute one of the fastest growing groups in the country. Older African-American populations are growing even faster than the increasing population of older adults in general. Larson and Imai have noted that, in the United States racially diverse elderly populations are growing twice as fast as the general population. The population of individuals over the age of 65 years is estimated at 30 million today and expected to explode to over 80 million by the year 2050, with women outnumbering men (Byrd, 2006). Minority elders are expected to account for 50% of the elderly population and 12% will be the identified as non- Hispanic Black. There is no question that the disparities in health that exists across the board are emphasized in the minority elder population. This higher mortality rate in the minority elderly reflects the toll on their lives as a result of a lifetime of discrimination, public neglect and abuse. Many view the African –American female’s sum experiences as resulting in the culmination of a triple jeopardy, that is being old, African American and female – the victims of ageism, racism and sexism. If one considers that over fifty percent of elderly African American females also live in poverty then another descriptor can be added to the jeopardy – classism. In contrast to this gloomy perspective many other studies reveal that elderly African American females express a greater level of life satisfaction than do their comparable cohorts. Morale is a concept used to evaluate life satisfaction in the elderly. This chapter will focus particularly on correlates of morale in elderly African-American women. Theories of coping, social activity, and resilience as related to morale are explained as they connect to life satisfaction in this complex group (Boseman, 2000).

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BACKGROUND Approximately 13 percent of the total U.S. population is 65 years of age or older (U.S. Department of Health and Human Services, 2005). By 2050, the number and the proportion of older adults in the United States are projected to increase substantially. This population is also expected to become much more racially and ethnically diverse than it is today. While the total number of elderly Whites ages 65 and older is projected to double from the present figure of 28.0 million to 62.4 million, the number of African American aged will almost quadruple from the present figure of 2.5 million to 9.4 million (U.S. Census Bureau, 1993). The number of elderly Hispanics and other racial minorities will increase eleven fold. The older African-American population is growing even faster than the increasing population of older adults in general, with women continuing to outnumber men (Byrd, 2006). Minority elders are expected to account for 50% of the elderly population and 12% of this elderly populace will be identified as non- Hispanic Black. The growing number and diversity of the United States elderly underscore the importance of reducing racial and ethnic health disparities for the support of the nation’s overall health. The older population is expected to reach 20 percent of the U.S. population within three decades. The rapid growth of the older population raises a concern for older consumers’ wellbeing since they are often at a disadvantage. It has been known that the older population is a vulnerable group, more susceptible to unscrupulous business practices than younger groups (Suzeanne, Pitts, and LaTour 1993). Currently, the African American aged comprises the largest segment of minority aged in the United States. Recent projections indicate although the progression rate has slowed; the African American subpopulation will continue to be significant. In fact, it is estimated that the population of African American aged will increase by 243.6% over the next 50 years (National Caucus and Center on African American Aged [NCCBA], 1993). Thus, although there are fewer African American aged relative to the African American population than there are White aged relative to the White population (Smith, 1990), the African American aged population is expected to increase at a faster pace than the non-ethnic aged population. There is no question that health disparities exist across the board and are emphasized in the minority elder population. This higher mortality rate in the minority elderly reflects the toll on their lives as a result of a lifetime of discrimination, public neglect and abuse. Many view the African American female’s sum experiences as resulting in the culmination of a triple jeopardy, that is being old, African American and female – the victims of ageism, racism and sexism. If one considers that over fifty percent of elderly African American females also live in poverty then another descriptor can be added to the jeopardy – classism. As a result, Black women are more likely to be poor, uninsured and to lack needed medical care than are White women. Complex mechanisms appear to be at the root of racial and ethnic gaps in health and quality of life indicators in elderly African Americans. Traditional arguments are that differences in socioeconomic status (SES), access to health care, and in health behaviors lie behind these racial and ethnic disparities. Additionally researchers generally agree that socioeconomic factors, psychosocial factors (for example, stress), quality of health care, culture, genetic factors, and environmental and occupational risks also contribute to the existing gap. However, there is no consensus on which factors matter most.

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Since the 1960s or perhaps even before, gerontologists have been developing conceptual frameworks or schema to describe ideal outcomes of the aging process. One of the most commonly used terms to describe a good old age is "successful aging", often attributed to R. J. Havighurst (1961). The concept of successful aging is central to gerontology. An interest in successful aging has remained high through the successive decades, successful aging should focus on people with better than average physiological and psychosocial characteristics in late life. Various factors or conditions that impact on and are significant to the African American aged female include demographics, functional status, socioeconomic status, informal support, and threats to traditional roles of African American families and communities that have not been clarified. Subsequently, the traditional approach to these women has been incomplete and unsuccessful. This chapter will focus particularly on correlates of morale in elderly African-American women. It explores theories of successful aging and how social activity, resilience, and coping are related to morale which plays a key role in life satisfaction for this complex group. The chapter is an effort to explain life satisfaction, or the lack thereof, in elderly African American women.

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THEORIES ON SUCCESSFUL AGING It is difficult to determine what is meant by successful aging. There is no single wellaccepted definition or model of successful aging that has stood the test of time. Havighurst (1961) defined it as "adding life to the years" and "getting satisfaction from life". Rowe and Kahn (1987) defined it in terms of multiple physiological and psychosocial variables. Gibson (1995) stated that successful aging "refers to reaching one's potential and arriving at a level of physical, social, and psychological well-being in old age that is pleasing to both self and others." (p. 279). In one of the earlier theories of aging, Cumming and Henry's (1961), proposed that in the normal course of aging, people gradually withdrew or disengaged from social roles as a natural response to lessened capabilities, diminished interest, and to societal disincentives for participation. In this model, the successfully aging person willingly retires from work or family life and contentedly takes to a rocking chair, or pursues other solitary, passive activities while preparing for death. In their theory of disengagement, withdrawal results in a decline in activity and interaction in major life roles such as work as individuals grow older; they also withdraw from the larger social system (Cummings and Henry, 1961). Confirming this way of thinking, Thompson (1976), describes how loss of the work role with retirement can signify to the individual and to society that the individual is useless and is no longer a contributing member to the community. Another major theory of aging, referred to as "Activity Theory”, proposed that people age most successfully when they participate in a full round of daily activities, that is, keep busy (Lemon, Bengtson and Peterson (1972). This theory seemed to explain the surge of volunteerism and senior activism in the 1960s and 1970s and may have been partly responsible for public policies which underwrote the development of senior centers and other recreational facilities in that period.

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Lemon, Bengston and Peterson (1972) propose an alternate perspective regarding activity among older persons. These theorists defined activity among older individuals “as any regularized or patterned action or pursuit beyond routine physical or personal maintenance” (Lemon et al, 1972, p. 513). They proposed three types of activity: (a) informal activity which includes social interaction with relatives, friends, and neighbors; (b) formal activity which includes participation in formal organizations; and (c) solitary activity which includes such pursuits as watching television, reading, and hobbies of a solitary nature. Lemon et al. proposed that interpersonal activity provides opportunity for individuals to enhance their selfconcept and life satisfaction because of positive feedback received from others. Informal and formal activity, whereby individuals receive positive reassurances from others, compared to solitary activity where positive reassurances are not readily forthcoming, provide elderly with increased opportunity for life satisfaction. Empirical research has demonstrated the heterogeneity of older people, including many people who prefer less structured lives or do not have the health or means to pursue a full schedule of activities. Nevertheless, activity is widely touted by older adults themselves as the key to successful aging, so much so that gerontologists have dubbed this philosophy "the busy ethic" (Ekerdt, 1986). The focus on physical activity in the form of exercise does not fully encompass the lifestyle of the elderly African-American women who generally live with or within close proximity of other family members, attend and participate in church activities regularly, and continue functional roles past retirement into aging (Allen and Chin-sang, 1990; Palmore, 1983; Weaver andGary 1996). These women who have lived through an era of blatant racial discrimination and segregation play key roles in the African-American community and are viewed as resourceful, energetic, courageous, hard working, active, and significant figures in the stability of and continuity of the Black family and community. Their participation in various church related social activities is thought to serve as a positive function in the normal aging process of African-Americans. If maintaining social activity promotes morale, more inclusive and culturally sensitive recommendations for public policy may need to be promoted. In contrast to Lemon, Bengston and Peterson’s (1972) Activity Theory which poses the notion that life is more fulfilling when one continues to keep busy, health promotion within the African-American community has been narrowly focused toward a biomedical model. The types of activities appealing to older African American women alter as they age. Although traditional work roles cease as the primary activity, other formal activity through participation in organizations and informal activity through interpersonal friendships, and to a lesser extent, solitary activity, replace traditional work role activities. In general, elderly Blacks do not participate in social or recreational activities that are outside the realm of their individual cultural traditions, backgrounds, or experiences (Jackson, 1988). However this is changing, nonetheless increased spirituality, faith in God, and increased participation in religious activities and institutions still play an important role in providing support for older African Americans. Religious beliefs provide a resource for coping with the unexpected or losses (which naturally increase with age). The church may also serve as a focal point for emotional and material aid as well as supportive networks and social activity. Relative to social inactivity, many older persons are at risk of self neglect. Defined as the inability to provide basic needs for oneself (Dyer, et al, 2007), self-neglect is a controversial

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category in relation to elders. Among the elderly, self neglect results in a failure to perform activities of daily living, and according to Dyer, et al (2007), it manifests as a combination of poor hygiene, filthy living conditions, a lack of utilities, excessive pets, and inadequate food. Self-neglect, if included statistically as a form of elder abuse, represents the highest percentage of cases of elder abuse. Unfortunately, these statistics fail to take into account the fact that self-abusers do not fit a uniform profile. There are many factors which may lead one to self-neglect and the subsequent intervention necessary for each is unique. Many older adults live on the edge financially. For example, over half of older African American women have been identified as impoverished. To add to this condition many of these community dwelling elders live alone and are isolated. Isolation impacts a myriad of physical and mental health variables. There is a clear cut correlation between social support and life satisfaction. As life satisfaction decreases, the risk for self-neglect increases and the amount of social activity also diminishes. Intervention entails the creation of trust, increased involvement of the older adult in the community, and the creation of social supports. This, of course, may be problematic for those individuals who have had little social support throughout their life-span. Atchley, (1972) proposed a continuity theory. This theory proposes that the people who age most successfully are those who carry forward the habits, preferences, lifestyles and relationships from midlife into late life. For most people, late life does not represent a radical break with the past; changes often occur gradually. People don’t change as the aging process unfolds; they seek to continue patterns albeit modified. Even as African-Americans have experienced less than perfect lives, the habits that they developed for survival are apparent in their latter years. Austin (1991) reminded the gerontological community not to forget those who cannot age well because of social factors over the life course (e.g., poverty, rural residence, poor nutrition, substandard housing, limited educational opportunities, abuse or catastrophic losses) that reduce life chances and limit access to an "aging well lifestyle". While today, Angus (2006) describes ageism as a major threat to "aging well" in the 21st Century. Moreover, in the past, trends emphasized the strengths and growth potential of aging individuals (Sullivan and Fisher, 1994) and concepts such as self-efficacy (Bandura, 1982), and life enrichment (Manheimer, 1994) were receiving considerable attention. When reviewing lifestyles it seems that many of the activities may be related to a familiar modelMaslow’s Hierarchy of Needs. The evolving theory seems to reflect successful “agers” as moving towards a reality based self actualization. However, Allison (2004) did not find that a self-efficacy intervention was effective in increasing physical activity among older adults. In summary, initially disengagement theory viewed aging as a process of mutual withdrawal in which older adults voluntarily slow down by retiring, as expected by society. Proponents of disengagement theory hold that mutual social withdrawal benefits both individuals and society. Activity theory, on the other hand, sees a positive correlation between keeping active and aging well. Proponents of activity theory hold that mutual social withdrawal runs counter to traditional American ideals of activity, energy, and industry. There is no real conclusion as to which approach guarantees positive aging. Essentially the only thing that remains, is that growing old means different things for different people. Individuals who led active lives as young and middle adults will probably remain active as older adults, while those who were less active may become more disengaged as they age. It also remains true that as older adults approach the end of their life span, they are more apt to conduct a life review and take stock of their life satisfaction. Throughout the process, they

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look back to try to find the meaning and purpose that produce satisfaction with their lives. That said there are still a number of theorists who link successful aging and life satisfaction with morale. In addition, an increase in social activity is said to increase morale which contributes to life satisfaction and is seen as successful aging.

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MORALE, LIFE SATISFACTION AND SUCCESSFUL AGING Maddox (1963) investigated the relationship between activity and morale in a sample of 182 subjects who were 60 or more years old and who were participating in a longitudinal, multidisciplinary study of human aging conducted by the Department of Psychiatry of the Duke University Medical Center. Activity was measured by an inventory designed to assess the individual's contact with the environment and included items related to intimate social contact with friends and relatives, use of leisure time, and organizational participation and membership. Morale was measured by an inventory designed to probe the individual's feeling of satisfaction or dissatisfaction with his health, social relationships, personal usefulness, and the happiness experienced in living. No reliability or validity was presented for the inventories. Using dichotomized scores for both activity and morale based on the median, findings supported the hypothesized relationship that activity would be positively related to morale (X2 = 70.1, p < .001). Deimling, Harel, and Noelker (1983) compared 183 Bblack and 129 Wwhite aged residents in either an age-segregated or age-integrated housing unit on activity and life satisfaction, an aspect of morale. Activity was measured by a Group Activities index based on the individual's frequency of participation each week in group recreational, social, or cultural activities and a Social Resources index that identified the number of family and friends, their proximity, and frequency of contact. Findings indicated that Bblack compared to Wwhite residents had significantly greater social resources and group activity (both p < .001) and greater life satisfaction (p not stated). Stepwise multiple regression showed that the extent of participation in group activities was the single best predictor of life satisfaction for Blacks while perceived health was the single best predictor of life satisfaction for Whites. Although findings from this study must be interpreted with caution due to unknown reliability and validity of the instruments, there is support for the relationship between activity and morale among older Blacks. Life satisfaction is variously viewed as a prime indicator of overall life quality, however much of the literature on the elderly has focused on a mono-cultural perspective and specifically the African American elderly female is not addressed in totality. Such a gap in the research profile compounds the issue of the health disparities that exist in America. The changing demographics in the American population dictate an imperative to address this research gap and the paucity of evidence to support efficient health care strategies for this group. Meaningful activity, according to Kutner, Fanshel, Togo, and Langner (1956), contributes to one's basic life satisfaction. Meaningful activities include those that allow for an outlet of feelings, provide for social relationships, and are economically gainful. Kutner et al acknowledged that any activity that provides for achievement and recognition may promote morale. Kutner Fanshel, Togo, and Langner added that an activity is perceived as meaningful

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by individuals if it contributes to their overall feeling of purpose and satisfaction. Creecy and Wright (1979) support this theory asserting that this association may be based upon the premise that social activity provides the role support necessary for the maintenance of selfconcept that in turn is correlated with high morale. Since African American women are living longer today than in any other period in history, there is a need to address the paucity of knowledge on just how this longevity is experienced in terms of successful aging. Morale is a concept that has been historically linked to assessments of life satisfaction in the elderly. Kutner, Fanshel, Togo, and Langner (1956) have described morale as a continuum of responses to life and living problems that reflect the presences or absence of satisfaction, optimism, and expanding life perspectives, Lawton (1975) has added that a sense of uniqueness and purpose also factor into positive morale. Little knowledge is available regarding the elderly African American female and morale. It will be important for these women to be informed of what type of phenomena influence the specific aging experience and how these factors contribute to successful aging. Anthony (2007) did not find a statistically significant relationship between health status and life satisfaction and morale in a sample of 100 African Americans drawn from persons attending several senior communitybased programs in Washington, DC. Eighty-two of the participants of Anthony’s study were women. She concluded that discrimination has severely compromised the health of older African Americans. Anthony contributed their low levels of life satisfaction and morale to the lack of adequate income to meet their needs which frequently lead to feelings of agitation. Williams, Tibbits, and Donahue (1980) proposed that social activity enhances morale to the extent that it allows for continuation of fundamental behavior patterns and value orientations. These authors purport that in the absence of the formal activity of work, individuals must address the need of filling life with meaning. Williams, et al continue that maintaining the meaning of life is accomplished through continuity. The work experience satisfied a number of fundamental social needs for those elders who have worked in the past. An occupational society places an enormous emphasis on the value of work. When the role of worker is discontinued, the goal of society and the individual in relationship to adjustment is to keep the aged person in touch with societal processes and prevent the formation of an isolated world where the person neither has purpose nor feels needed. Lemon and Bengston and Peterson (1972) further expound on continuity of life into old age. They affirm that psychological wellbeing is a function of the degree to which a person can maintain patterns of activity and involvement into late life. The norms and personal needs of an individual transcend life passages. As an individual faces losses, or is forced to change an activity e.g. job, successful adaptation, or morale, is measured by the ability to compensate by increasing activities in other spheres. (Havinghust, 1961; Kuypers and Bengston, 1973). However, not enough is known about the process of Blacks growing old in America as compared to what is known about the general population. There remains a limited amount of research specific to both the aging population and the African American citizenry. In particular, Outlaw (1993) notes that there remains a dearth of research that examines AfricanAmerican health related to issues and interactions from a nursing perspective. Deimling, Harel and Moekler (1996) assert that this lack of attention to this glaring disparity is a serious omission in view of the fact that notable racial differences do exist in social-demographics and lifestyles of the African American population in comparison to the majority population. Consistent with these views is the 1980 mission statement of the American Nurses Association (ANA) exposing nursing of the need to understand ethnically diverse people

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(Porter and Villairruel, 1993). Durkehiem’s (1951) positive view of morale is one of happiness and satisfaction and one steeped in a positive effect. In contrast, Kutner, Fanshel, Togo and Langer (1957), refer to the presence or absence of satisfaction, optimism, and expanding life perspectives in their view of morale. In fact, they postulated that one’s flexibility and capacity to change roles, motives, and perceptions during the life process influences morale. The classic literature by Cummings, Dean and Newell (1958) conceptualized morale as reflecting the individual's vitality, ability to relate to others, and flexibility for one’s own behavior, while setting appropriate goals based on ability. Thus, Cummings et al. posited that individuals who reflect high levels of morale possess energy or vitality, form effective relationships, and have the ability to change the means, the goals or the experience. For an individual possessing adequate morale, changing or securing resources to reach a resolution may involve shifting interactions to fit the situation. Goals are then addressed to match the individual’s ability to achieve them. Resolutions are in the context of accepting responsibility for one’s own behavior and placing success in terms of what can be realistically achieved (Cummings and Henry, 1961). Noting that morale differs for each individual, Lawton (1972, 1975), highlighted the point that there is a wide range of behaviors that reflect morale. Lawton linked social behaviors, sense of satisfaction, and one’s perception of being useful to morale. In summary, morale is a concept associated with life satisfaction. Although vigilance to the concept has weaned over the years it remains a critical aspect to be examined and has particular relevance to the African American population. A number of variables have been linked to morale in an effort to determine which promote or inhibit its expression. Health, actual and perceived, social support, and physical functioning appear to be important. Additional variables identified in the literature that are theorized to influence morale are coping, social activity, and resilience.

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RESILIENCE, COPING AND MORALE The term "resilience" is reserved for unpredicted or markedly successful adaptations to negative life events, trauma, stress, and other forms of risk‘. If we can understand what helps some people to function well in the context of high adversity, we may be able to incorporate this knowledge into new practice strategies (Fraser Richman, and Galinsky, 1999, p. 136) The survival of the elderly Black man or woman is testimony to their individual emotional and physical ruggedness; accordingly African-Americans have maintained a legacy of vulnerability and resilience (Carter, 1984; Greene, 1996). The various factors that make up resilience in this population extend beyond personality characteristics to the process of strategizing and surviving. The proposed strength of the African-American woman is a demonstration of resilience against seemingly insurmountable odds (Hhooks, 1984). Resilience can be accurately assessed, and if determined to be a contributor to positive morale and life satisfaction in the elderly African American female then one would be able to recognize and support the resilience and adaptive strengths of the African-American woman. Additionally the positive behaviors demonstrated by African-American women could be referenced as models to be encouraged in other elderly women.

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Ego-resiliency, according to Block and Block (1980), represents linkages of the ego structures that keep the personality system within tenable bounds or psychologically tenable modes that adapt. Ego-resiliency incorporates the essential qualities and functions of the ego aimed at controlling the individual's behavior. Block and Block defined ego-resiliency as "the dynamic capacity of an individual to modify his/her modal level of ego-control, in either direction, as a function of the demand characteristics of the environmental context" (p. 48). Block and Block also stated that ego-resiliency has implications for the individual's adaptive abilities under conditions of environmental stress, uncertainty, or conflict. Characteristics of ego-resilient individuals that facilitate adaptation include being resourceful, manifesting multiple solutions to problems, and maintaining integrated performance while under stress. Wagnild andYoung (1990) defined resilience as having cognitive functioning and inherent capacities that produce a flexible attitude, the ability to restore or maintain one’s balance following a difficult experience, and a general sense of satisfaction with one’s life leading to appropriate adjustment. Wagnild and Young (1993) also posited resilience as a personality characteristic that moderates the negative effects of stress and promotes adaptation. Their conceptualization of resilience emerged from analysis of older women's qualitative responses to successful adaptation to loss (Wagnild and Young, 1990). Five themes emerged from the analysis. They included: (a) equanimity, or having the ability to consider a broad range of experiences leading to a balanced perspective of one's life; (b) perseverance, or being willing to continue the struggle to reconstruct one's life and to remain involved despite adversity or discouragement; (c) self-reliance, or believing in oneself and one's capabilities; (d) meaningfulness, or realizing that life has purpose and to derive meaning from adversity by transforming negative events into opportunity for personal growth and satisfaction; and (e) existential aloneness, or realizing that each person's life path is unique and that the presence of aloneness was opportunity for creativity and freedom. Wagnild and Young concluded that these themes characterize women who, following adversity, can bounce back. According to Wagnild and Young, resilience connotes emotional stamina, courage, and adaptability in the wake of life's misfortunes. An interesting model of resilience in the elderly was suggested by Talsma (1995), who derived it from a physics model of resilience. The analogy to resilience of materials in physics is intriguing. The physics model and the derived model imply permanent deformation equated with chronic or ongoing conditions. These in turn affect the elastic strain energy, which refers to the energy applied to absorb the stress, or in resilient people, the behavioral strategies they employ to mitigate the impact of the stressor. Exploratory and confirmatory factor analyses were performed on data from the multiple measures. Three dimensions of resilience were identified: physical functioning, psychological functioning, and well-being. The conclusion was that resilient elderly people have high levels of physical functioning, are willing to take initiative and to expand behaviors, believe they have control over their current life, and are generally satisfied with their lives. Daly, Jennings, Beckett ,and Leashore (1995) posit that the afrocentric orientation to coping and resolving problems as an interpersonal process has endured a dominant western culture that values rationality, material achievement and individualism. The afrocentric world acknowledges affective reality as well as rationality, strives for system maintenance, and views humanity through a shared concern. This is the basis from which effective coping strategies have emerged for this group. This different orientation to coping has resulted in a

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misinterpretation of the effectiveness of the coping strategies utilized which includes both problem- and emotion-focused strategies. Although the elimination or modification of problematic conditions would appear to be the most desirable and effective approach to coping, elderly African-American women have historically had neither the power nor the resources to change much of their condition. In fact, there can be the perception that avoidance and other elements of magical thinking are actually the same as problem solving. The idea that elderly African-American women may employ coping strategies that are different than the mainstream yet no less effective can be useful knowledge and contribute to high levels of morale. Early conceptualizations of coping by ego psychologists viewed the concept as operating at an unconscious level through defense mechanisms. Defense mechanisms were postulated to protect one against intra-psychic conflicts and reduce intra-psychic tension (McCrae, 1984; Valiant, 1977). In contrast to this psychoanalytical approach, Lazarus (1966, 1981) proposed that coping is a cognitive phenomenological process of reciprocal relationships between persons and their environment where one is influenced by the other. Lazarus and Folkman (1984) also theorized that morale is one component of adaptation, which is the end result of the coping process. For these authors, positive morale depends on effective coping across a wide range of encounters. They defined coping as "constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person" (p.141). The coping process, according to Lazarus and Folkman, includes three components. In the first component, primary appraisal, the individual sizes the relevancy of a situation in terms of whether the threat is benign or stressful. In the second component, secondary appraisal, the individual determines what action, if any is to be taken and what are the consequences of that action. Finally, in the third component of reappraisal, the individual reviews the effectiveness of the coping efforts that may result in either changing the coping behavior or changing the way an encounter is construed. Lazarus and Folkman (1984) proposed that two basic coping efforts are used as a result of the secondary level of appraisal. First, problem-focused coping is characterized by some action directed at the situation, such as the removal or modification of the stressor. Problemfocused forms of coping are more likely to be used when potentially harmful, threatening, or challenging environmental conditions are appraised as amenable to change. Problem-focused efforts include defining the problem, generating alternative solutions, and weighing alternatives. Second, emotion-focused coping is characterized by intra-psychic processes as a way of reducing the emotional influence of the stressful situation. Emotion-focused forms of coping are more likely to be used when potentially harmful, threatening, or challenging environmental conditions are appraised and nothing can be done to modify these conditions. Emotion-focused efforts include avoidance, minimization, distancing, selective attention, positive comparison, and wrestling positive value from negative events. Both problemfocused and emotion-focused coping may be used at any given phase of a stressful encounter. Additionally, initial use of emotion-focused coping may facilitate subsequent use of problemfocused coping. Thus, Lazarus and Folkman theorize that both problem and emotion-focused coping can either facilitate or impede each other in the coping process, and that both need to be assessed. With little knowledge of elderly African-American woman and morale, it is important to explore these women’s experiences and determine what type of phenomena influence their

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specific aging experience, and how these factors contribute to successful aging. AfricanAmerican women, like all elderly, will experience many losses as they grow older. Additionally, growing old involves numerous life changes. Life for elderly African-American women has had the added stress of experiencing the direct hostility from the dominant group frequently under the guise of negative racial barriers. Since these women have been called to respond to various forms of discrimination in a wide range of circumstances (Greene, 1996), it is important to determine exactly what coping strategies contribute most successfully to high morale.

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THE LIVES OF OLDER AFRICAN AMERICAN WOMEN Most of the theorizing or empirical research on satisfaction among African American women has focused on the lower socio economic groups, who are often less educated, unemployed and whose health is compromised and express, in general, less over all life satisfaction. It is true that vulnerable populations such as African American children and the elderly were overrepresented among the poor in major U.S. cities in 2000. The percentage of African American elderly who are poor is generally twice the percentage of the total elderly population. In addition to living in poverty, more than half of Black elderly in America are in poor health. They also tend to experience higher rates of multiple chronic illnesses than the rest of the population. Hypertension, obesity, and diabetes, in particular, surface as three major diseases which are often found to be related to each other (Jackson, 1988). Left untreated, any one of these diseases can progress into more severe health complications such as stroke, blindness, loss of an extremity, impaired mobility, kidney failure, or heart disease. These three diseases are often associated with a lifetime of poor dietary habits, limited exercise, behavioral responses to discrimination, socioeconomic factors (such as persistent poverty), and poor coping or problem-solving skills--some of which may include the use of sugar, food, alcohol, or drugs, in excess, as a means of minimizing emotional pain and escaping the harsh realities of life. In turn, decreased self-image, self-worth, feelings of helplessness, hopelessness, and frustration often accompany these conditions. Another possible problem is non-adherence with medication instructions and schedules. This problem is often the result of fixed incomes which may not always cover ongoing medication costs. Mood swings, resulting from fluctuating sugar levels or misuse of drugs and alcohol, have also been noted as interfering with an individual's staying on a consistent medication schedule. Because of a lack of resources, inefficient doctor-patient relationship, and/or lack of research data applicable to dementias in the elderly Black population, there is an above-average potential for misdiagnoses. Black women have been subjected to discriminatory practices throughout their lives. They have had to develop various strategies to maintain equilibrium in social and economic situations. In addition, older Black women have had to face the triple jeopardy of the negative stereotypes of racism, sexism, and ageism. Edmonds (1989) believes that the African American elderly female's response to the situation has resulted in adaptations that are positive and successful outcomes. Life for elderly African American women has had the added stress of experiencing the direct hostility from the dominant group frequently under the guise of racial inferences. Since

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these women have been called to respond to various forms of discrimination in a wide range of circumstances Greene, (1996) proposes it is important to determine exactly what coping strategies contribute most successfully to high morale. In contrast to this gloomy perspective other studies reveal that the elderly African American females express a greater level of life satisfaction than do their comparable cohorts. Morale is a concept used to evaluate life satisfaction in the elderly. For African Americans, in particular, family is of primary importance. Family networks provide the main source of needed assistance later in life for many elderly Blacks. In fact, when elderly Blacks live with their children, the possibility of them being institutionalized for disabilities decreases. In some scenarios, elderly African American females who began life impoverished benefit in old age because of their offspring’s success. Like their cohorts college-educated African American elderly women who are generally more financially secure may be more satisfied with how their life has turned out so far. For the overall elderly population, life satisfaction seems to be predicted by the women's perceptions of personal control, role quality, household burden, and their cohort status. Work satisfaction was best predicted by the women's sense of personal control and role quality. Lastly, household burden and physical well-being emerged as significant predictors of personal satisfaction.(Tangri, Thomas, Mednick and Lee, 2003). With African-American women living longer, it would be useful to identify how mature Black women experience longevity experienced in terms of successful aging. Described as an antecedent to successful aging, morale is a concept that is linked to an elderly person’s assessment of life satisfaction. Kutner Fanshel, Togo, and Langner (1956) see morale as a continuum of responses which shape and are formed by life and influence life satisfaction. An early conceptualization of morale by Durkehiem (1951) viewed the concept in dichotomous terms. Dukeheim believed that morale is a consequence of regarding the world and one's relationship to it as either strongly negative or strongly positive. In a negative extreme, life is viewed as not being worthwhile and as one without hope. The positive view of life is one of happiness and satisfaction, and one steeped in a positive effect. Lawton (1972, 1975) building on the earlier conceptualizations of morale recognized the wide range of behaviors that reflect differences in morale. Lawton believed that positive morale reflects a basic sense of satisfaction with oneself and ones/environment. Lawton concluded that morale was related to active social behaviors and is multidimensional consisting of a basic sense of satisfaction with oneself. Morale also includes a feeling of having attained something in life, a perception of oneself as useful and with purpose, and thinking of oneself as an adequate individual. Allen and Chin-Sang (1990) describe the life of someone who is older, Black, and a woman "... they enter their later years bearing scars... from confronting a lifetime of social indignities and second-class citizenship, a history of unequal educational and employment opportunities and economic inequities"(p.36). African American women have been the recipient of prejudicial behaviors that are rooted in racism, ageism, and/or sexism. Yet for many these are better times - they have successful children who provide amenities far beyond what they could have ever actualized for themselves. Growing up many times in desolate isolation, impoverished; with limited access to a quality education, living conditions and health care, they have suffered the hardship of disproportionate illness, widowhood, victim and victimless crimes, abandonment, and dreams deferred, but many now live vicarious and victorious lives through their children and are sustained in their faith.

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THE ROLE OF RELIGION Although using religion as a coping mechanism was traditionally viewed by the Lazarus and Folkman model as an emotion - focused coping mechanism and subsequently an ineffective coping mechanism, it now appears that this assumption may not hold weight in the communities of African heritage. Chatters, Taylor, Jackson and Lincoln (2008) studied religious coping among African Americans, Caribbean Blacks and Non-Hispanic Whites. This study examined demographic predictors of attitudes regarding religious coping (i.e., prayer) during stressful times and a look to God for support, strength and guidance. A comparison of African Americans and Black Caribbeans revealed both similar and divergent patterns of demographic effects. Both African Americans and Black Caribbean women were more likely to utilize religious coping. Southerners were more likely than respondents who resided in other regions to endorse religious coping and those who emigrated from Haiti were more likely than Jamaicans to utilize religious coping when dealing with a stressful encounter. David Larson acknowledged that spirituality and religion have been seen as ‘bad and ugly' for decades by health professionals." Larson, President of the International Center for the Integration of Health and Spirituality, recalls that historically the negative aspects of religion were emphasized. These might include patients feeling rejected by a higher power, or that a serious illness was judgment from the higher power for something the person had done. Larson found that most of the studies on religion and health showed a positive link, in fact the more serious the illness, the more important the spiritual factor seems to become." Nelson-Becker (2004) proposed that mental health and social service providers need to understand the contextual experience of diverse aging populations and the types of life challenges they have encountered. Becker examined the life challenges specified by a purposive sample of 75 urban community-dwelling low-income older adults from four highrise housing facilities. Thirty-four of the study participants were Jewish American and 41 were African American. Personal events such as bereavement and health were not viewed as stressors. Both groups found social resources moderately valuable in meeting life challenges, but religious resources were frequently identified by African American older adults and personal resources were highly endorsed by Jewish Americans, resulting in a hierarchy of coping styles for each group. There is no singular approach to religious coping among African Americans. Some may use a collaborative approach reflected in attempts to gain control over a stressful situation by actively working with God, often described as an empowered approach, while others may utilize a deferring process of relying on God to address stressful situations which may be viewed as leaving the person powerless. In addition, there may be qualifiers such as a woman’s socioeconomic background, coping history, and education that can impact the extent to which African American women use religious coping. It is clear that at least for African American elderly women, religion, spiritual beliefs, and religious coping are important components of understanding coping and ultimately morale in the elderly African American population. In synopsis, it appears that, for the older Black woman, coping is viewed as a response to both the psychological and environmental demands of specific stressful encounters. Primary

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and secondary appraisal of the encounter occurs, followed by problem-focused and/or emotion-focused coping and reappraisal behaviors. Boseman (2000) studied 100 urban community dwelling African American elderly females who had higher levels of resilience, social activity, and effective emotion-focused coping which subsequently explained their higher morale and life satisfaction. In explaining the significant inverse relationship between problem-focused coping and morale it was noted that the more frequently utilized spiritually based emotion-focused coping strategies (prayer) of the elderly African American female made them more likely to use a problem focused intervention than an emotional based inaction . For many African American women and particularly for the elderly, spirituality is not only utilized as a primary coping mechanism but provides opportunities for social activity and is a vital source of resilience. African American elderly females articulate their meaning of spirituality, spiritual practices, spiritual experiences with hardships, and how spirituality helps them to cope, heal themselves, and uplift their morale. A relationship with God was also a key theme emerging from these women. Unlike the powerless perspective that frequently emerges from the main stream literature when addressing religion, for this seasoned cultural group, religion is perceived as personal, reciprocal, and empowering. Similar to Boseman’s (2000) findings, Blacks (2000) assert that this relationship allows them to take an active and positive stance in viewing and interpreting the circumstances of their life. Their spirituality imbues their hardship with meaning, engenders self-esteem, keeps despair at bay, and grants hope for rewards both in this life and the next.

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CONCLUSION AND IMPLICATIONS There are many variables that influence successful aging in the elderly African American female population. Health, social support, morale and its contributing variables of social activity, coping, and resilience are but a few. The United Sates model of health care, which values autonomy in medical decision making, is not easily applied to members of some racial or ethnic groups. Cultural factors strongly influence all patients' behaviors including reactions to serious illness and reactions to aging. It could be as simple as a contrast with regard to decision making. The U.S. emphasis on patient autonomy may contrast with preferences for more family-based, physician-based, or shared physician- and family-based decision making models evident among some cultures, or it could be as complex as culturally irrelevant tools used in research, irrelevant standardized health care plans or culturally incompetent health care providers. In any event, as this population grows the imperative to establish evidence to provide effective service for this rapidly increasing group becomes a priority. Although it appears that only a two-tiered approach to defining successful aging (one for healthy older adults and one for the frail or disadvantaged) would accurately fit the empirical realities of aging, the fact is that as the older population becomes increasingly diverse, the concept of successful aging may become even more difficult to define without expanding the number of models. One solution may be to accept the theme that successful aging is in the eye of the beholder. Subsequently successful aging may be best measured with indicators of subjective well-being such as life satisfaction, happiness, morale, contentment, perceived

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quality of life and new frameworks which will be specific to groups who have not yet been included in the existing theory. So, one can conclude that successful aging is not the same as attaining wealth or power. The components of successful aging may include but are not limited to: 1) good health, 2) low risk of disease or disability, 3) high mental and physical functioning and 4) an active engagement with life. There may be other factors yet to be revealed and it may be culture that facilitates the emerging values. when I come to the end of my journey wearied of life and the battle will be won carrying the staff and the cross of redemption he’ll understand and say well done Gloria Boseman PhD RN 2008

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REFERENCE Akoi,R., Ohno, Y., Tamakoshi, A., Kawakami, N., Nagai, M., Hashimoto, S., Sakata, K., Kawamura, T., Wakai, K.,and Senda, M. (1996). Lifestyle determinants for the social activity levels among the Japanese elderly. Archives of Gerontology and Geriatrics, 22, 271-286. Allison, M.J. (2004). Self-Efficacy Intervention Effect on Physical Activity in Older Adults. Western Journal of Nursing Research, 26,(1), 31-46. Allen, K.R., and Chin-sang, V. (1990). A lifetime of work: The context and meanings of leisure for aging black women. Gerontoligist, 30 (6), 734-740. Angus, J. (2006). Ageism: A Threat to "Aging Well" in the 21st Century. Journal of Applied Gerontology, 25(2), 137-152. Anthony, J.S. (2007). Self-advocacy in health care decision-making among elderly African Americans. Journal of Cultural Diversity, 14 (2), 88-95. Atchley , R.C. (1972). The social forces in later life: An Introduction to social gerontology. Wadsworth, Belmont: California. Austin, C. D. (1991). Aging well: What are the odds? Generations, 15(1), 73-75. Bandura, A. (1982). Self-efficacy: Mechanisms in human agency. American Psychologist, 37(2), 122-147. Black, H. K. (1999). Life as gift: Spiritual narratives of elderly African-American women living in poverty. Journal of Aging Studies, 13 (4) 441-455. Block, J., and Block, J., (1980). The role of ego control and ego resiliency in the organization of behavior. In W.A. Collins (Ed.), Minnesota Symposia on Child Psychology, 13, 39-101 Hillsdale,N.J.: Erlblaum. Boseman, G., (2000). Correlates of Morale in Elderly African American Women Unpublished dissertation.

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Byrd, Lisa. (2006). Health Disparities Affecting Minority Elderly Populations Selection from: NCGNP 2006: Highlights of the National Conference of Gerontological Nurse Practitioners 25th Annual Meeting. Carter, J., (1984). Psychosocial aspects of aging: The black elderly. Journal of the National Medical Association, 76(3), 271-279. Chatters, L. M. Taylor R..J.. Jackson J.D. Lincoln K.D. (2008). Religion in the Lives of African Americans. Journal of Community Psychology, 36 (3), 371-386. Creecy , R. F., and Wright, R. (1979). Morale and informal activity with friends among black and white elderly. Gerentologist, 19(6), 544-7. Cummings, H., and Henry, W.E. (1961). Growing Old: The process of disengagement. New York: Basic Books. Cummings, E., Dean,R., Newell, D.S., and McCaffrey, I. (1960). Disengagement, a tentative theory of aging. Sociometry, 23, 23 - 25. Daly, A., Jennings, J., Beckett, J.O. and Leashore, B.R. (1995). Effective coping strategies of African-Americans. Social Work Journal of the National Association of Social Worker, 40 (2), 240-8. Deimling, G., Harel, Z. and Noelker, L. (1983). Racial differences in social integration and life satisfaction among aged public housing residents. International Journal of Aging and Human Development, 17(3), 203-212. Dyer, C.B., Goodwin, J.S., Pickens-Pace, S., Burnett, J. and Kelly, P.A. (2007). Self-neglect among the elderly: A model based on more than 500 patients seen by a geriatric medicine team. American Journal of Public Health, 97(9), 1671-6. Dyer, B. Pickens, S and Burnett, J. (2007). Vulnerable Elders: When It Is No Longer Safe to Live Alone. JAMA, 298(12): 1448 - 1450. Dunkel-Schetter, C.,Folkman,S., and Lazarus,R.S.,(1987) Correlates of social support receipt. Journal of Personality and Psychology, 55, (1), 71-80. Durkheim, E., (1951). Suicide. New York : Free Press. Edmonds, M. (1989). The health of the aged black female. In Jones .R. (Ed.), Black adult development and aging. California: Cobb and Henry Publishers. Edkert, D. J. (1986). The busy ethic: Moral continuity between work and retirement. The Gerentologist, 26,(3), 239-244. Fraser, J. Richman, M. Galinsky M. J. (1999). Risk, Protection, and Resilience: Toward a Conceptual Framework for Social Work Practice. Social Work Research, 23. Gibson, R. C. (1995). Promoting successful and productive aging in minority populations. In Bond, L. A., Cutler, S. J., Grams, A. (Eds.) Promoting successful and productive aging Pages 279-288. Thousand Oaks, CA: Sage. Greene, B. (1992). Still here: A perspective on psychotherapy with African-American women. In Christen, J.C. and Howard, D. et al, New Directions in Feminist Psychology. Practice Theory and Research. Springer Series: Focus on Women 13. Greene, B. (1996) African-American Families: A legacy of vulnerability and resilience. National Forum, 75 (3) p.29-32. Havinghurst, R.S., (1961). Successful aging. In R.H. Williams, C.Tibbits and W. Donahue (Eds.), Process of Aging. New York: Atherton Press. hooks, b. (1981). Ain’t I a woman? Black women and feminism . Boston: South End Press. hooks, b. (1984). Feminist Theory: From Margin to Center Boston: South End Press

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Jackson, J.S. (Ed.). (1988). The Black American Elderly: Research on Physical and Psychosocial Health. New York: Springer. Johnson, R. and Wolinsky, F.D. (1994) Gender, race and health: The structure of health status among older adults. The Gerontologist , 34 ,(1) ,24-35. Kirchman, M.M., and Schulte, K. (1989) A study of morale in the elderly. Physical and Occupational Therapy in Geriatrics,7, (4), 29-41. Kutner, B., Fanschel, D., Togo, A. and Langner, T.S. (1956). Five hundred over sixty. New York : Russel Sage. Larson EB, Imai Y. (1996). An overview of dementia and ethnicity with special emphasis on the epidemiology of dementia. In: Yeo G, Gallagher-Thompson D, eds. Ethnicity and the Dementias (pp. 9-21). Washington, D.C.: Taylor and Francis. Lawton, M. .P. (1972). The dimension of morale. In D. Kent ,R. Kastenbaum, and S.Sherwood (Eds.). Research, planning and action for the elderly. New York: Behavioral Publications. Lawton, M. .P. (1975). The philadelphia geriatric center morale scale: A revision. Journal of Gerontology, 30 (1), p.55-59. Lazarus, R. S. (1966). Psychological stress and the coping process. New York: McGraw Hill. Lazarus, R. S. (1981). The stress and the coping paradigm . In C. Eisodofer, D., Cohen, A., Klienman P., and Masim, P. (Eds.), Models for clinical psychopathology (pp 177-214) New York: Spectrum. Lazarus, R.S., and Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer. Lemon, B.W., Bengston, V. and Peterson, J.A. (1972). An exploration of the activity theory of aging: Activity types and life satisfaction among in-movers to a retirement community. Journal of Gerontology, 27 (4) p.511-523. Maddox,G..L. (1963). Activity and morale: A longitudinal study of selected elderly subjects. Social Forces 42, 163- 170. Manheimer, R. J. (1994). Life enrichment opportunities. Unpublished paper. McCrae, R.R. (1984). Situational determinants of coping responses: Loss, threat, and challenge. Journal of Personality and Social Psychology, 46, 919-928. Outlaw, F. (1993). Stress and coping: The influence of racism on the cognitive appraisal processing of African-Americans. Issues in Mental Health Nursing, 14,399-409. Palmore, E. (1983). Cross - cultural research: State of the art. Research on Aging, 5 (1), 4551. Porter, X., and Villaruel,Q. (1993). Nursing research with African American and Hispanic people: Guidelines for action. Nursing Outlook , 41 (2), 59-67. Rowe, J.W. and Kahn, R.L. (1987). Human aging: usual and successful. Science, 237(4811), 143-149. Sullivan, W. P., and Fisher, B. J. (1994). Intervening for success: Strengths-based case management and successful aging. Journal of Gerontological Social Work. 22, 61-74. Suzeanne, B., Pitts, R. E., and LaTour, M. (1993). The appropriateness of fear appeal use for health care marketing to the elderly: Is it OK to scare granny? Journal of Business Ethics, 12(1), 45-55. Tangri, S. S., Thomas, V.G., Mednick, M.T., and Lee, M.T. (2003). Predictors of Satisfaction Among College-Educated African American Women in Midlife. Journal of Adult Development, 10 (2), 113-125. Vaillant, G. (1977). Adaptation to life. New York: Little, Brown and Co.

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Wagnild, I. and Young, M. (1990). Resilience among older women. Image: Journal of Nursing Scholarship, 22 (4), 252-255. Wagnild, I. and Young, M. (1993). Development and psychometric evaluation of the resilience scale. Journal of Nursing Measurement, 1(2), 165 - 178. Weaver, G.D., and Lawrence, E. (1996). Correlates of health care behavior in older African American adults: Implications for health promotion. Family and Community Health, 19(2), 43-57. Williams, J.H., Tibbit, C., and Donahue, W. (1980). Process of aging.social and psychological perspectives. Vol. II. New York: Arno Press.

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Chapter 5

IMPROVING THE HEALTH OF AFRICAN AMERICAN WOMEN Maisha Amen and Basirah Taha

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ABSTRACT Today, African American women experience disparate rates of heart disease, diabetes, and some forms of cancer. Many have become frustrated with what modern medicine has to offer. Integrative medicine provides an opportunity for African American women to become empowered, resilient, and partner with health care providers to improve their health. In 2002, about 62 percent of American adults—including 40 percent of women— used some sort of complementary and alternative medicine (CAM), everything from prayer to deep breathing to chiropractic, yoga, massage and nutritional approaches. Even if you take prayer out of the picture, one out of three people in the United States still used some form of CAM. And most paid for it themselves, since much is not covered by insurance. By the late 1990s, Americans were spending an estimated $270 billion a year out of pocket for CAM therapies, about as much as they spent on conventional medical approaches. The use of CAM appears to cross not only gender, but also age, racial and ethnic boundaries. An AARP telephone survey of more than 1,500 adults ages 50 and older conducted in late 2006 found that nearly two out of three reported using some form of CAM. If you include prayer in the definition of CAM, about 60 percent of Asians and Latinos, and 71 percent of African Americans use CAM. Integrative medicine—the use of both conventional and CAM approaches —means using the best of both, conventional established medical practices and traditional complementary and alternative modalities. This chapter provides relevant material for a qualitative study to examine the experience of African American women with integrative medicine and its influence upon their health status. This is particularly important since it will provide valuable insight into their values, lifestyles and health beliefs, all of which are important in providing quality health care.

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CASE STUDY Nia is a 58 year old married African American female mother of 6six. She and her husband have been married 35thirty five years. They are both educators and would be considered soundly middle class. Her children range in age from 32 to 13 years. Only the thirteen year old remains in the family home. She has owned her own home for thirty30 years. She is well known and respected in the community. She prides herself on being a good caretaker of her nuclear and extended family, friends, and neighbors including those who would not be found desirable by the community at large. Nia does not subscribe to any organized religion but believes in a divine entity and identifies herself as a spiritual and righteous person. Nia is privileged to be well traveled, well read, and knowledgeable of world history, the history of western civilization, as well as African American (AA) history. She is able to articulate with aplomb the travesties experienced by AA, though she would never presume to hold anyone else responsible for the success or failure of her choices. Nia was referred by a colleague for psychotherapy related to job stress. On examination it was discovered that Nia was in fact stressed to the extent she met criteria for Generalized Anxiety Disorder per the DSM-IV-TR. Per her medical history she is also diagnosed with hypertension, hypothyroidism, mitravalve prolapse, and irregular heart beat with inefficient profusion. She is fifty pounds over recommended weight. She has in the past been treated by a primary care physician, a cardiologist, and an endocrinologist. She is able to verbalize the dire consequences of failing to manage these chronic illnesses but readily admits that her participation in organized health care is crisis driven and upon resolution of the immediate concern she withdraws from treatment. Nia is not currently engaging any organized health services but does consult literature on CAM to address immediate health concerns. Nia is not alone. We hypothesize that her actions or lack there of flow from a set of beliefs and values that neither she nor the society at large fully understand.

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INTRODUCTION Many of the chronic medical conditions that are experienced are directly related to lifestyle. Many African American women are experiencing excessive psychological, environmental, and financial stress. These factors in conjunction with poor dietary habits (using food to soothe) and lack of exercise on a regular basis result in seventy-seven percent of AA women being overweight or obese. Obesity is defined as having a BMI [body mass index] > 29.95 kg/m2. Fifty percent of AA women are in the obese range of BMI > 30, fifteen percent of AA women have a BMI > 40 considered the class III or “extremely obese range (Shiriki, 2005). The higher rates of obesity observed in AA women is seen at all levels of typical socioeconomic status SES indicators, such as education and income (Winkley, Kraemer, Ahn, and Varady, 1998). This is a stark exaggeration of overall U.S. statistics which identifies fifty percent of all women as overweight and thirty three percent as obese. Despite improvements in the diagnosis, treatment, and prevention of disease many women and their dependents residing in urban areas continue to experience disparities in health. African-American women particularly suffer disproportionate disparities many of which could be prevented by lifestyle modifications, routine health examinations and medical

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follow up. African American women experience higher rates of obesity, heart disease, diabetes, sexually transmitted disease, certain forms of cancer, and stress related mental health disorders. This is true even after controlling predictors such as education, socioeconomic status, health beliefs, access to healthcare, and the cultural competence of health care providers. It is evident that other factors are in play. We suggest the missing factors may be the African American woman’s philosophical beliefs regarding the value of her health, the best methods of protecting her health, and her inimitable position as an autonomous agent responsible for the legitimacy of her choices.

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THE POWER OF BELIEF Black women’s actions are determined by their beliefs. Beliefs are considered by the holder as axiomatic and as such the validity is rarely questioned. In fact, beliefs are social constructs developed to make sense of reality and are directly impacted by experience and environment. Beliefs determine what we perceive, how we evaluate it, and how we respond. In the past, health strategies have emerged from a paradigm which places emphasis on the self as primary and the other as peripheral. In traditional AA culture the group is primary; “I am because we are.” I take care of you and myself because we are “one.” According to Yacine, Badian, and Kouyate (2006), African people believe that factors important to health and healing include the following: positive thoughts which are an extension of one’s language, life affirming relationships, and a nurturing environment/community are paramount. “Joy” is to allow ones soul to be healed. A joyful state is when the body, mind and spirit are connected to the universal energy. There is a balance that must be maintained within the larger context of being which includes the self, community, and the spirit. This differs from traditional western thought which defines health as the absence of disease. The primacy of self, family, and community are indistinguishably one and are considered no more important than the other. The belief that the self is less important than the other is a relatively recent phenomenon and may have been developed to facilitate group survival during extremely harsh conditions. At some point during African Americans’ sojourn in America they eliminated themselves from the circle, posited themselves as the keeper of circle, but no longer the keeper of themselves. This is not articulated but experienced in ways intangible even to authors of this chapter and consequently is almost never conveyed to health care providers even those who share the same ethnicity and culture. Authors of the chapter propose that a preventive health model will permit the AA woman to tap into an ancient wisdom and manner of being, regarding her value and strengths in relation to her environment. During AA women’s harshest reality several factors promoted participation in their own medical care. These factors include: 1) lack of access to formal health care, 2) extensive health problems caused by harsh living and working conditions, 3) the scarcity and relative high cost of formally trained physicians, 4) a lack of confidence in White medicine, 5) an enduring confidence in folk and traditional West African medical practices, and 6) a commitment to self-reliance (Byrd and Clayton, 2000). Traditionally, if Whites provided medical care for AAs, it was generally of low quality and quantity

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(Fontenot, 1994). Faced with these and other unattractive alternatives, many slaves took their medical care into their own hands (Fontenot, 1994).

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LOOKING BACK TO MOVE FORWARD

Authors of this chapter believe a prevention model that respects and adheres to integrated, holistic, evidenced based healthcare while being sensitive to the philosophical determinants of behavior will recognize AA women as entities not unto themselves but as extensions of their relationships and environment, and in doing so will do much to obliterate health disparities suffered by this population. It is also imperative that health care team members consider the Sankofa symbol as it depicts a mythical bird which holds an egg symbolising the future in its beak. The bird moves forward while looking back to the past. This suggests that one must return to the past in order to move forward. The message of the symbol is that we must learn from the past in order to build a better future. Many slaves were not passive recipients of White medical care or lack thereof. There is considerable evidence that they were active participants in providing and caring for themselves and their own people (Convey, 2007). A remark from the slave narratives “Oh, de people didn’t put much faith to de doctors in dem days,” and then added, “mostly, de would use de herbs in de fields for de medicine.” Historical sources abound with references to slave midwives, grannies, herb doctors, root doctors, spiritual healers, folk healers, spiritualist, conjurer doctors, hoodoo practitioners, and formally trained AA physicians. Traditional AA practitioners embraced medical strategies from European, Native American, Caribbean, and African medical folklore and incorporated their own ideas on how to address medical concerns (Covey, 2007). The spiritual aspects of healing were also incorporated into the care rendered. Spirituality, family, herbs and plants, and beliefs played an important role in West African healing arts that were brought with Blacks to America. African medical practices were based on ritual and spirituality. Slaves brought with them the knowledge of cesarean sections, midwifery, a method of small pox inoculation, and other effective practices. Not all practices were effective and many had to eventually be discontinued. However, “plantation medicine forced the survival of AA folk/traditional medicine,” that is relied upon today. Prevention and alternative medicine is more in keeping with AA traditions and is by definition less intrusive than the traditional model where the doctor is the “powerful other and the authority on health and wellness.” Authors of this chapter propose a model that transfers control from the healthcare provider to the seeker of health. The model encourages a philosophical paradigm shift that allows AA women to again embrace their position as integral to the whole and as such fosters better health choices. Preventive and complementary health measures provide an opportunity for African American women to reclaim their position as definers of and protectors of the health of themselves, their families, and by extension their communities. AA women will become empowered to partner as equals with health care providers to improve their health and resilience. Preventive measures that would

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advance positive outcomes include abstinence from high risk behaviors, improved nutrition, increased physical activity, maintaining regularly scheduled preventive health visits (Table 1), early detection and intervention to prevent heart disease, stroke, and diabetes. It is imperative that AAs return to being active participants in defining and determining their health and wellbeing. Table 1. Preventive Interventions - Screening tests, counseling interventions as recommended by the United States Preventative Services Task Force Disease High Blood Pressure

Screening Test Blood Pressure Check

When/How Often -Age > 21 -Check every 1-2 years

High Cholesterol

Cholesterol level -HDL -LDL

-Men 35-65 years old; -Women 45-65 years old. -Screening should be every 5 years.

Breast Cancer

-Self Breast Exam -Physician Bbreast Eexam -Mammogram

Cervical Cancer

Pap Ssmear

Colon Cancer

-Stool Ooccult Bblood Ttest -Sigmoidoscopy Glucose (sugar) Llevel in Bblood

-Mmonthly, same time each month -Aannually (age 40+) -Eevery 1-2 years (ages 50-69); continue every 1-3 years if appropriate -Annually until 3 negative exams, then every 2-3 years. -Annually after age 50 -Every 3-5 years after age 50 -Periodically in high risk.

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Diabetes

Obesity

Hheight/Wweight

-Annually

Glaucoma

Eye Eexam by Oophthalmologist

-Periodically after age 65

Comments High blood pressure contributes to increased risk of heart disease and stroke. Heart disease remains the greatest killer of African American women. The death rate for stroke is 34% higher for Black females than White females.

May decrease frequency or discontinue after ages 6569.

One out of every four Bblack women over the age of 55 suffers from diabetes. Diet, exercise, weight loss and medications can control diabetes. Approximately 60% of African American women are overweight. Obesity contributes to heart disease, diabetes, stroke, arthritis, depression endometrial, breast, and prostate cancers.

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Maisha Amen and Basirah Taha Table 1. (Continued)

Prophylaxis/Counseling Exercise

Diet Tobacco (avoidance/cessation)

Aerobic and resistance as tolerated. Thirty minutes or more of walking or other weight bearing exercise for most days of the week recommended. Prevents heart disease, high blood pressure, obesity and other diseases. Limit saturated fat and cholesterol. Emphasize high fiber. Calcium supplementation for postmenopausal women. 23% of Black women smoke. Smoking causes heart and lung disease.

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INTEGRATING THE BEST OF BOTH WORLDS The use of complementary and alternative medicine (CAM) appears to cross not only gender, but also age, racial and ethnic boundaries. An AARP telephone survey of more than 1,500 adults ages 50 and older conducted in late 2006 found that nearly two out of three adults reported using some form of CAM (AARP and NCCAM, 2007). If you include prayer in the definition of CAM, about 60 percent of Asians and Latinos, and 71 percent of African Americans use CAM (Barnes, et al., 2002). In 2002, about 62 percent of American adults—including 40 percent of women used some sort of CAM, everything from prayer to deep breathing to chiropractic, yoga, massage and nutritional approaches was reported (Upchurch, Chyu, Greendale, et al., 2007). Even if you take prayer out of the picture, one out of three people in the United States still used some form of CAM (Barnes, Powell-Griner, McFann, Nahin, 2002). There are a variety of practitioners of complementary health (Table 2). By the late 1990s, Americans were spending an estimated $270 billion a year out of pocket for CAM therapies, about as much as they spent on conventional medical approaches (Eisenberg, Davis, Ettner, et al., 1998). Most services are not covered by insurance and national studies find that about 60 percent of those using CAM say they've never discussed it with their doctors (Eisenberg, Kessler, Van Rompay, 2001). There is an inherent danger in applying preventive methods without notifying all treating health care providers. Many of the herbs, supplements and other CAM treatments utilized could have unsafe interactions with conventional therapies, particularly pharmaceutical medications. For example, garlic if taken on a regular basis may increase the strength of aspirin and the drug Warfarin, which is used to prevent blood clotting. The herbal supplement St. John’s wart can also mix with prescription antidepressants and increase the medication’s effect. "People who are using CAM need to talk to their health care providers," said Richard Nahin, PhD, the Senior Advisor for Scientific Coordination at the National Center for Complementary and Alternative Medicine (NCCAM). Integrative medicine—the use of both conventional and CAM approaches —doesn't mean parallel health care approaches, he said. "It means doing everything together (Pappas, and Perlman, 2002)." Integrative medicine—the use of both conventional and CAM approaches —means using the best of both, conventional established medical practices and traditional complementary and alternative modalities.

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Table 2. Who's Who in Complementary and Alternative Medicine Practitioner

Training

Licensure required

Services provided

Integrative Mmedicine Typically an MD or DO* (doctor of osteopathy). Medical license from the state. Should be Sspecialist Completed conventional medical training including board certified in their specialty (internal four years of medical school followed by medicine, OB/GYN, family practice, etc.). internship.

A combination of conventional and alternative medicine.

Naturopathic Ddoctor (ND)

Traditional four-year undergraduate school followed by training at one of the five naturopathic schools accredited by the Council on Naturopathic Medical Education.

Fewer than 20 states license naturopaths. Still, look for an ND who passed the Naturopathic Physicians Licensing Examination, or NPLEX.

Naturopaths are trained in a variety of areas, including homeopathy, herbal therapy, bodywork, chiropractic, aromatherapy and acupuncture. A naturopath's practice is limited by "scope of practice" rules in states that license them.

Traditional Chinese Medicine (TCM)

Traditional four-year college, then another three years of intensive training at an accredited TCM program. Look for practitioners certified by the National Certification Commission for Acupuncture and Oriental Medicine (NCCAOM) in acupuncture, Chinese herbology, and/or Oriental bodywork therapy.

Most states require a license to practice Herbal therapies, acupuncture and acupuncture, but training requirements are Oriental bodywork (tai chi, etc.). generally minimal. While some states have separate boards of acupuncture or Oriental medicine, others oversee these specialties via the board of medical examiners.

Chiropractor

Traditional four-year undergraduate and then trained at one of 14 U.S. chiropractic colleges accredited by the Council on Chiropractic Education.

Must be licensed in all states pass the National Board of Chiropractic Examiners' standard national certification examination.

Provides spinal manipulation for musculoskeletal injuries.

Massage Ttherapist

Should have graduated from a program accredited by the Commission on Massage Therapy Accreditation or from a school that is a member of the American Massage Therapy Association.

Most states license massage therapists. Massage therapists must also pass the National Certification Board of Therapeutic Massage and Bodywork certification exam; maintain continuing education credits; and hold malpractice insurance.

Various types of massage and reflexology. Some massage therapists also specialize in aromatherapy.

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Table 2. (Continued) Practitioner

Training

Licensure required

Homeopathic physician

Training varies significantly. Look for an MD or DO Just a handful of states license who is also board-certified through the American homeopaths. Board of Homeotherapeutics or for an ND.

Mixes and prescribes homeopathic remedies, most of which are considered over-the counter drugs. Homeopathy is based on the theory that "like treats like," so homeopathic remedies contain minute amounts—of a compound related to the medical condition itself.

Biofeedback specialist

Varies. Look for those certified by the Biofeedback Certification Institute of America in their specialty area.

Teach methods of learning to consciously control unconscious physical processes such as slowing brain waves, blood pressure, etc.

Some states require practitioners to be licensed psychologists, nurses or other medical professionals.

Services provided

*An osteopath receives the same training as an MD. The main difference is that osteopaths attend a college of osteopathic medicine and receive extra training in the musculoskeletal system (nerves, muscles and bones) so they can better understand how an injury or illness in one part of the body affects other parts. They also receive variable amounts of training in the manual manipulation of the musculoskeletal system.

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This chapter proposes the use of qualitative research methods to examine African American woman’s philosophical attitude regarding the value of her health, the best methods of protecting her health, and her unique position as a self-determining agent responsible for the authenticity of her choices is essential. The Rresearch is needed er’s aim is to identify social, economic, ethno-cultural/racial and organizational factors that affect the utilization and outcomes of services for African American women. This is particularly important since it will provide valuable insight into their values, lifestyles and health beliefs, all of which are important in providing quality health care.

LITERATURE REVIEW

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African American Women’s Use of Preventive Health Care Services There have been many studies that have explored African American women’s use of preventive health care services. Researchers, Brown, Naman, Homel, Fraser-White, Clare, and Browne, (2006) measured the extent of health knowledge and preventive behaviors of African-American and Afro-Caribbean women in New York City. Their findings indicated that despite a high level of knowledge about risk factors and symptoms for several common diseases, a large percentage of the sample engaged in high-risk behaviors. It was found that having a regular doctor was the most consistent predictor of the use of preventive care, irrespective of the women's racial/ethnic background, socioeconomic circumstances, or place of residence (Llewellyn, Cornelius, Smith, 2001). Even today, access to health care is still facilitated by having health insurance. In a study of 61 AA women, mean age 50, who had hypertension and were physically inactive, Martin, Person, Kratt, Prayor-Patterson, Kim, Salas, and Pisu, (2008) utilized the Trans-theoretical Model to understand barriers to physical activity among AA womenand found three correlates associated with self-efficacy. Women confident in overcoming barriers reported less worry about physical activity. Women who reported that they were reluctant to become physically active also reported less confidence in ‘making time’ for activity. Items on the aversiveness scale were: ‘‘lack of interest in physical activity,’’ ‘‘physical activity is boring,’’ ‘‘physical activity is hard work.’’ and ‘‘I do not enjoy physical activity,’’ These finding highlight the role of emotion and affect in physical activity behaviors and supports prior research (McAuley, Jerome, Elavsky, Marquez, and Ramsey, 2003) in which enjoyment of physical activity was positively correlated with physical activity behavior in African American women. AA women who find activity more aversive may not find time to be active. Martin et al. also noted that cConfidence to 'stick with' physical activity was associated with the ability to self-reevaluation (i.e., reflection on how personal values correspond to specific behaviors such as physical activity). Social support and competing demands were not associated with self-efficacy. Cherrington, Corbie-Smith, and Pathman, (2007) assessed more than 4,000 individuals' (37% AA) beliefs whether about the advisability of periodic health examinations, and whether their beliefs contributed to the likelihood that they would receive recommended clinical preventive services (). Males, younger participants, Whites and those without health insurance were more likely nNot to endorseing periodic examinations. was more common

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among subjects who were male, younger White and had no health insurance. Compared to those who endorsed periodic examinations, Ppersons who did not endorse periodic examinations were less likely to have had a periodic examination or mammogram in the previous year, a Pap smear in the past 3 years, a cholesterol check within the last 5 years or to ever have had an endoscopic screening, compared to those who endorsed periodic examinations. Fallon, Wilcox, and Laken, (2006) sought to 1) determine the rate of participant-reported health care provider advice for healthy lifestyle changes among African Americans in the following three areas: who do not meet recommendations for a) physical activity, b) fruit and vegetable consumption, and c) healthy weight; 2) examine correlates that affectof health care provider advisory ratces; and 3) assess the relationshipassociation between providers’ advice and participants’ stage of readiness tofor change for each of these health behaviors specific to physical activity, fruit and vegetable consumption, and healthy weights. Findings indicated that of the 572 participants, (407 women and 165 men) participant-47% reported getting provider advice tofor lifestyle changes was 47.0% for physical activity, 38.7% were told to consume more for fruit and vegetables consumption, whileand 39.7% were advised about theirfor weight. Correlates that were associated with the providers giving advice about physical activity were co-morbiditiesA greater number of diagnosed diseases and increased higher body mass index. were independently associated with receiving advice to increase physical activity. In addition, if the participant reported aA more advanced readiness stage- of -change and a greater number of diagnosed diseasesco-morbidities, it was reported that the provider were independently associated with receiving advisced for fruit and vegetable consumption. An increased bBody mass index, readiness stage- of- change, and poorer perceived health status waswere independently associated with getting receiving advice about weight. These findings are disruptive as it appears that less than half of the participants of Fallon and colleagues (2006) study received advice from their health care provider to live a healthier lifestyle, and when the advice was given it was only given after disease progression and multiple disease diagnoses. Moreover, the participant’s readiness to change seems to influence the providers’ rate of advising the need to live a healthier lifestyle. This finding suggests that for those African Americans who do not show a readiness to change are at increased risk of not receiving advice. Research that examines values and methods to protect ones health are among AA women. The scope of racial/ethnic disparities in the use of preventive services in the elderly was assessed, and the impact of the type of health insurance coverage on the use of preventive services was studimeasured by Chen, Diamant, Pourat, Kagawa-Singer, (2005). Results indicated that African AmericansBlacks and Latinos were significantly less likely to receive influenza be vaccinesated for influenza, and Asian Americans were significantly less likely to obtainget a mammogram compared to Whites, while controlling for other explanatory factors. Moreover, those with Medicare plus Medicaid coverage were significantly less likely to take advantage of vaccines, and cancer screeninguse all four preventive services compared to those with Medicare plus private supplemental insurance. Chen et al (2005) surmised that African Americans’ resistant attitudes and beliefs toward vaccination explain, in part, the low vaccination rates within this group. However, Chen et al. did not provide qualitative evidence that this is the case. Investigations are needed that tap into the AA women’s choices. It is also important to learn whether insurance is a major factor

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for AA women as they act as self-determining agents responsible for the authenticity of their preferences.

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Patient Participation in Their Care The important role of patients as active participants in clinical encounters has been emphasized. Patient education increases patient compliance. Education enhances the patient’s ability to ask appropriate questions and have them answered, communicate with the provider when instructions are not understood, and becoming an active participant in decision-making (Korsch, 1984). The review of the literature indicates that the African American women’s philosophical mind-set, subsequent beliefs, and responses regarding the value of her health, the best methods of protecting her health, and her position as a sovereign entity responsible for her health choices warrants further scientific inquiry. In summary, Brown, Naman, Homel, Fraser-White, Clare, and Browne’s, (2006) study suggests that AA women take part in high-risk behaviors despite their high levels of knowledge, and regardless of race, and women who have a regular doctor are more likely to use of preventive care (Llewellyn, Cornelius, Smith, 2001). Martin, Person, Kratt, PrayorPatterson, Kim, Salas, and Pisu’s (2008) findings reveal some understanding highlight the importance of barriers to including diverse measures of self-efficacy in physical activity amongstudies for AA women, while Cherrington, Corbie-Smith, and Pathman, (2007) findings suggest that even for AA women, belief in the value of periodic health examinations is associated with the use of clinical preventive services. In addition, Fallon, Wilcox, and Laken, (2006) participants report that health care providers’ soldomly adviceAfrican Americans offor healthy lifestyle changes is low among African Americans. Finally, the findings from Chen, Diamant, Pourat, Kagawa-Singer’s (2005) study reveals that racial disparities in the use of preventive services among the elderly African Americans’ mind-sets interfere with the use of preventive servicespersists in the United States. Chen et al contribute African Americans’ resistant to their attitudes and beliefs as part of the explanation for the low immunization rates among this group. Collectively these studies suggest that a philosophical approach is needed to 1) explore AA women’s value of their health, 2) understand their perception of the best way they can protect their health and 3) describe the AA women’s unique position as a self-determining agent?

CONCEPTUAL FRAMEWORK The theoretical framework that lays the foundation for this work is Existentialism which is a philosophical attitude described by Heidegger (1962), Jaspers (1968), Marcel (1968) and Sartre. Heidegger (1962) inquired about the “being that we ourselves are”. He introduced the notion that existentialist thinking questions the tension between the individual and the public. He also introduced authenticity as the self-identity norm, linked to a self-definition project through freedom, choice, and commitment”. Jaspers (1968) term “Existenz” supports a forum for ongoing work, both from a historical, scholarly nature. Existenz has aand of more

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systematic focus which was derived from classical existentialism. As a method of philosophical inquiry that introduced authenticity, for understanding what it means to be human, existentialism plays an important role in contemporary thought. Existentialism is opposed to rationalism and empiricism; it stresses the individual’s unique position as a self-determining agent responsible for the authenticity of his or her choices. As described by Jaspers, “Existenz" designates the indefinable experience of freedom and possibility. Existenz is an experience which constitutes the authentic being of an individual. What is meant by “authenticity is that in acting one should act as oneself, not as one or any other essence? Authenticity involves letting one’s actual values come into play where one makes a choice, so that one also takes responsibility for the act instead of choosing either-or without allowing the options to have different values” (Stanford encyclopedia of philosophy). In contrast, the “inauthentic is the denial to live in accordance with one’s essence. This can take many forms, from pretending choices are meaningless, or random, through convincing oneself that some form of determinism is true, to a sort of “mimicry” where one acts as one should (i.e., nurse) acts. This image usually corresponds to some sort of social norm (Stanford encyclopedia of philosophy).

STUDY PURPOSE

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This chapter lays out the proposal to examine the African American woman’s philosophical framework regarding the value of her health, the best methods of protecting her health, and her interpretation of her position as a self-determining agent responsible for the validity of her choices in facilitating and maintaining health. The goal of this work is determine what factors encourage women to be proactive and to make decisions that enhance health and well being. The problem statement is proposed as: The existential beliefs of African American women’s influence their health choices, traditional, as well as, preventive and integrative health care. Research questions are outlined as: 1. How do you see yourself in the universe/worldview? 2. What do you think your value is, and what do you think you can achieve? 3. What experiences, including family, social, in the past do you think impact upon your health choices and how do you interpret them? 4. The wayHow do African women of African descent view themselves in relationship to their community? 5. How do you feel about your current health care, including provider? 6. What health beliefs do you hold that are intact, reinforced, or suspended during times of stress, pleasure, or pain? 7. Spirituality, can we pray our problems away? 8. Who controls/ determines your health and well being? 9. Proactive, when do you take the initiative to be and become healthy?

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The suggested methodology of the study is to use qualitative methods including participant observations and interviews to describe more fully the African American women’s philosophical attitude regarding the value of her health, the best methods of protecting her health, and her unique position as a self-determining agent responsible for ther health. Qualitative methods were chosen to capture the holistic and contextual descriptions of participants of their experiences and to gain their perceptions of events as they occurred within a naturalistic setting (Lincoln and Guba, 1985).

DISCUSSION

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The degree to which we value our existence is reflected in our health decisions and ultimately effect the length and quality of our lives. African American women continue to experience disparate rates of morbidity and mortality despite advances in the health sciences and improved access to health care services. Better understanding of the factors that determine health decisions in this population must be identified, explored and addressed. If not, AA women will continue to suffer disproportionately and the larger society will share in that suffering in the baring of the burden of ever increasing health care costs due to of an ineffectual health care system. Inarguably AA women have a legacy of being consummate survivors. This knowledge and ability grew out of near insurmountable adversity and has become a part of their collective consciousness. It is lived not spoken, not examined, and not challenged. It has been suggested by modern scholars that these adaptive abilities and mechanism used in the past may now be detrimental and require revision to accommodate a new reality (Leary, 2005). A revised set of beliefs that reestablish the care of self as an essential part of the care of the other and the survival of the group is needed. A tool well suited to the AA woman’s quest for health is preventive and integrative health care. It correctly posits the power of wellness within her control. The proposed paradigm accepts the mind body correlation and is conducive to the development of cognitive strategies that facilitate health maintenance, the prevention of disease and untimely death. A preventive and integrative health care model mandates lifestyle modifications, including abstinence from high risk behavior, healthy nutritional habits, regular exercise, stress reduction, routine health examinations and medical follow up.

REFERENCES AARP and NCCAM. Complementary and Alternative Medicine: What People 50 and Older Are Using and Discussing with Their Physicians. AARP. Washington, DC. 2007. Barnes PM, Powell-Griner E, McFann K, Nahin RL. Complementary and alternative medicine use among adults: United States, 2002. Adv. Data. May 27 2004(343):1-19. Brown N, Naman P, Homel P, Fraser-White M, Clare R, Browne R. Assessment of preventive health knowledge and behaviors of African-American and Afro-Caribbean women in urban settings. J. Natl. Med. Assoc. 2006 Oct; 98(10): 1644-51.

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Chen J, Diamant A, Pourat N, Kagawa-Singer M. Racial/ethnic disparities in the use of preventive services among the elderly. Am. J. Prev. Med. 2005 Dec;29(5):388-95. Cherrington A, Corbie-Smith G, Pathman D. Do adults who believe in periodic health examinations receive more clinical preventive services? Prev. Med. 2007 Oct;45(4):282-9. Covey, H. (2007). African American Slave Medicine; Herbal and Non-Herbal Treatments. Rowman and Littlefield:US. Eisenberg D, Davis R, Ettner S, et al. Trends in alternative medicine use in the United States, 1990–1997: Results of a follow-up national survey. JAMA. 1998;280:1569. Eisenberg D, Kessler R, Van Rompay M, et al. Perceptions about complementary therapies relative to conventional therapies among adults who use both: results from a national survey. Ann. Intern. Med. Sep 4, 2001;135(5):344-351. Fallon EA, Wilcox S, Laken M. Health care provider advice for African American adults not meeting health behavior recommendations. Prev. Chronic Dis. 2006 Apr;3(2):A45. Fontenot, W. (1994). Secret Doctors’: Ethnomedicine of African Americans. Westport: Bergin and Garvey. Gordon, L., 1997. Existence in Black: An Anthology of Black Existential Philosophy, New York: Routledge Heidegger, M., (1962). Being and Time. Tr. John Macquarrie and Edward Robinson. New York: Harper and Row Jaspers, K., 1968. Reason and Existenz. Tr. William Earle. New York: Noonday Press. Korsch, B. (1984). What do patients and parents want to know? What do they need to know? Pediatrics, 74, (5 PT 2), 917-919. Kouyate, B.Y. (December 26, 2006) Personal Conversation. [email protected]. Ladson-Billings, G (2002). Racialized Discourses and Ethnic Epistemologies. In D. Norman and Y. Lincoln (Eds.), Handbook of Qualitative Research (2nd ed) (pp.257-277). Thousand Oaks: Sage Publications, Inc. Leary, DeGruy, J. (2005). Post Traumatic Slave Syndrome: America’s Legacy of Enduring Injury and Healing. Uptone Press: Oregon. Llewellyn, C, Smith, P, and Simpson, G. What Factors Hinder Women of Color From Obtaining Preventive Health Care? Am. J. Public Health 2002 Apr; 92(4):535-39. Lincoln, Y. and Guba, E. (1985). Naturalistic inquiry. CA: Sage. Marcel, G., 1968. The Philosophy of Existentialism, New York: Citadel Press Martin M, Person S, Kratt P, Prayor-Patterson H, Kim Y, Salas M, Pisu M. (2008). Relationship of health behavior theories with self-efficacy among insufficiently active hypertensive African-American women. Patient Educ Couns. 72(1):137-45 McAuley, E., Jerome, G.J., Elavsky, S., Marquez, D.X., Ramsey, S.N. (2003). Predicting long-term maintenance of physical activity in older adults. Preventive Medicine ;37:110– 8. Pappas S, Perlman A. (2002). Complementary and alternative medicine. The importance of doctor-patient communication. Med. Clin. North Am. 86(1):1-10. Sawni-Sikand A, Schubiner H, Thomas R. (2002). Use of complementary/alternative therapies among children in primary care pediatrics. Ambul. Pediatr. 2(2):99-103. Shiriki, K. (2005). Obesity, Health Disparities and Prevention Paradigms: Hard questions and hard choices. Prev. Chronic Dis. [serial on line]. http.//www.cdc.gov/pcd/issues/2005.

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Stanford Encyclopedia of Philosophy. Access at: http://plato.stanford.edu/existialism. Upchurch D, Chyu L, Greendale G, et al. (2007). Complementary and alternative medicine use among American women: findings from The National Health Interview Survey, 2002. J. Women’s Health (Larchmt). 16(1):102-113. Winkleby M, Kraemer H, Ahn D, and Varady A. (1998). Ethnic and Socioeconomic differences in cardiovascular disease risk factors: findings for women from the Third National Health and Nutrition Examination Survey, 1998-1994. JAMA. 280(4):356-62.

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Chapter 6

PERCEPTIONS OF PERSONAL HEALTH OF CONTEMPORARY BLACK WOMEN Minnie Campbell

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ABSTRACT In recent years, health care literature has been replete with calls for cultural competency for health care providers and culturally appropriate strategies and interventions. Also, there has been increased interest in issues specifically related to women’s health. However, much of the literature that addresses the issue of culturally appropriate care for African Americans typically presents cultural information that does not differentiate between the beliefs of women and men and often excludes those from middle and upper middle socioeconomic groups. While it is true that African American men and women share experiences from a cultural perspective, African American women (AAW) have unique experiences that shape their perspectives on personal health and what it means to be healthy (ShambleyEbron and Boyle, 2004). Also, it has been suggested that a “womanist” theoretical approach, which takes into account the unique life experiences of AAW, be used when working with this population (Banks-Wallace, 2000; Shambley-Ebron and Boyle, 2004; Barbee, 1994). In this chapter a small number of African American women were asked to describe various aspects of their beliefs about health. The descriptions suggest that more exploration of how African American women perceive health is necessary.

INTRODUCTION From a historical view, literature related to African American culture has centered on beliefs derived from West African cultural roots related to life and the nature of being. This idea includes the notion that life is a process and one’s nature is an energy force. In addition, there is the belief that all things (living and dead) influence each other, thereby making one able to influence one’s destiny and that of others through proper knowledge and behavior (Jacques, 1976). West African cultures saw health as being in harmony with nature and illness as a manifestation of disharmony with nature from a variety of causes (Snow 1974, 1977,

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1978, 1983; Powers, 1982). Since good and evil were viewed as natural, the maintenance of balance between the two forces was the task of a cure. The goal of healers was to remove or contain the evil. Shambley-Ebron and Boyle (2004) point out that recent literature presents feminists paradigms as ways of understanding and organizing knowledge derived from the life experiences of women. The authors indicate that African American women indeed have unique viewpoints related to their history and position in society. The viewpoint of Black women is “shaped by their lived experiences during and after slavery and by their continuing struggle to resist oppression and assume a cultural identity in a sociopolitical system that often has differing and opposing values” (p.12). Furthermore, the authors state that the experiences of African American women must be studied and presented within the context of race, social class and gender. In 2000, Burkett analyzed the content of articles from three major medical journals (American Journal of Public Health, Journal of the American Medical Association and New England Journal of Medicine) published between 1989 and 1998. She found that explanations for illness and mortality among Black women were attributed to the individual behaviors of the women, while few addressed the context in which those behaviors occur (Taylor, 2001). Writing in the Journal of Black Psychology, Thomas (2004) provides an extensive view of the failure of social sciences to adequately study African American women. She notes that the life experiences of Black women have never fit neatly within the traditional boundaries of American society. Generally, in behavioral sciences, racism, sexism and classism have traditionally rendered those who are not members of the dominant group invisible and therefore nonexistent for the purposes of understanding and describing human behavior. In addition, Landrine and Klonoff (1992) state specifically about the area of health psychology, that in spite of recent research, still relatively little is known about cognitive representations of illness and how they contribute to overall health related schema. Hence, to the extent that those in healthcare use or refer to social sciences in their research related to patients’ attitudes, motivations, health beliefs, and practices it is not surprising that publications, related to the health of African American women, often submerge gender when ethnicity or culture alone are examined. Moreover, this same literature does not provide meaningful insight into the motivation behind the behavior. While many studies have included samples of Black women, for the most part, they explore health issues having strong negative health outcomes for Black women such as heart disease, cancer, HIV, Type 2 diabetes, or hypertension. Again, the focus is on behaviors relative to the health problems or associations between physical or biological characteristics of the health care issue under investigation, not the context of the behaviors or what understanding or life experiences have contributed to their conceptualization of health. According to Thomas, “Black women bring uniqueness to health care stemming from a historical legacy that continues to relegate them to membership in multiple oppressed groups”(p.286). She offers the following quote from Black female scholar Maya Angelou as a way of encapsulating the lived experience of African- American women: Black women whose ancestors were brought to the United States beginning in 1619 have lived through conditions of cruelties so horrible, so bizarre, the women had to reinvent themselves…They [Black women] knew the burden of feminine sensibilities suffocated by masculine responsibilities(p. 8) (p.286).

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As an example, Thomas explains that while racism is a major factor in the lives of Black women, it is mediated through the interconnectedness of gender, class, age, and other variables. She adds that sexism is also a significant element in the lives of Black women, but it too is mediated through other types of oppression related to race, class and sexual stereotyping. Clearly the experiences of Black women are intersectional and cannot be adequately explained with an isolated emphasis on either race or gender. In 1995, the Black Women’s Health Study (BWHS) was started for the purpose of investigating a myriad of health problems commonly observed among Black women (2008, December). Retrieved December 8, 2008, from http://www.bu.edu/bwhs/index.htm. The study, now in its thirteenth year, includes more than 50,000 African American women and has produced in excess of 100 research publications related to health issues affecting Black women. One study, reported by Hunt,Wise, Jipguep, et al. (2007) using data from the Black Women’s Health Study (BWHS) and the 2000 U. S. Census discovered that there is an inverse linear relationship between perceived racial discrimination and percent of Black populations in a community. In other words, as the percentage of Blacks in a community increase, the lower the perception of discrimination. While the researchers reference to “community” was that of a geopolitical entity, in this discussion the term “community” is viewed as any setting in which people gather for a common purpose. While racism for Black women may be mediated by other factors, it may also still play a major role in shaping attitudes and behaviors when social context is taken into consideration because, what transpires within a social context (lived experiences) contribute to perceptions. In some instances certain dimensions of the behavior of Black women closely resemble that of Black men while other dimensions may resemble behavior of White women (Patterson, 1998). For example, while African American women and men may share common cultural behaviors based on cultural values and common experiences such as respect for elders or celebration of life as part of funeral rites, the historical employment of African American women in domestic service tended to bring them into direct contact with the most intimate areas of the dominant culture (Patterson, 1998). This closeness to the dominant culture was often enhanced by another factor that is unique to all women and that is the ability, in most human societies, of women from different statuses and ethnicities to develop close relationships. To the extent that humans learn behaviors from other humans, African American woman would have learned behaviors common among White women, so it ought to be expected that Black and White women have some behaviors in common. This is in contrast to the separateness of men and their inability or unwillingness to develop close relationships with other men (Patterson. 1998). Still, in other instances, the behavior of Black women will neither look like that of Black men nor White women. Thus, Thomas suggests that from this we may surmise that femaleness and Blackness are differently articulated across the various intersections of factors that influence the lives of Black women, such that neither gender nor race has “independent centrality” in the lives of African American women. Therefore, according to Thomas, if the study of health beliefs and behaviors does not include study of the psychology of health for Black women, the result is knowledge that is incomplete and therefore inadequate for the purposes of health care intervention. Hence, the behaviors that influence the health outcomes may be observed, but is the motivation behind the behavior, truly understood? Health is a socio-cultural construct and to the extent that one’s construction of beliefs about health is partly based on life experiences, rather than rely on the current state of

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psycho-cultural science to make assumptions about what contemporary Black women may believe about health, for purposes of this chapter, the author has decided to ask some contemporary Black women to respond generally about their views on health. This approach is taken in order to open discussion and perhaps stimulate further investigation of African American women’s perceptions of health and what motivates them to participate or not, in health related activities.

A VIEW OF AAW PERCEPTIONS OF HEALTH Sample

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Since the intention was to obtain anecdotal data regarding the meaning of health and what it means to be healthy a networking or “snowball” sampling approach (Polit and Beck, 2008) was used. The networking method of data collection gathers subjects by asking those who have already agreed to participate to refer, to the data collector, others with similar characteristics to the subject. The predetermined characteristics of the participants included age 25-62, have completed at least one year of college, employed, and minimum family annual income greater than $40,000. The sample for this discussion includes 14 African American women who live in 7 states (New Jersey, Florida, Virginia, Georgia, Maryland, Illinois, and Arkansas) and the District of Columbia. They are between the ages of 28 and 50 with 32 years as the average age (SD=6). The women are employed full time at various levels of professional occupations. Nine of the participants have completed graduate education, 2 have completed baccalaureate degrees, 1 has earned an associate degree, and 1 has completed one year of college. Some respondents are associated through memberships in sororities and others were simply asked whether they would participate by answering the questions. Data Collection Participants received the questions as an email attachment that included a letter of introduction that explained the purpose for collecting the information, a request that they participate and the following instructions: • • • •

Please do not write your name on the survey Write your answers on the survey using MS WORD or compatible software Feel free to only provide information that you are comfortable sharing. You are under no obligation to participate in this survey.

The women were informed that the return of the survey with their responses constituted their consent to participate. Each participant was requested to write her responses to the following statements/questions: 1. 2. 3. 4.

Define “health” and what it means for you to be healthy. Generally describe your current health How do you know when you are not healthy or when your health is at risk? What do you do to stay healthy?

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Respondents were not brought together in a focus group for three reasons: 1) because there was already the possibility of similar beliefs related to affiliations, 2) the desire to avoid further influencing their responses as a result of listening to the responses of others and the third reason was that a face-to-face meeting was impractical.

Responses to the Questions The survey answers were assigned the number that corresponds to the number given to the respective respondents’ surveys and saved (verbatim) in a word processing file that was designated for storage of the survey replies. Each reply was coded with the same number assigned to the respondent’s survey, then organized by survey number in a file for the corresponding question. Following the identification of major concepts/themes, the raw data were given to a second reader who concurred with the categorization of the replies into the identified major concepts/themes. In response to the statement: Define “health” and what it means for you to be healthy, the 14 participants’ answers regarding the definition of health produced 27 concepts/ideas that fell into the following five broad categories (see Figure 1): 1) physical health, 2) mental health/emotional health, 3) social health, 4) spiritual health, and 5) other. Following are some of the health definition statements: I think that being healthy involves both physical and mental aspects (Respondent #1). …health is not simply the absence of disease but a state in which you are physically, emotionally, socially and spiritually balanced (Respondent #2). It[‘s] what keeps me alive and able to be product[ive]. I take care of myself to the best of my abilities by exercising, keeping stress to a minimum and following doctor’s instructions. I don’t think being healthy means that there is absolutely nothing wrong with you. I think it is more about being proactive to control any illnesses you may have and taking measures to prevent any new illnesses/ailments from occurring (respondent #5). Being balanced emotionally, physically, spiritually, and cognitively (Respondent #7)

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Spiritual as well as physical fitness (Respondent #9)

As the responses suggest, the survey participants included a variety of concepts in their descriptions of health. However, the identified categories allude to what may be considered “high priority” in their respective ideas of health. While physical and mental/emotional health were mentioned most often , physical health was the only category referenced by 100% of the participants. Mental/emotional health was identified by 10 of the 14 respondents to the survey. While spiritual health was identified by 5 participants, only two identified concepts that were included in the category of social health. The final category, “other” is intended to recognize ideas that do not fit into the previous categories but were clearly important to the five respondents who presented the concepts as part of their notion of health. For example, respondent #2 states:

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Minnie Campbell As the former program director of a non-profit health organization, I would always tell my participants that health is not simply the absence of disease but a state in which you are physically, emotionally, socially and spiritually balanced.

From this statement, it may be inferred that the respondent views health as more than the absence of disease, suggesting that it is necessary to have balance among the variables that she believes are important in order for one to be healthy. On the other hand, subject #4 states that health is: “Well being. It means a lot to me to be healthy, being able to live fully, especially to go to Work.”

This respondent, while also acknowledging that physical health is important, for her, the dimensions of “well being” and being able to fully engage in life and work are equally important. The women went on to expand on their answers by describing what it means for them to be healthy. Although the descriptions of what it means to be healthy were quite varied, they were consistent with the definitions of health. For most of the respondents (13 out of 14 or 93%), being healthy meant eating properly, engaging in regular exercise, and being free of physical ailments and/or mental distress. For another large percentage (71% or 10 out of 14) of the group being healthy meant having the ability to work and live fully, being happy, having a positive self image, and having good stress management tools. It is interesting to point out that of the 10 women who defined being healthy as having the ability to work and be happy, have a positive self image and have good stress management tools, 9 of them also identified physical health as a major theme related to being healthy. Sixty four percent (9 out of 14) of this sample of African-American women identified both physical and mental health as major themes associated with their definitions of health. The most common theme identified as related to what it means to be healthy is being able to maintain physical, mental, emotional, and spiritual balance. The following are a few examples: For me, being healthy means that I am physically, mentally, and spiritually in a good place (Respondent #13).

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To be healthy means to be free from any physical or mental ailment (Respondent #12). To be healthy is to have an overall sense of happiness mentally and physically not having a lot of aches and pains (Respondent #8).

Therefore, for this group of AAW, the concepts of physical and mental health dominate their definitions of health. However, being healthy involves a balance among variables that include physical and mental health as well as emotional and spiritual health.

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Major Concepts/Themes By Category Physical health 1. healthy body weight 2. good eating habits 3. good cholesterol, BP, blood sugar 4. Regular exercise 5. Adequate rest 6. Managing current health conditions 7. Know family medical hx. 8. No aches and pains 9. Optimum function of organs and the total body 10. Physical fitness 11. No substance abuse Mental/emotional health 12. Positive self image 13. Comfort with my body 14. Good stress management tools 15. Having a sound state of mind 16. Positive psychiatric state of mind Social health 17. Having and developing good relationships 18. Maintaining positive family and social relationships Spiritual health 19. Meditation and prayer 20. Spiritual fitness Other 21. Cognitive well being 22. Cognitive balance 23. Being centered 24. A state of being 25. Physical, emotional, social, and spiritual balance 26. Overall sense of happiness 27. Healthy living

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Major Concepts/Themes Good Overall feel healthy Healthy Excellent Have lots of energy Athletic Figure 2. Describe Your Current Health.

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Figure 2 shows the major concepts/themes identified when the participants were asked to: Generally describe your current health. Although most often the respondents (64%) describe their health as good, the responses included concerns that their health may be at risk for various reasons. Some believe that stress or not enough time to attend to activities that they think would improve or maintain health, are threats to their health. Most of the respondents included explanations as to why they thought their health was good and what factors may contribute to putting their “good” health at risk. The explanations were consistent with their definitions of health and what it means for them to be healthy. The following response from participant #14, who includes social, physical and mental domains in her definition of health, includes a description of her overall health that demonstrates the interconnectedness of the concepts that she uses to define health and describe what it means for her to be healthy:

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I am a perfectionist, so while I believe I am generally healthy all aspects of my health could be improved. My social relationships are probably the healthiest aspects of my overall health because I have been able to maintain relationships with those who are truly interested in my well-being. There is a give and take with those relationships that makes me feel good about myself. My physical health is alright but could be improved. I feel that I am generally physically healthy, except for the need to lose weight. I have a relatively high tolerance for stress at work. However, I admit that my desire to lose weight causes me more stress than anything. As a result of my concerns about my physical appearance, coupled with my frustration due to my perceived lack of time to do enough exercise to change my appearance, I feel that my mental health suffers…(Respondent #14)

Respondent #14 describes how the concepts from her definition of health relate to one another in order to create an overall perception of health for her. The description of her general health starts with the state of her social relationships. She even elaborates on the patterns and nature of her social relationships, indicating a state of those relationships that is necessary for them to contribute to her general health. She states that it is important for her to “maintain relationships with those who are truly interested in my [her] well-being.” The “give and take” nature of her social relationships made her feel good about herself. By introducing how her social relationships make her feel about herself and her concern about her physical appearance cause stress (which she says contributes to poor health) suggests that how she feels about herself may also influence the perception of her general health. Respondent #13 links church with spirituality and mentions this as the method of “dealing with a great deal of stress,” thereby suggesting that her general health is closely related to her spirituality and mental well being. She says: Spiritually, I am doing well. Mentally, I am dealing with a great deal of stress but church, family and exercise helps me to deal with that better than I have done in the past. Physically, I am doing okay. Just recently, I began to exercise at least once every day in order to combat recent weight gain (Respondent #13).

Although she does describe her physical state as okay and indicates physical activity (exercise) as a means to improve her physical condition (recent weight gain) it does not appear to play a dominant role in her perception of general health. Exploration with the respondent regarding the relationship among spirituality, mental well being and physical

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health may provide additional information related to this participant’s perception of her general health. Grading health on what appears to be a virtual scale, respondent #11 notes a difference between good and optimal health. I am in good health, but I am not in optimal health. I can always do better…better eating, better exercise regimen, etc. Currently, my diet consists of too many "quick foods" due to my work schedule. Also, I do not always meet my three days a week proposed workout schedule. Yet, I am probably within my target weight range, but I definitely could benefit from toning (Respondent #11).

Although she describes her health as “good” she qualifies the description by saying that her health is not optimal and that she “can always do better.” Her description of what she can do “better” is related to physical and dietary activities that focus on improved physical health through regular exercise and a healthy diet. Only respondents 11 and 14 specifically mention weight in descriptions of their general health. While current literature indicates that being overweight or obese are health issues for AAW (Boggs, Palmer, Adams-Campbell, and Rosenberg, 2000; Krishnan, Rosenberg and Palmer, 2008; Krishnan, Rosenberg and Palmer, in press; Rosenberg, Boggs, Palmer, and Adams-Campbell, 2008; Krishnan, et al.,2007), only 2 respondents to this questionnaire identify weight control as a necessary component for their general health. Also, it is interesting to note that participant 9, who is diabetic, does not identify diet as necessary element for her general health. In talking about her general health she states the following:

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I was diagnosed with diabetes w/in last couple years. My health is good all things considered (Respondent #9).

Respondent 9 describes the relative nature of health, having been diagnosed with diabetes a “couple years” ago she articulates that it is possible to judge one’s health by weighing relevant factors, such as a diagnosis of a chronic health problem. Since she does not describe her health as “poor” one may surmise that the respondent may understand that it is possible to be healthy within the limits of a chronic health condition. Further query of those who did not indicate weight control as an element of their general health is needed in order to better determine why the variable was not mentioned. Regarding the question, how do you know when you are not healthy or when your health is at risk, all except one respondent replied with a description of physical signs or symptoms that would cause them to suspect that there was an impending health threat. They describe what Eisenberg (1977) calls “illness.” He defines illness as “experiences of disvalued changes in states of being and in social function (p.11). In short, illness is a sense that something is wrong and is therefore quite subjective. Illness should not be confused with either sickness, which according to Parsons (1972) and Twaddle (1979) is a judgment made by others regarding an individual’s health, or disease which Eisenberg, Kirscht and Rosenstock (1979) and Kleinman (1980) describe as what physicians treat and is characterized as abnormalities in the structure and function of body organs and systems. Participants responded to this question by describing their perception or sense of an impending negative health event. For example Respondents #1says

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I generally can tell when I’m not healthy because I start to feel sluggish or extremely tired. I usually get insomnia and start to have frequent indigestion or headaches. I also start to lose weight (Respondent #1)

Signals of poor health were identified by respondent #1 as feelings of fatigue and lethargy. She also associated impending health risks to lack of sleep and weight loss. With this type of description, it is reasonable to imagine that a healthy person would be someone who sleeps well and is energetic. Similarly, respondent #14 includes sleeping patterns as a health risk indicator. However, she adds mood in her predictors of poor health such as being “short-tempered.” She states: Irregular sleep is the usual sign that something is wrong. I do not get physically sick often, but when I do, I become very fatigued, distracted, forgetful, and short-tempered. This is my cue that I need to slow down and let my body heal (Respondent #14).

Although not specifically mentioned, respondent #14’s signs of impending illness (fatigue, distraction and forgetfulness) also resemble signs of sleep deprivation. Her comment about the “need to slow down” also suggests that a person who is well rested and energetic is healthy. Feeling more certain of the indication that her health may be moving in the wrong direction, respondent #13 simply states that being “plagued with headaches… is a sure fire sign that something is not right.” She states: I start feeling groggy and I am plagued with headaches. That is a sure fire sign that something is not right (respondent #13).

The one respondent who did not indicate signs or symptoms states that she knows her health is at risk due to her family history. She responded:

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When I know the illnesses that tend to run in my family and I don’t put preventive measures in place (respondent #7).

Unlike her fellow respondents, #7 is a little more insightful about potential health risks. Noting the link between family and illnesses, she alludes to the point that genetics and biology play a role in health risk. Moreover, her response suggests that by not practicing ‘preventive measures,’ she is at increased risk. Figure 3 includes the major concepts/themes related to activities for health maintenance. When asked what they do to stay healthy, the most frequent response (11 or 78%) was regular exercise and maintenance of a healthy diet. The second most frequent answers (5 respondents or 36%) were that they enjoy themselves, relax, take “me time,” and “down time,” and try to avoid stress or take action to alleviate stress. The third most common responses were to get regular medical checks, nurture familial and social relationships, and attend church. Examples of statements that indicate these themes include the following: Exercise and maintain healthy eating habits. Pay attention to the small things so they don’t turn into bigger issues (but not in a hypochondriac type of way). (Respondent #12)

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Minnie Campbell I monitor glucose levels, diet, and exercise. I try to reduce stress as much as possible by reaching out to family, friends, church. (Respondent #9). Eat healthy foods, exercise, attend church continuously foster my personal relationships and friendships, regular physician exams. (Respondent #8). I watch what I eat and I exercise, but I do not deprive myself. A little indulgence is therapeutic. If I really want ice cream, a cookie, or French fries, I get a kiddie cup, one cookie, or a small fry. That’s usually enough to satisfy my food craving and I am able to burn that off at the gym. If I don’t have time to go to the gym, I park far, take the stairs, or do exercises on the floor while watching my soap operas. I watch ridiculous reality tv shows, and get manicures and pedicures. I have date nights with my husband and we take trips to visit friends. (Respondent #14)

The themes suggest that the participants are aware that daily lifestyle behaviors such as maintaining a healthy diet and exercise are important methods of maintaining one’s health. Routine medical visits, although 3rd on the list, is also recognized as a means of making sure that one remains healthy. The respondents are relatively young (mean age = 36 years) and literature has shown that as professional Black women age, they become more religious (Bacchus and Holley, 2004). The relatively young age of the participants may explain why church attendance and spirituality ranked low in the method of staying healthy.

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Respondents Major Concepts/Themes Exercise Maintain healthy eating and personal habits, take vitamins Get regular medical checks, see MD when necessary Enjoy myself/relax, me time, down town, take vacations Nurture good Relationships (familial and social) Try to avoid stress, Stress relief, Do not overload my schedule Attend Church/spirituality

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Figure 3. Health Maintenance Activities.

Also, lifestyle behaviors mentioned by the women were consistent with their definitions of health. However, while all but three participants indicate the need to engage in healthy eating to maintain health, only 2 included a healthy diet in their narratives that described their overall health. It may be possible that because the participants are well educated, they are also well informed about what activities “ought” to be done in order to maintain health. As noted

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earlier, criteria for participation was at least one year of college and an annual family income of at least $40,000. None of the participants are health care professionals. Hence, there is no reason to believe that their responses were a result of their formal education or work experiences.

Other Findings In addition to the survey narratives it was observed that certain words were recurrent throughout the survey responses. Figure 4 shows the frequency with which the included words were mentioned by the participants. These frequencies are consistent with the predominant concepts that were identified from the survey response narratives. Diet, exercise and stress were most frequently mentioned in response to all of the survey statements/questions. While relationships and references to social activities were mentioned, they did not occur as frequently as diet, exercise and stress. In addition, “relax” and “rest” were mentioned once or twice respectively. One may infer from these frequencies that concern about diet, exercise and stress dominate the health perceptions of these women while rest and relaxation do not appear to be a major component. Further exploration of the lives of these women may offer some insight into why some concepts dominate their perspectives while others are not major elements. Is it possible that the multiple intersections of these women’s lives (as described by Thomas, 2004) contribute to the dominance of diet, exercise and stress in their health perceptions? African America women are frequently victims of stress related health problems such as hypertension, heart disease, stroke and cancer. Perhaps the intersections of being female and Black in the United States have an unfavorable influence on the health of Black women.

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Words Exercise Eat Stress Weight Relationship Social

Frequency 29 25 17 8 7 4

Figure 4. Word Frequencies.

CONCLUSION While these results can only be applied to the subjects who participated in this survey, what can be determined from looking at this group’s responses is that there are indications that traditional African American cultural beliefs are generally evident in the responses of these subjects. Concepts such as balance among physical, mental, emotional and social aspects of the person’s life are evidence. In fact, the implication that human action is a means of controlling events is consistent with the West African notion that health is a matter of

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being in harmony with nature, and illness as evidence of disharmony (Jacques; CampinhaBacote, 2008). Also, the idea that action (or inaction) can influence one’s health is consistent with the West African belief that knowledge and proper behavior are necessary to positively influence one’s destiny. Since health is part of the life process, then knowledge and proper behavior relative to one’s health may result in positive outcomes. However, this does not necessarily suggest that simply providing health information or access to health care services will result in positive health outcomes for African American women. What is missing and cannot be determined from the responses to this survey is whether or how the life experiences of these women have influenced their ideas of health, how to be healthy, when they are not healthy and how to maintain their health. One way to determine whether and to what degree their life experiences have influenced these health perceptions is to follow up this survey with interviews that explore how living as Black women has influenced what they understand about health and being healthy as well as exploration of how being an African American woman influences their health behaviors. The chapter by Amen and Taha in this book outlines a study proposal that explores the lived experience of Black women and their health behaviors.

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REFERENCES Banks-Wallace, J. (2000). Womanist ways of knowing: Theorectical considerations for research with African American women. Advances in Nursing Science, 22(3), 33-45. Bacchus, D.N.A. and Holley, L.C. (2004). Spirituality as a coping resource: the experiences of professional black women. Journal of Ethnic and Cultural Diversity in Social Work. 13(4): 65-84. History: Black Women’s Health Study Website (2008, December). Retrieved December 8, 2008, from http://www.bu.edu/bwhs/index.htm. Boggs DA, Palmer JR, Adams-Campbell LL, and Rosenberg L. Change in diet patterns in relation to weight gain in the Black Women’s Health Study. Am. J. Epidemiol 2008;167(Suppl):S398. Campinha-Bacote, J (2008). People of African-American heritage. In L.D. Purnell and B.J. Paulanka (Eds.), Transcultural health care: a culturally competent approach (3rd ed), (pp. 56-74). Philadelphia: F.A. Davis. Hunt, MO, Wise, LA, Jipguep, MC, Cozier, YC, and Rosenberg, L (2007). Neighborhood racial composition and perceptions of racial discrimination: evidence from the Black Women’s Health Study. Social Psychology Quarterly. 70(3):272-289. Jacques, G. (1976) Cultural health traditions: A black perspectives. In F. M. Branch and P. P. Paxton (Eds.), Providing safe nursing care for ethic people of color. New York: AppletonCentury-Crofts. Kirscht S.V. and Rosenstock I.M. (1979) Patients’ problems in following recommendations of health experts. In G.C. Stone, F. Cohen and N.E. Adler (Eds.), Health psychology – A handbook: Theories, applications and challenges of a psychological approach to health care systems. San Francisco: Jossey-Bass.

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Kleinman, A. (1980). Patients and healers in the context of culture. Berkeley: University of California Press. Krishnan S, Rosenberg L and Palmer JR (in press). Physical activity and television watching in relation to risk of type-2 diabetes in the Black Women’s Health Study. American Journal of Epidemiology. Krishnan S, Rosenberg L, and Palmer JR. Fast food consumption and risk of type 2 diabetes in the Black Women’s Health Study.(2008) American Journal of Epidemiology, 167(Suppl):S313. Krishnan S, Rosenberg L, Singer M, Hu FB, Djoussé L, Cupples LA,and Palmer JR.(2007) Glycemic index, glycemic load, cereal fiber intake and risk of type 2 diabetes in U.S. black women. Archives of Internal Medicine;167(21):2304-9. Landrine, H. and Klonoff, E.A. (1992). Culture and health related schemas: A review and proposal for interdisciplinary integration. Health Psychology, 11(4):267-276. Parsons, T. (1972). Definitions of health and illness in the light of American values and social structure. In E.G. Jaco (Ed.), Patients, physicians and illness (2nd ed.), (pp. 107-127), New York: The Free Press. Polit, D.E. and Beck, C.T. (2008). Nursing research:Generating and assessing evidence for nursing practice. Philadephia: Wolters Kluwer/Lippincott, Williams and Wilkins. Rosenberg L, Boggs DA, Palmer JR, Adams-Campbell LL. Meat, fat, and dairy intake in relation to breast cancer incidence in the Black Women’s Health Study. Am. J. Epidemiol. 2008;167(Suppl):S360. Shambley-Ebron, D. Z. and Boyle, J.S. (2004). New paradigms for transcultural nursing: Frameworks for studying African American women. Journal of Transcultural Nursing, 15(1), 11-17. Snow, L. F. (1974) Folk medical beliefs and their implications for care of patients: A review based on studies among black Americans. Annals of Internal Medicine, 81(1), 82-86. Snow, L. F. (1977) Popular medicine in a black neighborhood. In E. H. Spicer (Ed.), Ethnic medicine in the southwest (pp. 19-95). Tucson: University of Arizona Press. Snow, L. F. (1978) Sorcerers, saints and charlatans: Black fold healers in urban America. Culture, Medicine and Psychiatry, 2(1), 69-106. Snow, L. F. (1983) Traditional health beliefs and practice among lower class Black Americans. Western Journal of Medicine, 136(6), 820-828. Taylor, S.E. (2001). The health status of black women. In R.L.Braithwaite and S.E. Taylor (Eds.), Health issues in the black community (pp. 44-58). San Francisco: Jossey-Bass. Twaddle, A.C. (1979) Sickness: a sociological view. In E.G. Jaco (Ed.), Patients, physicians and illness (2nd ed.), (pp. 315-326), New York: The Free Press.

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In: Black Women’s Health: Challenges and Opportunities ISBN 978-1-60876-453-2 Editor: Yvonne Wesley © 2009 Nova Science Publishers, Inc.

Chapter 7

POSTPARTUM DEPRESSION AND AFRICANAMERICAN WOMEN: THE CULTURAL CONTEXT Valera A. Hascup Transcultural Nursing Institute, Kean University, Union, N.J. 07083 Somerset Medical Center, Somerville, N.J. Duquesne University, Pittsburgh, Pa

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ABSTRACT Cultural implications for postpartum depression among African-American women cannot be discussed without first discussing the Western (U.S.) perspective of perinatal mood disorders. The purpose of this chapter is five fold. The first section (Section I) discusses postpartum depression from a Western perspective including discussion of perinatal mood disorders. The second section (Section II) examines the cultural context of postpartum depression including socio-anthropological perspectives of role transition to motherhood and its relationship to postpartum depression. The next section (Section III) discusses measurement of postpartum depression from a Western and non-Western cross-cultural perspective. The fourth section (Section IV) will discuss postpartum depression in African-American women, and the final section (Section V) will present implications for health policy. The goal of this chapter will be to provide a comprehensive overview of postpartum depression based on the literature. The various cultural, social, and anthropological factors that influence the development of this tragic illness will be presented to develop a comprehensive understanding of postpartum depression within the cultural context.

SECTION I Introduction There has been an increasing focus on the etiology of postpartum depression; however, the literature reveals there have been few studies exploring the cultural context of this devastating mood disorder among ethnic groups. Reports of non-Western (non U.S.)

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incidence of postpartum depression vary, ranging from 0-40% (Posmontier and Horowitz, 2004). The assumption is that the label of postpartum depression from a cultural perspective is not used or is not acceptable, that symptoms of postpartum depression vary by culture, or more importantly, that cross cultural measurements and diagnostic standards are not universal and do not match the DSM IV-TR criteria (American Psychiatric Association [APA], 2000; Posmontier and Horowitz, 2004). The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV TR) defines postpartum depression as “a major depressive episode occurring within 4 weeks of childbirth (American Psychological Association, 2000). However, other studies have indicated that symptoms can occur most often 6 – 12 weeks after delivery, but can also occur anytime during the first year after delivery (Sobey, 2002).

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The Western Perspective of Postpartum Depression A clearly negative outcome of the perinatal period is postpartum depression (PPD). The nature of PPD as a disease and as an illness and its relationship with behavioral and structural variables remains unclear (Beck 2002; C. T. Beck, 2002cp. 276; C. T. Beck and Gable, 2000). Postpartum depression is described as a “dangerous thief that, after delivery, robs a mother of precious time with the infant she has anticipated throughout her pregnancy (C. T. Beck, 1992). Its effects are not limited to just the mother, but also husband/partner, other children and family relationships, and society (; Appleby, Gregoire, Platz, Prince, and Kumar, 1994; C. Beck and R. K. Gable, 2001; C. T. Beck, 1999a). Clinicians and researchers have long neglected the study of mental health of women of all cultures. Postpartum depression has become a leading health concern affecting not only the mother and infant, but family and society (Appleby, et al., 1994; C. T. Beck, 1992, 1993, 1996a, 1999a, 1999b, 2002a, 2003; C. T. Beck and Gable, 2000; Beeghly, et al., 2003). Noteworthy is that most of the extant research conducted on PPD has focused on White Caucasian women. Beck’s seminal research on PPD focused primarily on White Caucasian women with only two of her studies focusing on Hispanic women (C. T. Beck, 2005; C. T. Beck and Froman, 2005) It is estimated that 400,000 mothers in the United States ( 1 in 10 women in Western countries) will experience varying degrees of PPD each year (C. T. Beck and Gable, 2003; Goldbort, 2006). Unfortunately, only a small number of these women are identified and assessed by the healthcare provider (C. T. Beck and Gable, 2000). Postpartum depression escapes early detection because women suffer in silence (C. T. Beck, 2002a; C. T. Beck and Gable, 2000; Wood, Droppleman, and Meighan, 1997). The social stigma associated with PPD is the major factor that prevents women from seeking help that crosses all cultures (Acosta, Candelario, and Argote-Freyre, 2005; Kruckman and Smith, 2002; Small, Lumley, and Yelland, 2003; Stern and Kruckman, 1983b). Risk factors and the correlates of PPD are important for nurses to recognize in an effort aimed at early diagnosis and treatment of this tragic illness (Amankwaa, 2003b). Lee, Alexander, Yip, Leung and Chung (2004, p.124) reported that risk factors for PPD that are present in Western society were also “identified as causal” in their sample of Chinese women. Calister (2005) recognizes that there is evidence in the literature of positive outcomes of culturally competent care, and the end result of providing culturally competent care can lead to significant improvements in the welfare of women and children. The concept of cultural patterning as a factor in developing PPD has not been fully investigated. Sociocultural factors

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such as the structure and organization of the family and social group, and role expectations of the new mother and significant others influence maternal adjustment during postpartum (; C. T. Beck, 2002b; Stern and Kruckman, 1983a). Despite advances in medical care, risk assessment and diagnosis of PPD remains difficult. Depression has deep experiential and emotional meanings in Western culture, and has been imprecisely applied to both mild and common temporary forms of depression, as well as to more severe psychotic reactions (Kruckman and Smith, 2002). Although depression is the number one mental health problem of Americans from all demographic and ethnic groups, a paucity of research exists regarding depression in ethnic minorities (Kim, 2002). Nahas and Amasheh (1999; Nahas, Hillege, and Amasheh, 1999) reveal that there is “very little information available about postpartum depression in Middle Eastern women” (p. 37). Amankwaa (2003b), Barbee (1992), Logsdon (2000), Waite and Killian (2007), and Warren (1994) confirm there is scant research in the literature regarding postpartum depression and African-American women. The limited amount of nursing research conducted on postpartum depression used primarily quantitative methodology that focused on the biological and/or psychosocial causes such as hormonal shifts, maternal age and birth order, previous psychiatric history, and marital relationship, and focused primarily on European-Anglo women (Amankwaa, 2003b; C. T. Beck, 2002c; Sichel and Driscoll, 2000). Sichel and Driscoll (2000) compare female brain biochemistry to the fault line beneath the earth’s surface. While the surface may appear intact, stresses in life and hormonal changes can disrupt this delicate balance of brain biochemistry and an emotional earthquake occurs. Most importantly, studies have not explored PPD within the cultural context of ethnic women including African-American women (Amankwaa, 2003b).

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Perinatal Mood Disorders While the majority of women will adjust normally to the postpartum period in spite of anxiety, fatigue, and ambivalent feelings, a minority will experience mood disorders. When clinicians think of psychiatric illnesses associated with childbearing, it is not uncommon to think about postpartum depression and other psychiatric disorders that can occur after childbirth. Noteworthy, however, is that psychiatric illness can occur anytime during pregnancy. The first appearance of psychiatric illness may occur in pregnancy and not in the postpartum. The term perinatal mood disorders may be more appropriate for this cluster of psychiatric disorders. Therefore, it is important to discuss the central features and epidemiology of the various perinatal mood disorders (Fernandez, et al., 2005).

Historical Perspective Much of the information regarding the history of postpartum mood disorders comes from Europe. In 1858, France established a hospital for postpartum psychiatric diseases; however women’s issues were minimized. “Folie des nourrices,” a psychosis of nursing mothers was recognized, but only as a legitimate reason for a husband who had become tired of his wife to have her sent to an asylum (Fernandez, et al., 2005). In 1926, Strecker and Ebaugh

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unfortunately concluded erroneously that there was no psychosis designated as postpartum” (Fernandez, et al., 2005). In 1994, the postpartum onset of a psychiatric illness was first used as a specifier in the DSM-IV. To date, there is still no specific diagnosis of postpartum illness. However, the specifier allows for the following: 1. A diagnosable illness that can be related to childbirth 2. A diagnostic code that allows for provider and pharmacy payments as well as follow up visits. 3. A category that will allow further research into these disorders (; Fernandez, et al., 2005).

Antenatal Depression Pregnancy was previously believed to be a time of “bliss” and a time of emotional wellbeing, protecting women against depression (Fernandez, et al., 2005; Spinelli, 2006). However, research reveals this is not the case with more than 10% of pregnant women experiencing depression. According to Moses-Kolko and Kraus Roth (2004), 7 to 26% of pregnant women meet the criteria for either minor or major depression during pregnancy. Furthermore, women are at the greatest risk for new-onset depression during the first postpartum year with approximately 45%-65% experiencing a first episode during this time (Moses-Kolko and Kraus Roth, 2004). There is a high correlation between antepartum depression and postpartum depression (Moses-Kolko and Kraus Roth, 2004).

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Postpartum Syndromes Maternity Blues Maternity blues is not depression but is considered to be a transient state of heightened activity that occurs within the first three to five days after delivery (Amankwaa, 2003b; Fernandez, et al., 2005). Maternity blues crosses all cultures, appearing in approximately 5080% of all women and is thought to be physiologically based and unrelated to environmental stressors (Amankwaa, 2003b; C. T. Beck, Reynolds, and Rutkowski, 1992; Fernandez, et al., 2005). The symptoms include moodiness, tearfulness, feelings of elation, and heightened reactivity. Noteworthy for the clinician is that the presence of maternity blues is an early warning sign and predisposing factor in the development of postpartum depression. AfricanAmerican women perceive “the blues” to be at the midway point between feeling down and actual depression (Barbee, 1994). Beck, Reynolds and Rutkowski (1992) found a correlation between maternity blues and the development of postpartum depression. Postpartum Depression Defined Postpartum depression is classified as a major depressive disorder. The DSM-IV TR (American Psychiatric Association [APA], 2000) states that the depressive episode occurs approximately within four weeks of birth. However, many researchers and clinicians disagree and believe that postpartum depression can occur up to one year after birth. In order to be

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classified as postpartum depression, five or more of the following symptoms must be present for a least two weeks: hypersomnia or insomnia, agitation or retardation, appetite changes, fatigue, feelings of guilt and worthlessness, loss of concentration, and suicidal ideation (American Psychological Association, 2000).

Postpartum Psychosis Postpartum psychosis, a medical crisis, occurs in one to three cases per 1000 deliveries (Amankwaa, 2003a; Fernandez, et al., 2005), and it is the most severe condition that can be present in the postpartum period. In most cases, postpartum psychosis will present with symptoms within two weeks of delivery (Fernandez, et al., 2005). In the psychotic phase, symptoms include hallucinations, delusions, disorganized speech, and behavior. In the manic phase, symptoms include insomnia, hyperactivity, racing thoughts, and mercurial moods (Fernandez, et al., 2005). Women with postpartum psychosis are at great risk for harming their infant, and need careful observation and monitoring. Postpartum Obsessive Compulsive Disorder (OCD) This disorder is a newer diagnosis and prevalence has not been determined (Fernandez, et al., 2005). It is characterized by particularly intrusive and repetitive thoughts associated with harming the infant. Those with pre-existing OCD will have increased symptoms. Others develop these obsessions for the first time after delivery. Mothers express fear at being alone with the baby because they cannot control their intrusive and obsessive thoughts about harming the baby (Fernandez, et al., 2005).

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Postpartum Panic Disorder This disorder is characterized by intense anxiety, fear, rapid heart rate and breathing with a sense of impending doom. Anxiety can remain between attacks and as a result , women curtail their activities to avoid attacks (Fernandez, et al., 2005). Postpartum panic disorder may occur for the first time postpartum. Post-Traumatic Stress Disorder after Childbirth (PTSD) Historically, in 1989 PTSD was first listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) (American Psychiatric Association [APA], 1980). Vietnam War veterans were the first identified as experiencing PTSD. The DSM-IV criteria includes experience with an event that involves threatened or actual death or serious injury to self or others (American Psychiatric Association [APA], 1994). The DSM-IV does not specifically classify childbirth as an extreme stressor; however, Beck (2004a) posits childbirth can be considered as a traumatic event. Symptoms include intense fear, helplessness and/or horror that follow a labor, and delivery that involved threat of death or serious injury to self or the baby (C. T. Beck, 2004a; Fernandez, et al., 2005). Additional possible symptoms of PTSD in mothers after delivery include sexual avoidance, fear of future childbirths, disruption in mother-infant bonding and attachment, insomnia, difficulty concentrating, irritability and hyper-vigilance. The traumatic birth event is persistently re-experienced in the form of recurrent memories, flashbacks, and nightmares. The mother will avoid anything that reminds her of the event. Further research

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needs to be conducted to investigate the clinical presentation of PTSD in new mothers as the result of a perceived traumatic birth experience (C. T. Beck, 2004a).

Postpartum Depression Myths 1. 2. 3. 4.

Depression in new mothers is not serious Postpartum depression is more common in white middle class women Postpartum depression will go away on its own Women with postpartum depression cannot breastfeed

Depression in new mothers is always serious, and may not improve without treatment (Fernandez, et al., 2005). While postpartum depression has been studied more extensively in white Caucasian women, this perspective is beginning to change. It is recognized that PPD is a global concern. Research dispels the myth that mothers who experience PPD cannot breastfeed. Mothers who receive treatment (medication) for PPD have the option to breastfeed (Fernandez, et al., 2005). According to Fernandez et al. (2005): Current studies suggest that paroxetine (Paxil) and sertraline (Zoloft) appear to be good choices in breast feeding mothers. These medications show minimal crossover into the breast milk. Fluoxetine, Citalopram and fluvoxamine do not appear to be good choices. Fluoxetine and citalopram have a higher rate of crossover and the data on fluvoxamine are very limited. It is important to note that if a mother has already been on an antidepressant during pregnancy, it is recommended that she breast feed on the same agent. The rational is that placental crossover is 40-70% of maternal dose while the most concentrated antidepressant in breast milk is only 6-9% of maternal dose. (P. 47).

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Predisposing Risk Factors Fernandez et al. (2005) categorize risk factors for PPD as major, minor, and other factors. Major factors include previous history of depression, anxiety during pregnancy, teenage pregnancy, conflict with partner/spouse, lack of social support and stressful life events not related to the pregnancy. Socioeconomic factors and obstetric complications are considered to be minor risk factors. Other factors include multiple births which lead to increased fatigue, difficulties with breastfeeding and concerns over low-birth weight infants. Difficulty with conceiving is also a contributing factor to the development of PPD (Fernandez, et al., 2005). Cheryl Beck (1996a) identified 13 risk factors that were significant predictors of postpartum depression in her meta-analysis of predictors of postpartum depression. Cohen’s (1988) conventional operational definitions of small, medium and large effect sizes were used to interpret the findings (r = .10, small; r = .30, medium, and r = .50, large) (C. T. Beck, 2001). The results revealed ten of the risk factors had medium effect size (prenatal depression, self-esteem, childcare stress, prenatal anxiety, life stress, social support, marital relationship, history of depression, infant temperament, and maternity blues. Three of the risk factors had small effect sizes (marital status, socioeconomic status, and unplanned/unwanted pregnancy).

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One other meta-analysis of predictors of postpartum depression was conducted by O’Hara and Swain (1996). Using Cohen’s d indicators, with a d of .2 indicating a weak relationship, .4 a moderate relationship, and .8 or above a strong relationship (Cohen, 1988), the researchers reported that the strongest predictors of postpartum depression were “ prenatal depression (d = .75) and prenatal anxiety (d = .68), social support (d =-,63), life events (d =.60), and mother’s history of psychopathology (d = .57)” (C. T. Beck, 1996b, p. 276). Small but significant relationships with postpartum depression included “neuroticism (d = .39), a negative cognitive attribute style (d = .24), and obstetric variables (d = .26)” (C. T. Beck, 1996b, p. 276). Noteworthy, risk factors for postpartum depression cross-culturally are similar with one notable exception: that of gender of the infant in those cultures that place a higher value for male infants over female infants. This is reported in the literature from China, Turkey and India, but may also include other countries as well (Goldbort, 2006).

SECTION II

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The Cultural Context of Postpartum Depression Transcultural Perspectives Cross-culturally, pregnancy and birth are characterized as a rite of passage in the life of women that normally signals a time of great happiness. However, for many women, pregnancy and birth may bring about feelings of sadness and despair (; Amankwaa, 2003b). PPD is one of the most prevalent complications of childbearing women, and in AfricanAmerican women, the rates can be as high as 35% (; Moses-Kolko and Kraus Roth, 2004). Postpartum depression escapes early detection as women suffer in silence cross culturally (Beck and Gable, 2000; Beck, 2002; Wood, Thomas, Droppleman, and Meighan, 1997). From a transcultural perspective, the literature describes women throughout the world as experiencing degrees of sadness postpartum. However, while postpartum depression is a culturally universal experience, the underlying cause is not attributed to biologic causes, the treatment is not based on the Western biomedical model, and it is not uncommon for women in non-Western countries to express symptoms of depression somatically that may not be easily recognized or understood by Western clinicians (Goldbort, 2006; Kruckman, 2000; Laungani, 2000). This is common in India, Pakistan, Bangladesh, the Arab States and Korea (Laungani, 2000; Stern and Kruckman, 1983a). Hispanic women also expressed depression somatically (Hascup, 2003). The literature reveals that somaticizing depression is due to several factors: 1) depression is not a concept easily understood by many non-Western cultures; 2) psychological disorders create fears and negative implications; and 3) for new mothers who have just given birth, presenting with psychological problems might be considered as bringing shame and disgrace to the family (Laungani, 2000). In order for many non-Western women to obtain sympathetic concern and understanding from their husband and family, problems and symptoms must be presented in a somatic manner – a manner in which the family will accept, identify with, and understand and would be willing to seek the appropriate medical intervention (Laungani, 2000).

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Cultural Considerations of Postpartum Depression – Universalism vs. Relativism Debate Universalists and Relativists are concerned primarily with these questions (Laungani, 2000): 1. Is there an agreement worldwide regarding the definition, conceptualization, and diagnosis of depression? 2. Is postpartum depression a culture bound illness found primarily in Western cultures? 3. Or is postpartum depression a cross cultural experience that varies in frequency, expression, manifestation, and intensity?

Biomedical Paradigm The universal perspective posits that mental illness is a disease process that presents with symptoms that are treated and diagnosed consistently throughout the world. In the United States, the biomedical model is the foundation for this perspective, and mental illness requires medical, psychopharmacological, and psychotherapeutic treatment. This is the same model that used to treat physical illness (Goldbort, 2006) in Western society. However, this approach disregards and inadequately deals with the non-biological influences of mental illness.

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Sociological Paradigm In this model, mental illness is perceived to be a deviation of specific norms in a group or society. Society, environment, and culture are the underlying cause of the mental illness. Therefore, changing conditions in these areas would technically lessen stress, and therefore lessen problems with mental illness (Goldbort, 2006). From a pragmatic perspective, mental illness can be considered as a multifactoral experience that must utilize both paradigms in order to understand the impact of mental illness (Goldbort, 2006). Therefore, the problem is not if depression exists, but how depression is manifested and expressed. The word depression is not easily understood in many cultures (Laungani, 2000), and therefore cannot be easily translated. The literature reveals that it is common for women of non-Western cultures to somaticize (convert anxiety into physical symptoms) postpartum depression. The reasons for this are that depression is not a concept easily understood cross culturally. Mental illness or psychological distress are perceived as negative and arouse fear, and it is not culturally acceptable for a new mother who has just given birth to present with psychological issues. The expression of her symptoms must occur in a manner that is culturally accepted – that of somatization (Laungani, 2000). How the process of somatization occurs is not easily determined. However, understanding this phenomenon may assist in understanding postpartum depression in non-Western cultures. Anthropologists, coming from a relativistic perspective, state that each culture develops a system of rules to which people

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are expected to conform. Deviations from these standards are perceived to be mental illnesses that are dealt with in culturally appropriate ways (Kruckman, 2000; Kruckman and Smith, 2002; Laungani, 2000; Stern and Kruckman, 1983a). Stern and Kruckman (1983a) posit that little evidence exists in anthropological literature regarding postpartum depression. They hypothesize that postpartum depression is a Western culture-bound illness due primarily to the lack of a structured postpartum period that is evident in most cultures, but not present in the Western culture. They report the cross-cultural presence of common elements in the postpartum period to include: 1) a distinct structured post partum period, 2) protective practices to recognize the vulnerability of the new mother, 3) a period of social seclusion, 4) a period of enforced rest, 5) help with house hold activities from relatives and/or the midwife, and 6) the social recognition of the achievement of a new social status: that of the role of motherhood. The social recognition includes the use of rituals and the giving of gifts (Stern and Kruckman, 1983a). Stern and Kruckman (1983a) conclude that postpartum depression may represent a culture-bound syndrome due to the lack of a specifically structured postpartum period and the lack of recognition of the role of motherhood. Noteworthy, according to Dragonas et al.(1992), there is no definitive epidemiological evidence to support the hypothesis that certain cultural factors mitigate the development of PPD. This viewpoint is in direct contrast to Stern and Kruckman’s classic research (1983a). Oakley (1981) posits that the development of PPD may be associated with changing roles for women and may require a more in-depth analysis of feminist issues. According to Kumar (1994): There is also no good evidence for or against the theory that postnatal depression is partly the consequence of the customs and rituals that traditionally make the transition to parenthood being stripped away in developed Western societies. (p. 250) Technocentric and Ethnokinship Cultural Perspectives – Emerging Classifications Postmontier and Horowitz (2004) identify emerging classifications identified as technocentric and ethnokinship. Technocentric refers to the use of technology rituals in some cultures as the primary focus of care for mother and baby in the immediate postpartum period. Additionally, mother-infant separation occurs that enforces these rituals. In the biomedical worldview (Western), these practices terminate at 24-48 hours, and mothers are discharged to home to a society that values technology over social support networks. Ethnokinship is present in cultures in which rituals and social support are the primary focus of the immediate postpartum period, in contrast to technocentric cultures. Social support includes religious, linguistic, and cultural practices. Technology may be used to prevent adverse outcomes, but it does not supplant the primary importance of family social support. This worldview is found in the Korean, Chinese, Japanese, Hmong, Mexican, African, Arabic and Amish, and Hispanic cultures as well as other cultures. (Posmontier and Horowitz, 2004).

Role Transition to Motherhood: Sociocultual Aspects of Postpartum Depression It is important to describe the sociocultural factors that influence the development of postpartum depression. There is a dramatic disparity between the new mother’ feelings of sadness and society’s expectation and stereotype that they should be happy and content. There is also an increasing public awareness of postpartum depression. This increasing awareness

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may be explained by Western societies’ greater awareness that childbirth is a social process involving a role transition and cannot be perceived solely as a biological event: “Birth, like death, is not only a physiological fact but also a social act” (Cox, 1988; Kitzinger, 1982, p.75; Posmontier and Horowitz, 2004). The difference in postpartum depression versus depression at other times in a woman’s life is based on the newly postpartum mother’s perceived feelings of guilt and inadequacy over her role as competent mother (C. T. Beck, 1992, 1993; Sleutel, 2002).

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Anthropological Perspectives Cox (1988) stated that the process of childbirth is inextricably linked with sanctioned cultural rituals. The etiology, treatment, and long term sequelae can only be understood within a sociocultural context. Extensive extant classic anthropological transcultural literature confirms this perspective (Cox, 1988). Stern and Kruckman in their classic research (Stern and Kruckman, 1983a) also confirm the connection between sociocultural factors and postpartum depression, i.e., sanctioned cultural rituals mitigate the development of postpartum depression. Mead and Newton (1967) reveal in their anthropological research that in all cultures pregnancy evokes a sense of parental responsibility and accountability for the wellbeing of the pregnant woman. Anthropological research focuses on the assumption that elaborate postpartum rituals reinforce the new social role of motherhood and serve to reduce or prevent negative emotional states in the postpartum period. Most important, is that postpartum rules are not absolute and may be altered by economic or social circumstances. Postpartum rituals do exist in Western society; however they are less formal than in nonWestern cultures, they are not socially reinforced, and may not be practiced at all. In Western Society, pregnancy is considered the time of vulnerability in contrast to other cultures where the postpartum period is considered to be the most vulnerable time. The prescribed sociocultural postpartum rituals are designed as protective factors, psychologically and physically, for both mother and baby during this perceived critical time (Kendall-Tackett, 1994; Mead and Newton, 1967; Posmontier and Horowitz, 2004; Stern and Kruckman, 1983a; Tentoni and High, 1980). Oates et al. (2004) conducted a qualitative research study in eleven countries (France, Ireland, Italy, Sweden, USA, Uganda, UK, Japan, Portugal, Austria and Switzerland). Uganda was the only predominantly Black country in the study that explored whether PPD is a universal condition. The findings revealed that while there is a universal state of morbid unhappiness (postnatal depression) cross culturally following childbirth, this was not perceived as an illness requiring professional medical intervention.

Maternal Role Attainment and Postpartum Depression According to Sleutel (2002), Reva Rubin, noted maternal child nurse theorist whose classic works are widely associated with pregnancy and maternal role attainment, states the attainment of the maternal role is achieved by incorporating cultural comparisons and role models within the woman’s circle of friends forming a foundation of behavior and maternal identity. Postpartum depression has been found to have a negative effect on the woman’s selfesteem and confidence in this new role of motherhood (Sleutel, 2002). Furthermore, it is

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hypothesized that perceptions of inadequacy as a mother may intensify negative feelings toward the baby including hostility (C. Beck, 1996). Mercer (Mercer, 1985) posited that a new mother becomes skilled and confident in her role by four months after birth. Mercer posits that a mother’s feelings of confidence in her new role contribute to positive infant behaviors and maternal-infant relationship. The negative relationship between postpartum depression and maternal role attainment strongly suggests the need for women to be assessed for postpartum depression within three months after delivery. Unfortunately, many women are seen by their obstetrician at two weeks postpartum, before symptoms are present, and again at six weeks postpartum. After that, women have minimal contact with their obstetrician, indicating that assessment at the pediatrician’s office should focus on the mother’s mental and emotional health (Fernandez, et al., 2005; Sleutel, 2002) in addition to newborn assessment.

SECTION III

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Measuring Depression: Western and non-Western Considerations Western researchers, in general, believe that the best way to capture a concept is to measure it, and scientifically finding answers will possibly lead us to finding solutions to human problems. It is posited that measurement allows for an operational definition to be formulated leading to precision of the concept. Anything that is real can and should be measured to obtain scientific data. This perspective is the guiding framework of the quantitative and biomedical paradigm in Western societies (Laungani, 2000; Leininger, 2006; Leininger and McFarland, 2002). However, the measurement is only meaningful if it reflects the meaning of the concept in a particular culture (Laungani, 2000). Therefore, it is imperative that one understands how African-American women articulate and conceptualize depression within the sociocultural context as well as how depression is managed in their everyday life (Waite and Killian, 2007). This will be further discussed in Section IV. Attempts have been made to capture a universal meaning of depression, which has been divided into “several symptomatic, diagnostic, affective and behavioral categories” (Laungani, 2000, p. 87). The literature reveals numerous diagnostic tests for depression, rating scales, checklists, and interview guides, which have been used by researchers worldwide. Each of the diagnostic tests has its own scoring system with stated reliability and validity. One might rhetorically question “why has it been necessary to create all of these different measures?” The answer lies in the fact that no universal definition or measurement of depression exists. Most researchers and psychiatrists still work within the medical model framework, but recently the effectiveness of the medical model has come into question. Many believe the medical model has outlived its usefulness (Laungani, 2000). Laungani (2000, p.88) posits that the “entire field of study is in urgent need of a paradigm-shift.” Kuhn (1962), noted philosopher, in his analyses of paradigm-shifts would call this shift a scientific revolution in the journey to create normal science. However, as Kuhn points out, this is not easily accomplished. Non-Western scientists are becoming disillusioned with the emphasis placed by Western researchers on quantitative methods. Goldbort (2006, p.122) states that “mental illness is thought of as a multifaceted, multilayered experience that necessitates the

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philosophical underpinnings of both paradigms-the psychiatric/biologic/medical/disease model and the sociologic/environmental model.” The assumption is that it is not necessary to eliminate one or the other. If the goal is understanding psychiatric illness and improving patient outcomes, then both models can be considered (Goldbort, 2006). Interest is developing in qualitative and ethnographic methods, but whether this will replace the hegemony on quantitative research methods and researchers remains to be determined. Kruckman (2000) postulates that a rigid physiologic etiology of PPD has lost some of its appeal, and a more evolutionary perspective has appeared. However, Kruckman posits that most of the time the cultural factors in PPD have been largely ignored, and the desire for a biocultural perspective has not been fully actualized (Kruckman, 2000). Kruckman steadfastly maintains that cultural rituals act as a calming influence on the mother, enhance rest, and can mitigate the development of PPD. Interestingly, Kruckman states that he does not imply that cultural rituals alter the hormonal factors; rather cultural rituals alter the interpretation of what is experienced. Yoruba mothers reported experiencing a sensation of “heat in the head” rather than depression (Jinadu and Daramola, 1990), and Hascup (2003) reported postpartum Hispanic women as describing a sensation of “a heavy heart” (a pesado corazon), confirming the concept of somatization. A multidisciplinary collaborative effort perhaps focused on a qualitative perspective is needed to address the enigma of sociocultural factors that relate to the development and expression of postpartum depression.

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The Emic-Etic Debate (Insider versus Outsider) Measuring postpartum depression, or depression in general cross-culturally is complicated by the unresolved question regarding the universality of the concept of depression. Most of the international research studies exploring PPD have used the Western concepts of depression and Western standardized research instruments. One of the most important considerations in conducting PPD research cross-culturally is that if there is no understanding of the cultural beliefs, attitudes, practices, and expressions about pregnancy and childbirth of a participating ethnic group, it is not possible to develop a universal research instrument for use, nor would it be possible to make appropriate and meaningful comparisons across cultures. Behaviors, attitudes, words, and values make sense and have meaning only within the context of a particular culture. For example, certain words have no meaning outside of their own cultures (Laungani, 2000), and these are emic concepts. There are values, attitudes, and beliefs that have universal meanings such as grief, joy, mourning, and fear, and these are referred to as etic concepts (Laungani, 2000). Selecting an emic concept and measuring it accurately across cultures presents a dilemma from a methodological perspective. To date, there does not appear to be a solution to the emic-etic debate.

Measurement Instruments Cross-cultural studies measuring PPD typically fall into two categories: those that were conducted using the translated versions of the Edinburgh Postnatal Depression Scale (EPDS), and those in which the EPDS was not used. The EPDS has been translated into numerous languages, both European and non-European (Laungani, 2000). The translated versions of the

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EPDS are based on an etic assumption, rather than theoretically constructed (Laungani, 2000). Additional factors that must be taken into consideration are the process of test taking, and levels of education and literacy. Not all non-Western cultures are socialized into a test taking culture as are Americans and other Western societies, which becomes problematic when attempting to administer a test for PPD, even if that test is in the ethnic language. The test for that particular ethnic group may have no relevance at all if they have not been exposed to test taking (Laungani, 2000). For example, Hispanics distrust and dislike tests, surveys and completing formal research instruments, preferring instead to tell their story. A qualitative design with interviews works best with this population (Hascup, 2003). This brings up another consideration and concern – the language factor. Not all words exist in every language, and some words may not be able to be translated. Therefore, one can readily acknowledge that PPD is a multilayered and multifactoral illness. As such, PPD requires a multidisciplinary approach in early identification of risk factors and in developing optimal treatment plans and research instruments that are cultural-specific for the particular ethnic group under study. Leininger (Leininger and McFarland, 2002) would call this care that is tailor-made. According to Huang and Mathers (2001), postnatal depression has been described crossculturally, however due to the varying definitions used to define PPD, the reported rates of PPD vary greatly. Most importantly, regardless of whatever measurement is used, it must be reflective of the same meaning and nuances that are the basis for the concept under study in a particular culture. Kumar (1994) further emphasizes that the numerical values assigned to all of the tests follow an ordinal scale of measurement, i.e., the tests reflect scores from low to high, nothing more. Kumar (Kumar, 1994) further states that “the differences in scores do not reflect precise differences in levels of intensity…” (p. 87). The three most common instruments for measuring PPD will be discussed. These are the EPDS, the BDI-II, and the PDSS. There are many other general depression instruments used for measuring PPD; they will be mentioned, however the purpose of this chapter is not to present a lengthy discussion of all the general depression instruments.

The Edinburgh Postnatal Depression Scale (EPDS) From a quantitative perspective, the Edinburgh Postnatal Depression Scale (Cox, Holden, and Sagovsky, 1987) is reported to be the instrument most frequently used for measuring PPD not only in Western cultures, but cross culturally (Oates, et al., 2004). The other two popular instruments are the Beck Depression Inventory Revised-II (BDI-II) (A. Beck and Steer, 1996; A. Beck, Ward, Mendelson, Mock, and Ergaugh, 1961), and to a lesser extent, the Postpartum Depression Screening Scale (PDSS) (C. T. Beck and Gable, 2000). The Edinburgh Postnatal Depression Scale was developed by Cox, Holden and Sagovsky (1987). The test consists of 10 items, is easy to administer, and can be completed in less than 5 minutes. The scores of each item range from 0 to 30, and the total scores range from 0 to 30 (“yes, most of the time to, “no not at all”) (Cox, et al., 1987). Seven of the ten items are reversed scored. The purpose of the EPDS was two-fold: 1) identify possible depression in a clinical setting, and 2) to be used as a research instrument (Cox, et al., 1987; Laungani, 2000). The basic underlying premise in the construction of the EPDS was to understand the sociocultural variables associated with PPD. Items on the EPDS are similar to those found on a general depression scale; therefore its use with pregnant and non-postpartum women is widely reported.

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However, because the EPDS contains no specific reference to the postnatal period, Murray and Cox (1990), stated no items had to be altered for their study. Lawrie et al. (Lawrie, Hofmeyr, deJager, and Berk, 1998) recognized a potential problem in an instrument without items reflecting the context of new motherhood and therefore added the statement “not due to the baby” to the EPDS item referring to difficulty sleeping. Their sample consisted of 103 Johannesburg South African postpartum mothers. The study revealed the mothers did not distinguish between difficulties sleeping due to unhappiness versus the baby waking. Noteworthy, however, is that Beck’s PDSS and PDSS-S are the only instruments that assess PPD within the context of new motherhood. In comparing the content validity of the EPDS, the BDI-II and the PDSS, “two of the PDSS’ 7 dimensions were measured by all three depression scales: Emotional Liability, and Contemplating Harming Oneself” (C. Beck and R. K. Gable, 2001, p. 245). The EPDS has been used extensively over the years and its psychometric properties attest to its sensitivity and specificity. Cox et al. (1987) reported a specificity = 78% and a sensitivity = 86%, with a positive predictive value = 73% (C. Beck and R. K. Gable, 2001; Cox, et al., 1987). The alpha reliability of the 10-item EPDS was reported at .87. Cox , Murray and Chapman (1993) recommend a cut-off score of 12/13 for major postpartum depression, and a score of 9 or more when screening for major or minor depression.

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The Postpartum Depression Screening Scale (PDSS and PDSS-S – Spanish Version) The conceptual basis of the PDSS was developed from Beck’s qualitative studies exploring postpartum depression (C. Beck and R. K. Gable, 2001). The PDSS (C. T. Beck and Gable, 2000) is a 35-item Likert scale consisting of seven dimensions which each contain five items, ranging from strongly disagree (1) to strongly agree (5). The instrument takes about five minutes to complete and is written at a third grade level. The psychometric properties were determined from an initial sample of 535 women who averaged 6 weeks postpartum (C. Beck and R. K. Gable, 2001). The sample consisted of 79% of White Caucasian women, 11% Black, 7% Hispanic and 4% classified as other. The demographic sheet on the PDSS asks women to self-report their ethnicity. The seven dimensions and their alpha reliabilities are (C. Beck and R. K. Gable, 2001 , p.243): 1. 2. 3. 4. 5. 6. 7.

Sleeping/Eating disturbances (.83) Anxiety/Insecurity (.83) Emotional Liability (,89) Guilt/Shame (.89) Cognitive Impairment (.91) Contemplating Harming Oneself (.93) Loss of Self (.94)

PDSS-S (Spanish Version) The recognition of PPD as a global phenomenon prompted the development of the PDSSS. The purpose of Beck and Gable’s study (2003) was to develop psychometric properties for the translated version of the PDSS. Semantic equivalence focused on whether the connotative meaning in the translated version was identical to the original PDSS. Beck and Gable included eight translators that represented the predominant Hispanic groups in the US to translate the PDSS into Spanish. The sample included 377 Hispanic mothers within 12 weeks

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postpartum. Two sites were used to ensure adequate sample size: Connecticut and Texas. The total alpha reliability for the PDSS-S was .95; total PDSS-S score for Mexicans was .94; Puerto Ricans .96, and Other (Hispanic sub-groups) was .93 (C. T. Beck and Gable, 2003). The findings revealed that when compared to the original PDSS, the reliability and psychometric properties for the PDSS-S were slightly lower but well within an acceptable range (C. T. Beck and Gable, 2003).

Beck Depression Inventory-II (BDI-II) The BDI-II was revised to have the symptom content more closely aligned with the diagnostic criteria of the DSM-IV (C. Beck and R. K. Gable, 2001). The BDI-II contains 21 symptoms. The scoring system uses a 4 point scale with scores ranging from 0 to 3. The assessment of general depression symptoms such as sleep disturbances and lack of energy during the postpartum period is difficult due to the early physiologic symptoms of new motherhood. Problematic items in the BDI-II related to weight loss and body image have been deleted. However, loss of energy and sleep disturbances remains troublesome in the BDI-II. The performance of this instrument has yet to be assessed during the postpartum period (C. Beck and R. K. Gable, 2001). Kerr and Kerr (2001) report that the Beck Depression Inventory (BDI) is the tool used most extensively worldwide. Kerr and Kerr (2001) discuss an important aspect, i.e. that for certain cultures, the BDI has limited predictive power and validity due to the semantics of translation, and patients’ different interpretations of depression and psychological distress which have a cultural basis. An important finding by Azocar and colleagues was that the BDI ignored semantic differences in translation that could lead to misdiagnoses of depression (Azocar, Arean, Miranda, and Munoz, 2001). Comparative Analysis of the EPDS, PDSS and BDI-II

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Major Postpartum Depression Instrument Cut-off Score

Sensitivity (%)

Specificity (%)

Positive Predictive Value (%)

Negative Predictive Value (%)

PDSS/80

94

98

90

99

EPDS/12

78

99

93

96

BDI-II/20

56

100

100

93

91

72

59

95

Minor Postpartum Depression PDSS/60 EPDS/9

59

86

64

82

BDI-II/14

57

97

90

83

PDSS, Postpartum Depression Scale; BDI-II, Beck Depression Inventory-II; EPDS, Edinburgh Postnatal Depression Scale (C. Beck and R. K. Gable, 2001 , p.247).

Other general depression measurement scales used for postpartum depression in addition to the EPDS are: 1. HSRD – Hamilton Rating Scale for Depression (Hamilton, 1967).

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Valera A. Hascup 2. ZUNG Self Rating Depression Scale (Zung, 1965). 3. WHO-SADD – Schedule for Standardized Assessment of Depressive Disorders (Jablensky, Sartorius, and Gulbinat, 1986). 4. CIDI – Composite International Diagnostic Interview (World Health Organization, 1993). 5. SAD – Anxiety and Depression Self-Report Scale (Bedford and Foulds, 1978). 6. IHAD – Hospital Anxiety Depression Scale (Zigmond and Smith, 1983). 7. RDC – Research Diagnostic Criteria (Spitzer, Endicott, and Robins, 1975). 8. CES – Center for Epidemiology Depression Scale (Radloff, 1977). 9. GHQ – General Health Questionnaire (Goldberg, 2007).

Kerr and Kerr (2001) noted that biases such as culture and gender were also present in other screening tools, such as the Center for Epidemiological Studies Depression scale (CESD) that is designed for diverse populations, and the General Health Questionnaire, which identifies short-term mental health changes (Kerr and Kerr, 2001).

SECTION IV Postpartum Depression and African-American Women

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The World Health Organization (WHO) and Healthy People 2010 have identified depression as a major health issue that impacts the health and well being of Americans, primarily those who are underserved or vulnerable populations (U.S. Department of Health and Human Services (USDHHS), 2000). Underserved women have a higher incidence of depression (U.S. Department of Health and Human Services (USDHHS), 2000), and the sociocultural context shapes the expression and perception of depression. Social conditions that are considered risk factors for depression in African-American women include “poverty, single family parent structure, violence, and childhood trauma” (Waite and Killian, 2007, p. 162.)

The Language of Depression There is a paucity of extant research in the nursing literature regarding postpartum depression and depression in general in African-American women. The language or expression of depression is also culturally constructed, and differs from healthcare provider’s language of depression (Barbee, 1992; Kleinman, 1977, 1980; Laungani, 2000). Warren (1994 , p.) postulates that African-American women possess a different language regarding depression that is based on their “Afrocentric epistemological worldview.” (Barbee, 2000, p. 86). Depression: The Historical Perspective Barbee (Barbee, 1992, 2000), a nurse anthropologist, explored depression in Black women. According to Barbee, Black women need to speak to someone about feeling blue. “Some of us sisters have got it bad, and that ain’t good” (Barbee, 2000, p. 86). In general, Black women do not like to speak to strangers about personal problems (Barbee, 2000).

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Barbee (2000 , p. 86) further states that “there has been extreme reluctance to seek help from professionals we regard as predominantly White racist males.” Women who do seek counseling want physicians who will listen, and not just prescribe drugs (Barbee, 2000). Murrell, Smith, Gill and Oxley (1996) confirm that childbearing African-American women have described their health care experiences as inaccessible, undignified, and indifferent. The “Black-superwoman” myth is present in which Black women think they should be strong enough to deal with their problems. Projecting this image of superwoman is limiting rather than empowering. Stoicism in women is rewarded in this culture. Most importantly in the African-American culture, depression is perceived to be symbolic of weakness, not disease. Any form of weakness would not be revealed to others, not family or healthcare providers. In the African-American culture, depression has a connotation that you are “crazy” (Barbee, 1992 p.86;; 2000). African-American women deal with depression by using religion, prayer or spirituality to ease the symptoms (Waite and Killian, 2007). African-American women incorporate both traditional values of their culture and values from the Eurocentric culture. The extent to which values they endorse varies. According to Leininger (2002, p. 47), “culture is defined as the learned, shared, and transmitted knowledge of values, beliefs, and lifeways of a particular group that are generally transmitted intergenerationally and influence thinking, decisions, and actions in patterned or certain ways.” Culture shapes the language and symptomatic expression as well as the experiential expression of depression. The links between the African-American value system and development of depression have not been examined. This value system, according to Warren (1994, p. 31) is the “cornerstone of the Afrocentric epistemology and consciousness that for African-American women.” Understanding the emic perspective of the language, experience, and somatic expression of depression in African-American women is imperative in order for healthcare providers to deliver culturally appropriate, congruent, beneficial, and meaningful care. African American women express depression using safe words – words that are accepted within their sociocultural context. Words such as “tired, fatigue, irritable, lonely, hopeless, stressed, sick, losing control, being in a black hole” symbolize depression in African-American women (Waite and Killian, 2007, p. 165) Historically, due to past mistreatments of African-Americans in the healthcare system and in research, women fear depression because it may indicate they are “going crazy,” and they fear the consequences that may occur, such as losing their children, not being accepted, or not being able to maintain employment (Amankwaa, 2003a). Distrust of the healthcare system and healthcare providers is the result of past experiences of mistreatment in research trials and clinical settings. History is not forgotten in this culture – it has left an indelible mark on the psyche of every African-American woman, young and old. Depression among African-American women is fraught with negative connotations, stigmas, and myths. Motherhood for African-American women is symbolized as a time of strength, and depression and the inability to live up to this myth causes feelings of guilt. Depression symbolizes a lack of faith in God or perhaps possession by evil spirits. It is perceived as a form of punishment for committing a sin at some point in life, or perhaps viewed as a spell that was cast for some perceived wrong doing. Depression is also perceived as a disgrace to Black women, and the threat to their role as a mother. This potential threat can lead to anxiety and depression (Amankwaa, 2003a). Barbee (1992) also identified that healthcare providers have numerous knowledge deficits regarding mental health issues in minority women, such as the lack of reliable

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epidemiological and demographic data, lack of the availability and use of mental health services in minority women, and the reliance on anecdotal literature that perpetuates myths regarding minority women. What appears to be universal among researchers exploring the phenomenon of depression, is that mental health illness exists within sociocultural and sociopolitical contexts and these contexts determine who is labeled as mentally ill, what type of label is applied, what treatment approaches are available, and what, if any, prevention programs exist. Therefore, Barbee (1992) suggests that an examination of racism in psychiatry must first precede any depression assessment of Black women. Barbee (1992) postulates that two themes are present regarding White racism in psychiatry: 1) African-Americans are born with inferior brains and therefore, limited mental growth; therefore 2) African American personality is abnormal. Meleis (2005) states that nursing knowledge is synthesized based on truth, evidence, perception, and belief. Assessment of depression in African- American women should begin with the knowledge base posited by Meleis. The literature suggests the opposite: that knowledge of African American women and depression is based on perception, beliefs, stereotyping, and myths thus perpetuating the vicious circle of bias (Barbee, 1992). Barbee (1992) states that researchers must look at depression from the contextual perspective. The contextual perspective looks at the reality of African-American’s lived experience of depression, and takes into consideration the connecting factors of gender, race, and social class. Kleinman (1977) and Kleinman and Good (1985) believe that we must seek the patient's explanatory model of illness – what do they believe caused the illness, what will make them well, what treatments would they use to create wellness and maintain health. Barbee (1992) confirms this: in order to understand depression in African-American women, questions must ask what causes the depression, how do they really feel, why they feel the way they do, and what do they need to make themselves feel better. While there is a growing body of literature regarding the link between culture and depression, culture is not mentioned frequently in the literature regarding depression and African- American women. The literature also reveals that there is little sensitivity regarding assessment, diagnosis, and treatment regarding depression in African-American women. Most of the research is acontextual and therefore, does not deal with the reality of the lived experiences of depression in African-American women (Barbee, 1992).

Postpartum Depression Rates of postpartum depression in African American women are not well documented, although overall depressive symptoms are high (Amankwaa, 2000, 2003a; Barbee, 1992; Logsdon, et al., 2000; Waite and Killian, 2007; Warren, 1994). Nursing research on postpartum depression has focused mainly on Euro-American women and has contributed to knowledge about the general nature of postpartum depression (Beck 2002 ; C. Beck, 2006; CT. Beck, Records, and Rice, 2006; C. T. Beck, 1992, 1993, 1999b, 2002c, 2003, 2004b; Wood, et al., 1997). One serious issue found in the nursing research literature regards sample descriptions. Few studies describe the composition of the sample, and few African-American women are included in the sample. The research findings have not specifically addressed PPD in AfricanAmerican women (Amankwaa, 2000). The literature also reveals that there are no qualitative studies focused specifically on postpartum depression among African-American women. No extant theories were located that

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explained the nature of postpartum depression in African-American women. Lack of culturally sensitive and scientific nursing research critically impacts the delivery of culturally sensitive, appropriate, congruent, and meaningful care to African-American women in the postpartum period (Amankwaa, 2000). Noteworthy is that a lack of culturally appropriate information and understanding may lead to misdiagnosis or the possibility of inappropriate treatment by health care providers. Most importantly, strategies for the prevention of PPD cannot be designed or implemented if risk factors and similarities and differences between African-American and other women are unknown (Amankwaa, 2000).

SECTION V

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Postpartum Depression Health Policy Implications: Addressing Barriers to Prevention and Treatment A Health Policy Analysis Using the Longest Model Postpartum depression is one of the most prevalent conditions of childbearing women. Postpartum Support International states that in the United States, as many as 800, 000 new mothers each year may be affected (Postpartum Support International, 2008b). Despite advances in medical care and risk assessment, diagnosis of PPD remains difficult. Practitioners do not routinely screen for PPD, and many women do not present with symptoms at the time of the 6-week postpartum checkup. Women relate their feelings of sadness to hormones and therefore fail to report symptoms (Sobey, 2002). Practitioners, on the other hand, relate the symptoms to anxiety in caring for a new baby and fatigue due to the birth. Compounding these factors include inadequate insurance coverage, if any, for treatment of PPD. Additional barriers to seeking treatment are cultural and social factors, transportation, and childcare issues (Sobey, 2002). Complicating this is the lack of sufficient knowledge about PPD within the healthcare discipline, lack of understanding cultural beliefs, practices, and expressions of depression, and lack of communication between the woman and her healthcare provider. An understanding of the mother’s culture is critical to providing appropriate care, and understanding cultural factors have a significant impact on the way care is delivered. Health policy which takes into account the cultural lifeways of mothers during the postpartum period needs to be analyzed and re-evaluated. Health policy reform needs to be directed toward a universal definition of the postpartum period by healthcare providers and insurers so that culturally specific care for mothers and their newborn babies can be provided. Based on history, an emphasis on developing a trusted relationship between the patient and healthcare provider needs to be addressed before African American women would seek professional mental health care services on a routine basis. Using the Longest Model (Appendix II), we can analyze postpartum depression and develop health policy legislation (Longest, 2006).

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Defining the Problem: Public Policy Barriers to Prevention and Treatment The societal effects of PPD have been well publicized in the media (CNN, 2005). In order to institute policies that address PPD, it is important to understand the political, social, medical, and cultural barriers that are present in the United States. Beck posits that eliminating barriers to early detection and treatment are the cornerstones of treatment for this tragic illness (C. T. Beck, 1992). After examination of the cross-cultural literature, Stern and Kruckman (1983a) indicated six common elements that are present in the social structuring of the postpartum period. Stern and Kruckman (1983a) hypothesize that there is a direct relationship between the lack of a structured postpartum period and the risk for developing postpartum depression (Stern and Kruckman, 1983a). Therefore, it is suggested that these elements be used as a guide to develop postpartum healthcare programs for new mothers. Additionally, legislation that supports mental and physical health parity is needed, as well as research to support adoption of a more cohesive postpartum care model in the US. Education and information on culturally sensitive screening tools and treatment protocols is important to increase cultural specific knowledge for maternal child healthcare providers who care for African American women. Other initiatives might include: 1. Educational campaigns for public and healthcare providers 2. Protocols that support integration of behavioral health with OB care. 3. Establishment of community based PPD care services funded by the public and private sector. 4. Government support via funding supporting PPD initiatives for all women. 5. Legislation that mandates PPD screening for all women and new mothers.

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Major Barriers to Prevention and Treatment 1. Lack of educational programs regarding PPD for the public, healthcare providers and expectant parents. 2. Lack of routine screening for PPD either in the prenatal or postpartum period. 3. Lack of parity between insurance coverage for mental and physical illness. 4. Lack of access to mental health services. 5. Lack of a postpartum care model in the U.S. that incorporates screening and follow up for PPD. 6. Cultural and social stigma associated with negative feelings and motherhood causing women to suffer in silence.

Public Sector Disparity in Services It is well known that many employers and insurance companies discriminate against those persons with mental illness, and reimbursement for mental health treatment is not on par with that for physical treatment (Frank, McGuire, Regier, Manderscheid, and Woodward, 1994; Mayes, 2004). This disparity severely limits and impacts mental health care and is the primary barrier to prevention and treatment of PPD (Frank, et al., 1994; Mayes, 2004). Many insurance companies deny approval for mental health services, or require that patients pay

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higher deductibles or co-payments for mental health services (Frank, et al., 1994; Mayes, 2004). While some insurance companies do not restrict what physician one can choose to see for medical issues, they do require pre-authorization for mental healthcare services and provide you only with specific names of mental health providers that they will reimburse for services (Sobey, 2002). Legislation is needed to achieve mental health parity with physical illness. In almost all mental health programs, there is no specific coverage for PPD compared to coverage provided for general depression or psychosis (Sobey, 2002).

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Accessing Mental Health Services Availability of public assistance for mental health care varies from state to state. Medicaid programs are not mandated by Federal law to provide mental health services (Sobey, 2002). Noteworthy is that when mental health services are provided for by State agencies, a large amount of government money is earmarked for severe mental illnesses such as schizophrenia or psychoses, not for prevention or treatment of PPD (Sobey, 2002). A 1996 report of funding patterns revealed that public sector costs for seriously mentally ill patients were $2,430 per year, only about $40 per year per capita was available for treatment of PPD (Frank, et al., 1994). The Surgeon General’s report discusses mental health expenditures in the United States, but does not address expenditures for postpartum depression treatment (Satcher, 1999). The costs for mental health parity are lower than what some believe ("U.S. Department of Health and Human Services," 1999). The results of cost-benefit analyses in five states with parity laws in effect for a year revealed that there was a small effect on premiums. The results revealed that costs actually declined in Texas, Maryland and North Carolina when managed health care was combined with parity laws ("U.S. Department of Health and Human Services," 1999). Dichotomy in Postpartum Care Models: United States versus the United Kingdom The second major barrier to preventative care for PPD is the disjointed model of maternity care prevalent in the United States today. Routine screening for PPD is not provided in all states in the U.S. If PPD is suspected or detected, there is no systematic treatment protocol. Obstetricians will prescribe an antidepressant for women’s complaints of feeling blue, but do not routinely refer to a mental healthcare provider (Dr. Kathy Kim, Obstetrician, personal communication, September 2004). Nurses do not routinely assess for PPD on admission to LandD or during the postpartum stay, in spite of the fact that they are in a pivotal position to do so. PPD symptoms frequently do not present until well after the 6 week postpartum checkup; therefore follow-up for assessment is usually absent (C. T. Beck, et al., 1992; Sobey, 2002). The U.K. postpartum model of care differs dramatically from that of the U.S. The midwife is the major healthcare provider for pregnant women in the U.K. and has a more collaborative relationship with the woman (Sobey, 2002). A randomized experimental control design study by MacArthur et al. (2002) was conducted in 2002. After delivery, the midwife made seven home visits until 10-14 days after birth (Sobey, 2002). Care was individually tailored to meet the needs of the women and the home visits were extended to 10 -12 weeks if needed. Symptoms of PPD were assessed at the first postpartum home visit, again at 10 days, 28 days and at the discharge consultation at 10 -12 weeks postpartum (Sobey, 2002). The Edinburgh Postnatal Depression Screening Scale (EPDS) was used at day 28 and at the

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discharge consultation. The results revealed that the women’s mental health status was significantly better in the intervention group (redesigned care group) than the control group (the usual specified number and times of midwife and GP visits) (Sobey, 2002). Care in the U.K. has been redesigned to reflect this care model (Sobey, 2002).

Policy Formulation Legislators and elected officials representing the public are primarily responsible for this stage of policy development that includes agenda setting, window of opportunity and development of legislation (Longest, 2006).

Agenda Setting: Problems, Possible Solutions, Political Circumstances In this phase, problems that lead to legislation must be considered by legislators to be important, urgent and of public interest with viable affordable solutions. Strategies include lobbying, litigation and shaping public opinion (Edgett Collins, 2006). Suggested potential solutions regarding postpartum depression include: • • •



• • •

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• •

Legislation that supports mental and physical health parity. Research that supports assessment of and adoption of a more cohesive model of postpartum care in the U.S. Healthcare practitioners, including maternal child nurses, need to be provided with education and information on culturally sensitive screening tools and treatment protocols for PPD. Use of screening tools with increased sensitivity and specificity rates for PPD, such as Beck’s PDSS and PDSS-S (C. Beck and R. K. Gable, 2001; C. T. Beck, 2005; C. T. Beck and Gable, 2000; C. T. Beck and R. K. Gable, 2001). Educational campaigns for the public and healthcare practitioners regarding PPD. Protocols that support the integration of behavioral health with primary OB services in the prevention, diagnosis, and treatment of PPD. Establishment of community based postpartum services, led by maternal child nurses, obstetricians, and mental healthcare providers and funded by private and public monies to offer accessible options to women for care of PPD. Government support via funding and programs to provide support for PPD initiatives for all women. Legislation to mandate depression screening for all pregnant women and new mothers both in public and private health sectors with appropriate referrals as indicated by test results.

Window of Opportunity The window of opportunity for agenda setting that leads to legislation may appear unexpectedly. Newspaper articles and books detailing the personal struggles of celebrities facing postpartum depression have caused further momentum for legislative action (Osmond, 2002; Shields, 2005). The Andrea Yates tragedy pointed out the impact of postpartum depression in our society (CNN, 2005).

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Policy Formulation: Favorable Political Circumstances The political climate is ripe for change. This is due in part to Hollywood celebrities such as Brooke Shields and Marie Osmond coming forward, both publicly and in print, about their experiences with PPD (Osmond, 2002; Shields, 2005). In 2005 Mary Jo Codey, wife of acting Governor Codey of New Jersey, came forward with her personal experience with PPD (M. Codey, 2005). The Amanda Yates and Melanie Blocker Stokes stories have brought this tragic illness to the public and political forefront with demands for legislation regarding health services and public and healthcare educational campaigns for PPD. Maternal-child nurses whose main role is to educate new mothers, are in a key position to make an impact toward early recognition and treatment of PPD.

Federal Role in PPD In 2002, The Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB) launched a PPD initiative in collaboration with the National Institute of mental health, the Substance Abuse and Mental Health Services Administration, the American College of Obstetricians and Gynecologists and Healthy Start to develop screening and referral programs (Singhal, 2005). In the past several years, legislation was introduced into Congress to provide research and healthcare services for PPD and postpartum psychosis; however, no legislative action has taken place to date (Singhal, 2005). The MCHB in 2004 awarded $250,000 to promote education for perinatal awareness for mothers and families (Singhal, 2005). Pending Legislation … Bridge to Policy Implementation Phase Melanie Blocker-Stokes Postpartum Depression Research and Care Act, H.R.846 – Introduced into the House of Representatives, 108th Congress, by Congressman Bobby Rush (D) February 13, 2003. Goal: to provide research on and services for women suffering from PPD and psychosis. The bill was reintroduced to 109th Congress as H.R.1940 on April 27, 2005 and was referred to the House Subcommittee on Health May 13, 2005 (Postpartum Depression Alliance of Illinois, 2003).

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H.R. 20 - Melanie Blocker-Stokes Postpartum Depression Research and Care Act. On October 15, 2007, after six long years, The U.S. House of Representatives passed legislation introduced by Congressman Bobby L. Rush (D-Ill) – H.R. 20, The Melanie Blocker Stokes Postpartum Depression Research, and Care Act by a vote of 382-3. The bill was first introduced in 2001 after the tragic death of Melanie Blocker Stokes, a 40-year old African American who died from suicide after a long battle with postpartum psychosis. On July 23, 2008, Senate Majority Leader Reid introduced a package of bills titled the Advance America’s Priorities Act which includes the Melanie Blocker Stokes MOTHERS Act. Senators Robert Mendez (NJ) and Richard Durbin (IL) have been working diligently with Majority Leader Reid and Chairman Edward Kennedy to promote passage of this legislation. Postpartum Support International has taken an active role in promoting education regarding postpartum depression and in enlisting support for passage of legislation.

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S.450 - the Melanie Stokes Postpartum Depression Research and Care Act - was identical to the Senate bill that was introduced in the 107th Congress. S.450 would have amended the Public Health Service Act to provide for research on and services for individuals with postpartum depression and postpartum psychosis (Postpartum Depression Alliance of Illinois, 2003).

Summary of the Melanie Blocker Stokes MOTHERS Act Postpartum Support International (Postpartum Support International, 2008a) issued a final summary in their legislative updates: •



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The Melanie Blocker Stokes MOTHERS Act, sponsored by Senators Menendez, Durbin, and Snowe, will help provide support services to women suffering from postpartum depression and psychosis and will also help educate mothers and their families about these conditions. In addition, it will support research into the causes, diagnoses, and treatments for postpartum depression and psychosis. (Postpartum Support International, 2008a, p. 3) Mental Health Equitable Treatment Act of 2001, S.543 - A bill in the 108th Congress introduced by late Senator Paul Wellstone (S-Minn.) and Senator Pete Domenici (RNM) would expand the landmark Mental Health Parity Act of 1996, by expanding parity protections and preventing unfair financial or access limitations for mental health services (Mayes, 2004). The Health, Education, Labor and Pensions Committee unanimously voted to approve S.543 (Dorgan, 2001). According to Dorgan (2001), the General Accounting office reported that since the enactment of the MHPA, many insurance companies and employers continue to discriminate against persons with mental illness. Co-payments and/or deductibles are higher for mental health services than other services; limitations on inpatient and outpatient care continue; approval for mental health services continue to be denied, and a number of employers have ignored the law completely (Dorgan, 2001). Therefore, it was determined by two Senators and their 63 co-sponsors that further action is needed. Key provisions of this act: 1) expands parity protections in mental healthcare coverage and prevents the imposition of unfair financial or access limitations and 2) the act would guarantee equitable and fair mental health benefits. Mental Health and Substance Abuse Parity, H.R.162, H.R1194, H.R. 4066, H.R. 1424 and S.595 – Mental health and substance abuse parity legislation would require that employers offer coverage for mental health illness to be handled in the same way as physical illness (Office of Legislative Policy and Analysis, 2006). President Bush signed H.R. 1424 into law in 2008 (American Nurses Association, 2008).

State Parity Initiatives • Medicaid Reimbursement for PPD Screening – Implemented in December 2004. Illinois implemented reimbursement to providers who screen for PPD using a standardized screening that assesses for risks of PPD in pregnant women (Mulligan, 2005). • Oregon - The Oregon senate approved a bill, SB.1, in March 2005 requiring parity in health insurance coverage for mental health care at a level similar to other medical

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conditions. No other parity bill had passed either house of legislature and prospects for passage are uncertain (Mulligan, 2005).

State Initiatives Addressing PPD Several states have launched programs to address PPD: •









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Virginia – Department of health received a MCHB grant to launch a project entitled “The 3 Ps of Perinatal Depression: Perinatal Health, Provider Education and Public Awareness (Zoller, 2005). Goal: to develop a web-based curriculum for healthcare providers to identify PPD and make referrals (Zoller, 2005). Texas – In 2003, the Legislature passed a bill (HB.341), also known as the Andrea Pia Yates Bill, requiring providers, hospitals and birth centers that offer prenatal care services to provide women with a list of resources that provide PPD counseling and assistances (Singhal, 2005). The resource list is maintained by the Texas Department of Health (Texas Department of Health, 2004). Pennsylvania – The Pennsylvania Department of Health in collaboration with Healthy Start and local Title V projects formed the Pennsylvania Perinatal Partnership that provides for educational activities for the general public regarding perinatal depression services; also develops strategies aimed at eliminating barriers between physical and mental health care systems (Singhal, 2005). Pennsylvania – HB.1488 – legislation cosponsored by Rep. Kathy Watson (RBucks/144th). Goal: help new mothers cope with prenatal and PPD. Passed the Pennsylvania House of Representatives on May 19, 2005 (Pennsylvania House Republican Caucus, 2005). Washington State – SB.5898 – signed into law on May 9, 2005 by Governor Christine Gregoire authorizing the Washington State Postpartum Depression (PPD) Awareness Campaign. Goal: to address mental health issues affecting women, their children, partners and families during pregnancy and postpartum (Council for Children and Families Washington, 2006). California – ACR.51 – Legislative council proclaimed May 2003 as Postpartum Mood and Anxiety Disorder Month in California. Goal: to explore ways to improve access to women’s mental healthcare at state and local levels, and to increase awareness of PPD, use of screening tools and availability of treatment and support services (Koretz, 2002). California – AB 2317 – September 28, 2006 – was vetoed by the Governor. Legislator Paul Koretz, has been a long standing sponsor of PPD awareness. California incorporated PPD awareness into previous passed legislation pertaining to maternal child health (Postpartum Support International, 2008b). New Jersey – July 28, 2005 – New Jersey’s First Lady Mary Jo Codey launched a statewide educational campaign designed to bring public awareness to PPD and the available resources for women and their families. The campaign is entitled “Recognizing Postpartum Depression: Speak Up When You’re Down.” The campaign featured Mrs. Codey who communicated her personal experience with PPD and bipolar disease and encouraged other women to seek treatment (M. Codey, 2005).

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New Jersey State of the State Address January 11, 2005: Codey's Plan to Provide Postpartum Wellness Services to Uninsured Mothers (R. Codey, 2005): 1. New Jersey will be the first state in the nation to commit resources to uninsured new mothers for postpartum depression screenings and treatment. 2. Free mental health screenings and treatment to uninsured and underinsured new mothers. 3. Uninsured and underinsured new mothers would be referred to existing community behavioral health agencies for assessment and each would be eligible to receive mental health treatment. 4. Provide funding to DHSS for a medical education campaign for physicians, midlevel practitioners, and nurses designed to recognize the signs and symptoms of PPD. 5. The educational campaign would enable the DHSS to work with nurses, midlevel practitioners, physicians, and organizations to develop a program to enhance the education of medical providers regarding PPD. New Jersey – April 13, 2006 - S 213 that was introduced by Richard Codey, State Senate

President, is signed into law by New Jersey Governor Corzine (D), and is known as the Postpartum Depression Law. This legislation requires health care professionals providing Prenatal care to educate women and their families about postpartum depression (Postpartum Support International, 2008b).

Policy Implementation Phase: Rulemaking and Policy Operation

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In this phase, the responsibility for policymaking moves from the legislative branch of government to the executive branch (Edgett Collins, 2006). The legislative branch enables agencies to conduct the rulemaking that is necessary for the implementation of policy and/or law. According to Longest: …policy implementation begins with rulemaking, which is the establishment of the formal rules and regulations necessary to fully operationalize the intent embedded in public law. The second set of activities in Policy implementation is association with the operation of public laws.(Longest, 2002, p. 217)

Policy Feedback: Bridge between Implementation and Modification The Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN) April 22, 2005 position statement called the Texas legislation H.B.3411 “crucial to the health and lives of hundreds of Texas women and their children….” (Association of Women's Health Obstetric and Neonatal Nurses (AWHONN), 2005 ). “The bill would investigate the costs and benefits of providing 12 months of mental health services to Texas women on Medicaid who are diagnosed with PPD” (Association of Women's Health Obstetric and Neonatal Nurses (AWHONN), 2005 ) AWHONN also states that nurses who work with pregnant women, new mothers and newborns should be familiar with and integrate screening protocols and educational opportunities for staff and client education regarding PPD. These should be

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incorporated into their standards of care practices for prenatal and postpartum women (Association of Women's Health Obstetric and Neonatal Nurses (AWHONN), 2005 ). On a State level, 36 states have enacted mental health parity laws (Mayes, 2004), and while there are variations, they do prohibit discrimination between mental health and physical disorders (Mayes, 2004). It is broadly recognized that the population of new mothers is in need of mental health services. Research supports the data that mental health issues are present in the pre and postpartum periods (Mayes, 2004). According to Richard G. Frank, Ph.D., noted scholar and mental health expert at Harvard, postpartum women without severe depression may have limited service needs (Mayes, 2004).

Legislation: The Bridge between Policy Formulation and Policy Implementation The actual enactment of legislation is the bridge between policy formulation and policy implementation, according to Suzanne Edgett Collins, Ph.D., JD, and the journey from idea to legislation is a long road fraught with peril encompassing approximately 16 steps (Edgett Collins, 2006) (Appendix I).

The Mental Health Parity Act of 1966 •

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President Clinton signed this law on September 26, 1997. The legislation, introduced by Senators Pete Domenici and Wellstone ended the practice of providing less insurance coverage for mental illness than for physical illness. Through various Congressional Amendments, the sunset date was extended to December 2004 (Mayes, 2004). The MHPA addresses discrepancies in healthcare coverage for physical versus mental healthcare. The law prohibited employers from imposing annual or lifetime dollar limits on mental health care coverage that are more restrictive than those for medical/surgical coverage. Various congressional amendments pushed the sunset date under ERISA (Employee Retirement Income and Social Security Act) and the PHS (Public Health Service Act) that bring parity to copayments for mental health visits similar to co-payments for physical conditions (Mayes, 2004). In October 2008, Congress passed Mental Health Parity into Law. "By a vote of 263 to 171, the House of Representatives and Senate passed the bipartisan legislation known as the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Act of 2008..." This historic legislation prohibits employers and insurers from imposing different limits on mental health and substance abuse than those set forth for other physical health conditions (ANA, 2008, p. 1).

Key Provisions • •

Lifetime and annual limits are equated for both mental and physical healthcare services. Existing state parity laws are not preempted by federal law.

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Law applies to those employers that offer mental health coverage; it does not mandate employers offer such coverage. The law allows for cost shifting mechanisms, e.g., adjusting limits for inpatient and outpatient days and visits; raising co-insurance deductibles and modifying definition of medical necessity. The law has a small business exemption that excludes businesses with 50 or less employees.

Status and Outlook for Mental Health Parity Legislation •







H.R.162 – introduced by Representative Marge Roukema on January 3, 2001 was referred to the House Ways and Means Committee (Office of Legislative Policy and Analysis, 2006). H.R.1194 – Harold Hughes-Bill Emerson substance Abuse Treatment Parity Act of 2001 – Introduced by Representative Jim Ramstad on March 22, 2001 has been referred to the House Ways and Means Committee (Office of Legislative Policy and Analysis, 2006). H.R.4066 – the Mental Health Equitable Treatment Act of 2002 – introduced by Representative Marge Roukema on March 20, 2002 has been referred to the House Energy and Commerce Committee (Office of Legislative Policy and Analysis, 2006). S.595 – the Fairness in Treatment: the Drug and Alcohol Addiction Recovery Act of 2001 – introduced by Senator Wellstone on March 22, 2001 – has been referred to the Senate Health, Education, Labor, and Pensions Committee. No further action was taken on this legislation by the 107th Congress; it is anticipated that it will be reintroduced in the 108th Congress (Office of Legislative Policy and Analysis, 2006).

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Policy: Melanie Blocker-Stokes Postpartum Depression Research and Care Act H.R.846, H. R.1940 and S.450 On June 11, 2001, Melanie Blocker-Stokes, an African American, lost her battle with PPD and jumped to her death from a 12-story hotel window ledge, four months after the birth of her daughter. Congressman Bobby L. Rush from Illinois first introduced Bill # 2380 into Congress on June 28, 2001. H.R.846, the Melanie Blocker-Stokes Postpartum Depression Research and Care Act was identical to legislation introduced in the 107th Congress (Office of Legislative Policy and Analysis, 2006). H.R.846 required the Secretary of Health and Human Services (HHS), acting through the National Institutes of Health (NIH) to expand PPD research and other related activities. This bill also required the NIMH to coordinate with the NIH regarding PPD activities and conditions (Office of Legislative Policy and Analysis, 2006). The NIMH would be required to conduct research and epidemiological studies, educational programs and diagnostic studies to find a cure for PPD.

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S.450, the Melanie Stokes Postpartum Depression Research and Care Act, was identical to the Senate bill introduced to the 107th Congress. S.450 would amend the Public Health Service act by requiring research on and services for women with PPD. Noteworthy is that S.450 would require the Secretary of the HHS, acting through the NIH, Administrator of the Substance Abuse and Mental Health Services Administration and other Federal agencies or organize national meetings to develop a research plan addressing PPD and postpartum psychosis (Office of Legislative Policy and Analysis, 2006). After formulating a research plan the HHS, acting through the NIH would also be required to intensify research and activities regarding PPD so that the established plan could be implemented. On May 5, 2005 H.R.1940, The Melanie Blocker-Stokes Postpartum Depression Research and Care Act was introduced to the 109th Congress by Congressman Bobby Rush.

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Policy Modification Phase: Potential Impact of Legislation As with all legislative efforts, the potential outcomes of both policies continue to evolve. “Policymaking is an imperfect and iterative process” and policy modification is the major part of policymaking (Edgett Collins, 2006, p.14). The goal of this phase is the “maximization of positives and the minimization of negatives” (Edgett Collins, 2006, p.15). According to Faenza (2001; Singhal, 2005) President and CEO of the National Mental Health Association, parity has proven cost effective in Vermont, Maryland and Minnesota. Health insurance costs increases less than one percent after being implemented. According to a report by the NMHA to Congress, only 3% of all U.S. companies reported an increase in health insurance costs of less than 1% after one year of adopting parity (Faenza, 2001). According to Faenza (2001), this legislation is a huge step towards providing accessible and affordable mental health care. “The goal of mental health parity is social justice…we know that parity is affordable and effective…now we need to act…by establishing comprehensive health parity across the country” (Faenza, 2001, Para. 4). According to Congressman Bobby Rush, he will continue to fight for the passage of the Melanie Blocker-Stokes Postpartum Depression Research and Care Act. "With this bill, my colleagues and I… believe ultimately … (we) are saying to this nation that no woman need suffer in shame or silence if she's confronted with feelings of depression following the birth of a newborn…” (The Postpartum Resource Center of New York, 2005, Para. 2). Rush stated that postpartum depression does not discriminate against race, class or income and that his bill ensures the entire family unit is healthy and prosperous (The Postpartum Resource Center of New York, 2005) Congressman Rush indicated he was optimistic this time around with reintroduction of the bill in the 109th Congress due to more women speaking out and his colleagues have stepped up support. In September 2004, the Subcommittee on Health heard testimony from Carol Blocker, mother of Melanie Blocker during the hearing entitled “Improving Women’s Health: Understanding Depression after Pregnancy.” This bill has 50 Congress members as co-sponsors, and has the support of Postpartum Support International and other national organizations (The Postpartum Resource Center of New York, 2005). A major impact of legislation will be new policies that incorporate the findings from evidence-based research on

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PPD screening, diagnosis treatment interventions and affordable access to mental health care that will lead to reduced rates and less severe symptoms of PPD.

RECOMMENDATIONS/RATIONALE In summary, policies need to be instituted to address the devastating effects of PPD on the family and society. Actions that need to be implemented to effectively change policy are: • • •





• • •

Legislation that supports mental health parity with physical illness. Projects that demonstrate to insurance companies and lawmakers that a more cohesive postpartum care model is cost effective. All healthcare practitioners, particularly maternal child nurses, need to have continuing education regarding effective PPD screening tools, treatment regimens and culturally appropriate interventions for our diverse patients. PPD is not based on one variable; therefore continued research is needed for sociocultural causes of PPD in addition to the biological, physiological, and psychological causes. Early screening needs to be implemented in the antepartum period to assess for risk factors of PPD. Beck states that early diagnosis is the cornerstone for treatment of this tragic illness (C. T. Beck, 1999b), and nurses are in a pivotal position to do so. A mandate for mental health benefits to be offered in health insurance plans. A collaboration of coverage in connection with Medicare or Medicaid Provisions for businesses with less than 50 employees.

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CONCLUSION Nurses are in a pivotal role to impact policy development and influence legislation regarding postpartum depression. Now is the time for nurses to become politically and professionally active to promote education to the public and other healthcare providers regarding this tragic illness, and to pressure legislators to act on pending legislation that will make a difference to mothers and to society. Silence is not golden in this case. The stigma of postpartum depression needs to be erased. Who better to take up this cause but maternal child nurses whose very role is the education and nurturing of pregnant women and new mothers? The United States today is more of a sizzling cauldron rather than a melting pot. Maternal child nurses care for patients from many diverse cultures. It is imperative that these nurses understand the cultural lifeways of their patients in order to deliver culturally competent, appropriate, and meaningful care. Leininger states that if care is not meaningful, it is not beneficial (Leininger and McFarland, 2002). The rite of passage of motherhood must be understood within the cultural context in order to deliver culturally appropriate care to mothers and their newborns. The future well-being of society demands that we do so.

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APPENDIX I SCHEMATIC: FROM IDEA TO LAW

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Reference: Suzanne Edgett Collins, Ph.D., JD. PowerPoint presentation.

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APPENDIX II THE LONGEST MODEL: STAGES OF HEALTH POLICY FORMULATION ON POSTPARTUM DEPRESSION

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Leininger, M. (2006). Culture care diversity and universality: A worldwide nursing theory (2nd ed.). Boston: Jones and Bartlett. Leininger, M., and McFarland, M. (2002). Transcultural nursing: Concepts, theories, research and practice (3rd ed.). . New York: McGraw-Hill. Logsdon, M. C., Birkimer, J. C., and Usui, W. M. (2000). The link of social support and postpartum depressive symptoms in African-American women with low incomes. MCN Am J Matern Child Nurs, 25(5), 262-266. Longest, B. (2002). Health policy making in the United States (3rd ed.). Chicago, Illinois: Health Administration Press. Longest, B. (2006). Health policymaking in the United States (4th ed.). Chicago, IL.: Health Administration Press. MacArthur, C., Winter, H., Bick, D., Knowles, H., Lilfor, R., and C., H. (2002). Effects of redesigned community postnatal care women's health 4 months after birth: a cluster randomized control trial. Lancet, 359, 472-476. Mayes, G. (2004). Beyond the examining room: Mental health parity should benefit new mothers. Medscape OB/Gyn and Women's Health Retrieved 8/19/2008, 2008, from http://www.medscape.com/viewarticle/472372?src=search. Mead, M., and Newton, N. (1967). Cultural patterning of perinatal behavior. In S. Richardson, Guttmacher, AF. (Ed.), Childbearing: It's social and psychological aspects. Baltimore: Williams and Wilkins. Meleis, A. (2005). Theoretical nursing: Development and progress (3rd ed.). New York: Lippincott Williams and Wilkins. Mental health: A report of the surgeon general. (1999). Retrieved January 26, 2002, 2002, from http://www.surgeongeneral.gov/Library/MentalHealth/loc.html Mercer, R. (1985). The process of maternal role attainment over the first year. Nursing Research, 34, 198-204. Moses-Kolko, E. L., and Kraus Roth, E. (2004). Antepartum and postpartum depression: Healthy mom, healthy baby. Journal of the American Medical Womens Association, 59(3), 181-191. Mulligan, K. (2005). States try diverse solutions to health funding crisis. Psychiatric News, (9), pp 24-28. Retrieved from http://pn.psychiatryonline.org/cgi/content/full/40/9/24. Murray, D., and Cox, J. (1990). Screening for depression during pregnancy with the Edinburgh Depression Scale (EPDS). Journal of Reproductive and Infant Psychology, 8, 99-107. Murrell, N., Smith, R., Gill, G., and Oxley, G. (1996). Racism and health care access: A dialogue with childbearing women. Health Care for Women International 17, 281-287. Nahas, V., and Amasheh, N. (1999). Culture care meanings and experiences of postpartum depression among Jordanian Australian women: a transcultural study. J Transcult Nurs, 10(1), 37-45. Nahas, V., Hillege, S., and Amasheh, N. (1999). Postpartum depression. The lived experiences of Middle Eastern migrant women in Australia. J Nurse Midwifery, 44(1), 65-74. O'Hara, M. W., and Swain, A. (1996). Rates and risk of postpartum depression: A metaanalysis. International Review of Psychiatry, 8, 37-54. Oakley, A., and Chamberlain, G. (1981). Medical and social factors in postpartum depression. Journal of Obstetrics and Gynaecology 1, 181-187.

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Oates, M. R., Cox, J. L., Neema, S., Asten, P., Glangeaud-Freudenthal, N., Figueiredo, B., et al. (2004). Postnatal depression across countries and cultures: a qualitative study. Br J Psychiatry Suppl, 46, s10-16. Office of Legislative Policy and Analysis (2006, 8/19/2008). Mental health and substance abuse parity Retrieved 3/26/2006, 2006, from http://olpa.od.nih.gov/tracking/ senate_bills/default.asp Osmond, M. (2002). Behind the smile: My journey out of postpartum depression. New York: Warner Books. Pennsylvania House Republican Caucus (2005). Legislation would provide education of prenatal, postpartum depression to expectant moms. Retrieved 1/26/06. from http://www.pahousegop.com/index.cfm?ContentID=5587andParentID=117andSectionID -32. Posmontier, B., and Horowitz, J. A. (2004). Postpartum practices and depression prevalences: Technocentric and ethnokinship cultural perspectives. The Journal of Transcultural Nursing, 15(1), 34-43. Postpartum Depression Alliance of Illinois (2003). Melanie Blocker-Stokes postpartum depression research and care act Retrieved 1/24/06, 2008, from http://www.ppdil.org/melanieblockerstokesbill.htm Postpartum Support International (2008a). Final summary of the Melanie Blocker Stokes MOTHERS Act Retrieved 8/18/2008, 2008, from http://postpartum.net/legislativeupdates/ Postpartum Support International (2008b). Legislative updates: Understanding postpartum depression Retrieved 8/18/2008, 2008, from www.http://postpartum.net/legislativeupdates/ Radloff, L. (1977). CES-Depression scale (CES-D). Applied Psychological Measurement, 1, 385-401. Satcher, D. (1999). Mental health: A report of the Surgeon General Retrieved 8/19/2008, 2008, from http://www.surgeongeneral.gov/library/mentalhealth/chapter1/sec1.html Shields, B. (2005). Down came the rain: My journey through postpartum depression. California: Hyperion. Sichel, D., and Driscoll, J. (2000). Women's moods: What every woman must know about hormones, the brain, and emotional health. New York: HarperCollins Publishers. Singhal, M. (2005). The role of state public health in perinatal depression Retrieved 8/19/2008, 2006, from http://www.astho.org/ Sleutel, M. (2002). Intrapartum nursing: Integrating Rubin's framework with social support theory. JOGN 32(1), 76-82. Small, R., Lumley, J., and Yelland, J. (2003). Cross-cultural experiences of maternal depression: associations and contributing factors for Vietnamese, Turkish and Filipino immigrant women in Victoria, Australia. Ethn Health, 8(3), 189-206. Sobey, W. (2002). Barriers to postpartum depression prevention and treatment: A policy analysis. Journal of Midwifery and Women's Health, 47(5), 331-336. Spinelli, M. G. (2006). Perspectives on postpartum depression and the Andrea Yates Trials Retrieved April 22, 2008, 2008, from http://www.postpartum.net/spinell-cbs.html Spitzer, R., Endicott, J., and Robins, E. (1975). Research diagnostic criteria. Instrument No. 58. New York: New York State Psychiatric Institution.

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Stern, G., and Kruckman, L. (1983a). Multi-disciplinary perspectives on post-partum depression: An anthropological critique. Social Science and Medicine, 17, 1027-1041. Stern, G., and Kruckman, L. (1983b). Multi-disciplinary perspectives on post-partum depression: an anthropological critique. Soc. Sci. Med, 17(15), 1027-1041. Tentoni, S. C., and High, K. A. (1980). Culturally induced postpartum depression: a theoretical position. JOGN Nurs, 9(4), 246-249. Texas Department of Health (2004). Pregnancy, parenting and depression. Retrieved 8/19/08. from www.dshs.state.tx.us/mch/default.shtm. The Postpartum Resource Center of New York (2005). U.S. Rep. Bobby L. Bush continues fight for postpartum depression legislation Retrieved 1/26/2006, 2006, from http://www.postpartumny.org/advocacy.htm. U.S. Department of Health and Human Services (USDHHS) (2000). Healthy people 2010: Understanding and improving health (2nd ed). Waite, R., and Killian, P. (2007). Exploring depression among a cohort of African American women. American Psychiatric Nurses Association, 13(3), 161-169. Warren, B. (1994). Depression in African-American women. Journal of Psychosocial Nursing, 32(3), 29-33. Wood, T., Droppleman, P., and Meighan, M. (1997). The downward spiral of postpartum depression. The American Journal of Maternal Child Nursing, 22(6), 308. World Health Organization (1993). Composite Diagnostic International Interview - Version 1.1. Zigmond, A., and Smith, R. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavia, 67, 361-370. Zoller, M. (2005). Virginia department of health receives $250,000 grant to alleviate perinatal depression, 2006, from www.vdh.state.va.us/news/PressReleases/2004/110404 Perinatal.asp. Zung, W. W. K. (1965). A self-rating depression scale. Archives of General Psychiatry, 12, 63.

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In: Black Women’s Health: Challenges and Opportunities ISBN 978-1-60876-453-2 Editor: Yvonne Wesley © 2009 Nova Science Publishers, Inc.

Chapter 8

BLACK WOMEN, STRESS AND PREGNANCY Yvonne Wesley

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ABSTRACT Stress has been attributed to poor health outcomes for many years. This illusive concept has been the subject of many studies. However, conceptual and empirical definitions of stress vary among authors. Moreover, intervening variables such as social support and coping may blur the effects of stress. The timing of when stress is measured has also been called into question. Nevertheless, the topic of stress continues to be relevant, especially for pregnant Black women. Seen as being strong and the backbone of many Black families, Black women are often times champions of tradition. They are also described by others as doubly oppressed. With race and gender not playing in their favor, Black women are known to have numerous sources of stress. Contemporary Black women authors who write fiction for and about Black women reveal many aspects of the Black experience. However, the link between fiction and empirical findings remains to be described especially in regard to stress and its effect on Black women’s health. Specifically, stress has been considered a risk factor for preterm labor that may help explain disparities in birth outcomes among Black and White women. But, what are the causes of stress for Black women as compared to other women? As we learn more about the relationship between psychological stress and preterm birth, we find that more researchers have linked physiological changes due to stress. Moreover, Collins (2003) speculates that health outcomes are mediated by stress perceptions. Rowley and colleagues (1993) suggests that the elimination of disparities in birth outcomes will require a multidisciplinary approach, one that illuminates biologic pathways, stressors, and social environment. The purpose of this chapter is to provide an overview of the literature discussing stress among Black women, and its relationship to preterm labor in this group of women. The chapter also provides evaluation results from a community based program designed to reduce stress among pregnant Black women and offers possible research questions for the future.

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INTRODUCTION Stress has been attributed to poor health outcomes for many years (Antonovsky, 1987). According to Antonovsky stress can have a salutary effect if it can be avoided. Viewing life from a salutogenic orientation, Antonovsky explains that research questions and data analysis should be seen from a health promotion perspective rather than a pathologic paradigm. With a mindset that asks the question, ‘how can I explain health rather than disease?’ Antonovsky offers a health-ease rather than a ‘dis-ease’ model which places individuals on a continuum. Within his model of health-ease the construct ‘sense of coherence’ is described. According to Antonovsky, ‘sense of coherence’ determines an individual’s place on the continuum. Antonovsky explains that when the individual comprehends the stimuli, has the resources to manage the demand, and the person is engaged, [suggesting that they care] then the person has a strong ‘sense of coherence’ and can cope with stress and remain healthy. A person with a poor ‘sense of coherence’ is stressed and ends up on the disease end of the continuum. Antonovsky’s (1987) perspective on stress calls into question three factors, 1) how do Black women comprehend a stimuli, 2) what resources do Black women have to manage demands in their life and 3) how engaged are Black women with the stimuli. NealBarnett (2003) suggests that Black women handle stress different than White men or women. Particularly, for Black women, the measures of stress that tap into their unique experience may provide better insight into relationships between stress and health outcomes. Researchers report that religious involvement significantly reduces stress for African American females more so than for males (Grant, O’Koon, Davis, and Roache, 2000). Moreover, Collins (2003) suggests that stress is related to life expectancy. With a review of the leading causes of death among American Black women, Collins implies that the body’s response to stress is related to cardiovascular disease, as well as cancer and malfunctions with a Black woman’s reproductive system. Classic work from authors of self-help manuals such as bell hooks (1993) and Julia Boyd (1995) also depict the high stress levels in a Black woman’s life. Ms. Boyd alludes to the notion that Black women are strong, and continue to try to live up to that claim. As described by bell hooks, stress is the hidden killer that underlies all the major health troubles of Black women. Similar to Antonovsky’s (1987) paradigm, hooks contends that most of Black women’s stress comes from trying to do more with fewer resources. In hooks attempt to help Black women with wholeness, she demonstrates that Black women are not sure how they found themselves in the situation of limited resources. Certainly they have forgotten how to embrace a life without stress (hooks, 1993). Questions that explore the relationship between stress and birth outcomes among Black women have surfaced in a number of empirical studies (Mackey, Williams, and Tiller, 2000; Mercer, Ahokas, Beazley, Klesges, Meyer, Carr, 2002; Ruiz, Fullerton, Brown, and Dudley, 2002; Dole, Savitz, Hertz-Picciotto, Siega-Riz, McMahon, and Buekens, 2003). Conversely, the tie between non-academic resources and scientific literature is virtually non-existent. However, the lived experiences of Black women presented in stories may, in fact, be more reality based than that which is depicted by empirical data. For Black women fiction writers, fiction may be non-fiction. In an essay posted on the internet, Nnedi Okorafor-Mbachu shares that life experience good or bad shape her short stories. http://theangryblackwoman.word press.com/2008/02/15/fiction-is-just-nonfiction-through-a-distorted-lens/ . Similar to Terry

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McMillan, these stories filled with drama and some trauma highlight stressors in Black women’s lives. A look at stress in a Black woman’s life during pregnancy may be a limited view. However, resources that take into account the whole experience of her life may add significant understanding of the problem. The website http://www.womensenews.org/ article.cfm?aid=3461 offers the concept ‘social capital’ as a partial solution to the disproportionate rate of preterm delivery among Black women. The question of stress and birth outcomes then involves the larger systematic structure of the woman’s living environment. For example, the number of households headed by Black women in the United States may be seen as a consequence of a larger systematic structure (Mullings, Wali, McLean, Mitchell, Prince, Thomas, and Tovar, 2001). The demands of household responsibility coupled with pregnancy require a multidimensional look at stress and the lives of Black women. Stress in general impacts health outcomes. Black women have been noted to have as much if not more stress than the general population. Birth outcomes related to stress appear to be a topic of discussion for both scientific and popular literature. Perhaps a closer look at a community based project designed to reduce stress among pregnant Black women will help shed more light on the problem. This chapter is divided into three sections. The first section covers stress in general, defining the link between psychological and physiological processes. The next section focuses on stress among Black women. Spelled out as drama in much of the popular literature, stress among women of African descent may be unique and may help explain some of disparity in health outcomes. The second section also differentiates men from women. Finally, the third section looks at stress among pregnant Black women and covers the outcomes of a government funded community based project.

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STRESS IN GENERAL During the 20th century, Hans Selye, Ph.D., (1936) a physiologist defined stress as the body’s nonspecific response to any demand. Noted to be the first to describe and label stress, Hans Selye (1956) outlined 3 stages. Simply stated, the first stage is, ‘alarm reaction’. In this stage the body prepares itself for ‘fight or flight.’ Next, adaptation develops. In this stage, a resistance to the stress is built. Finally, the stage of exhaustion occurs when the duration of the stress has been too long. Building on the work of Selye, Richard S. Lazarus, Ph.D., a highly regarded psychologist, referred to stress as any event in which demands exceed resources. At the heart of Dr. Lazarus's theory was the word appraisal. Before perceptions are built, Lazarus explains that people make routine, unconscious, evaluations of what is happening. Based on the appraisal of a given situation, stress becomes more of a person’s perceived strength of his or her resources than a person's actual situation (Lazarus and Folkman, 1984). Moving in the same direction as Selye and Lazarus, Antonovsky (1987) probed deeper into an individual’s sense of a situation. Antonovsky explains the multi-dimensional nature of an individual’s ‘sense of coherence’ (SOC). A term coined by Antonovsky, SOC is described as having eight different combination types based on 3 separate components; comprehension, manageability and meaningfulness. For example, a person could have high comprehension,

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and low manageability and meaningfulness, or the person could also be high on manageability and comprehension but low on meaningfulness. However, Antonovsky explains that it would be rare for a person to be low on comprehension and high on both manageability and meaningfulness. In addition, persons that are high on comprehension and low on manageability or meaningfulness are posited as moving toward the dis-ease end of a health continuum. According to the Antonovsky (1993) model, an individual needs 3 of the following components to cope with stress and remain healthy, these include: 1) an understanding of the stimuli [comprehension], 2) resources to manage the demand [manageability], and 3) caring or being engaged in the situation [meaningfulness]. Having a strong SOC is a way of seeing the world in such a way as to facilitate successful coping with stressors of life. Antonovsky’s development of a scale to measure SOC was built on the ideas that SOC is a universal significant term that crosses lines of gender, social class, geographic regions and culture. The elusiveness of how to measure stress has been well documented. Cohen et al, (1983) noted that measures of stress range from the cumulative effect of the number of objective stressful life events to asking respondents to rate the stressfulness or impact of each event. Research utilizing these type tools suggested that the number of stressful events, in and of themselves, precipitate pathology and illness according to Cohen et al. They noted that selfratings of stressfulness were better predictors of health-related outcomes than counting stressful events. At a time when there were limited measures of stress to assess both global and eventspecific levels of stress, Cohen et al (1983) set out to produce a sound measure of perceived stress that could provide valuable information about the relationship between stress and pathology. Developed within three samples; one of a heterogeneous community group that was part of a smoking cessation program and the other two samples consisting of college students, the Perceived Stress Scale measures the degree to which situations in a person's life are appraised as stressful. Delgado (2007) linked Antonovsky’s (1993) construct – sense of coherence -- to Cohen et al.’s (1983) measure of stress. In a study of 181 people with COPD (chronic obstructive pulmonary disease) Delgado found that participants with the strongest SOC perceived less stress. Compatible with Antonovsky's SOC, Cohen et al.’s measure of stress decreases as ones SOC increases. However, this study of predominately (91%) White males (54%), over age 60 (62%) shreds little light on stress among Black women of childbearing age. Despite the lack of a standardized measure of stress, recent anecdotal literature by Maglione-Garves, Kravitz, and Schneider (2005) also points to the detrimental effects of stress on health outcomes. These authors surmise that too much stress over time in conjunction with poor coping habits leads to disease and even death if left unchecked. Popular literature found in self-help type journals added to the conjecture that stress contributes to poor health outcome in spite of the need for empirical evidence. Lloyd, Smith, and Weinger, (2005) reviewed the literature on stress and diabetes. Their article highlighted the point that researchers have considered 3 different perspectives of stress. First, the physiological response to an external stimulus, second the psychological response to external stimuli, and third stressful events that maybe seen as negative, positive or both. Given the varied measures of stress, Lloyd, Smith, and Weinger (2005) recognize that the impact of stressful experiences on diabetes vary and may depend on other psychosocial factors. For example, depending on how stress was measured, researchers did not find a link

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between stress and the onset of type 1 diabetes in youth age 15-34. Moreover, if the researchers measured stress as a psychological response to external stimuli, they found that buffers such as coping mechanisms and support group education sessions changed the impact of stressful experiences on diabetes. Similar to Antonovsky’s (1993) idea about sense of coherence, Lloyd Smith and Weinger (2005) see the relationship between stress and diabetes as differing greatly among individuals mainly due to their ability to manage the stressor. Mechanisms through which stress influences diabetes may route through physiological effects on the neuro-endocrine system or through health promotion behaviors in the times of stress. Research is still unclear about the relationship between stress and health outcomes. Therefore, interventions that reduce stress to improve health outcomes may or may not have a positive impact. Today there are a plethora of instruments available to measure stress, however there is still no single measure that incorporates what Hobel, Goldstein, and Barrett, (2008) believe to include all of the crucial elements needed to screen for stress. Similar to critiques by Lloyd, Smith and Weinger (2005), Hobel, Goldstein and Barrett speculate that the neuro-endocrine systems’ response to acute stress allows for adaptation. However, when stress is chronic or excessive, these adaptive mechanisms may not work, and stress may even cause disease. With better psychometric tools and more biomarkers of stress, these authors suggest better understanding of how psychosocial stressors may impact health outcomes.

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BLACK WOMEN AND STRESS Seen as being strong and the backbone of many Black families, Black women are often times champions of tradition. In fact, according to Patterson (1998), Black women are generally more conservative than White women and have a stronger image of a woman’s role involving reproduction and childrearing. This suggests that for Black women, childrearing is a primary role of womanhood. Today many young Black women may disagree with Patterson’s research findings; however, U.S. census data suggests that there are fewer Black children being raised within homes where moms and dads are present. Marian Wright Edelman wrote about the spiraling percentage of Black female-headed households in 1997. She encouraged society not to look for quick fix solutions to complex family dynamics, and moreover she suggests that we should not blame the victim. Edelman contributes the crux of the problem to the fact that Black women are less likely to raise their children in marriage. Pointing to literature from the 1950’s, Edelman rails against suggestions that femaleheaded or matriarchal Black families are inferior. Labeling these families as non-functional and disorganized is wrong according to Edelman. However, the stress of managing work, parenting, and the home may put Black women at increase risk of stress related disorders due to their matriarchal type lifestyle. Specializing in ways to persist and persevere, Neal-Barnett, (2003) explains that Strong Black Women know how to make a way out of no way. Described as the most resilient members of the human race, Neal-Barnett highlights the work of Toni Morrison and Maya Angelou as illustrations of Black women having the ability to rise against overwhelming odds. But how does this fit with Antonovsky’s (1987) sense of coherence (SOC) theory? It would certainly appear, within Neal-Barnett’s writings, that Black women comprehend their

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stressors; they also seem to muster up resources to manage the demands of their lives. However, it is questionable whether Strong Black Women are ‘engaged in’ or ‘care about’ their stressors. Are Strong Black Women too blessed to be stressed? Perhaps the strong Black woman is not truly engaged in the stressor. This calls into question whether Strong Black Women have a strong SOC. As Antonovsky’s SOC theory suggests, a poor SOC may be part of the reason why Black women are more likely to have poorer health outcomes than their White counterparts. A closer look at Neal-Barnett’s (2003) work reveals that the biggest drawback of being one of the Strong Black Women is that they don’t stop even when they know they should stop. Could this be a sign that they are disengaged? For the strong Black woman, admitting that she is stressed-out is a sign of weakness. Rather than being seen in a negative sense as weak, Neal-Barnett describes the notion that a strong Black woman will not admit she is stressed, she keeps her feelings and emotions locked inside, and, to make matters worse, she continues to help everyone else. This strategy places the strong Black woman as a top candidate for sickness and dis-ease. Based on the studies done by Neal-Barnett, she suggests that health problems such as chronic upper respiratory infections, hypertension, heart disease, and obesity are related to the strong Black woman’s lack of acknowledging her stressors. Relative to Antonovsky’s SOC theory, Neal-Barnett’s description of a strong Black woman’s behavior symbolizes a lack of meaningfulness for stressors in her life. Contemporary Black women authors also suggest that stress is apt to always be a part of daily living for Black women. Toni Morrison (1970), Terri McMillan (1996), and Maya Angelou (1978) have depicted stress among the lives of African American women through their vivid stories and poems. They have colorfully illustrated the massive amount of stress that Black women have dealt with throughout history. Whether it was during ancient times in Africa or in present day progressive America, stress for Black women continues to present itself in many forms. Both social and physical, it is evident that these stressors can originate from several different sources. A source of stress for Black women that can be felt at any stage of life may be due to race. Toni Morrison explores this thoroughly in most of her novels. Her characters are placed in different time periods during American history, and mostly all of them experienced some sort of racial prejudice. For example, in Toni Morrison’s (1981) Tar Baby, she explores the power struggle between Blacks and Whites. In addition, she explores the complexities of race relations and social status among Blacks. Maya Angelou’s poetry has eloquently exhibited stories of survival and triumph for women of African descent. In her poem “Our Grandmothers”, she illustrates the resilience of Black women with the line “You have tried to destroy me, and though I perish daily, I shall not be moved”. Angelou’s well known “And Still I Rise” has become an anthem for African Americans, particularly women who had to deal with racial prejudice and male superiority. Her poem helps to give encouragement to African American women who deal with the harsh effects of being Black and female. “Out of the huts of history's shame I rise Up from a past that's rooted in pain I rise

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I'm a black ocean, leaping and wide, Welling and swelling I bear in the tide. Leaving behind nights of terror and fear I rise Into a daybreak that's wondrously clear I rise

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Bringing the gifts that my ancestors gave, I am the dream and the hope of the slave. I rise”

Another form of stress that has plagued African American women is familial stress. African American women have had to be the caregivers to their families for years. Mentioned as a reason for not focusing in on their own health care needs, Dr. Suzanne Smeltzer, author of a chapter in this book, highlights the perspective that many African American women’s central identity is caregiver. This means that they are often socialized to put the needs and demands of others before their own. Although the word stress was never mentioned to label the lived experience, in her book “In the Spirit”, Susan L. Taylor (1993) opens with a clear picture of demands that exceed resources. The introduction of the book depicts a much stressed Black woman, so stressed that she ends up in the emergency room (ER) with symptoms of a heart attack. Short of breath and heaviness in her chest, the woman phones her baby’s father and asks him to take her to the ER. Susan describes the woman’s thoughts about her monthly salary that did not meet the demands of food, clothing, shelter, transportation, and holiday gifts. Moreover, the character’s cosmetics business was in jeopardy as she had no safe mechanism to reclaim her inventory from her soon to be ex-husband. To add insult to injury, she had no insurance. Fortunately, she learns from the doctor that she was not having a heart attack and just needed to relax. However, her only thought was “how could I relax”. The book is designed to help Black women balance the demands of work, friends and family while problem solving to improve their emotional and spiritual health. Whether depicted in writings by authors like bell hooks (2007) or in stories by Terry McMillan (1996) that are filled with drama that highlights the stressful nature of many Black women’s lives, the effects of stress are far reaching. Much of what is understood about the African American community will not be found in the New England Journal of Medicine. In fact, if researchers, clinicians and scholars are interested in understanding the lived experience of Black women, they are best advised to read popular fiction literature. For example, in her fiction, Nobel Prize winner Tony Morrison powerfully evokes the legacies of discrimination and injustice that have been bequeathed to the African-American community. Research findings that explain how stress within the personal lives of women prevent them from negotiating barriers to treatment, and how chronic stress has been attributed to harmful physiological events (Maglione-Garves, Kravitz, and Schneider, 2005) are helpful. But, effective interventions to stem the tides of poor outcomes related to stress are rare. In search of mediators of stress for Black women, religiousity has surfaced as a concept of interest. Reporting on a study of 224 low-income urban sixth- through eighth-grade African American teens Grant, et al.’s (2000) study found that religious involvement was a more effective method of coping with stress for the females than the males. The population

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was targeted because chronic poverty is associated with an array of stressful experiences. These stressful experiences range from major life events such as child abuse and divorce, to chronic interpersonal stressors such as inter-parental conflict, to the daily hassles of trying to make ends meet. This study examined potential factors that mediate stress among poor Black teens living in an urban area. Seen as relevant to the development of a stress prevention intervention that is culturally appropriate and ecologically valid for low-income urban African American youth, religious involvement was included as a variable in Grant, et al.’s (2000) study. Religious involvement plays a prominent role in the lives of many African American individuals and appears to serve critical mental health functions, including social support, a sense of community, and the development of spirituality. Moreover, church provides services such as education, mentoring, and recreation for many African Americans. Grant, et al.’s (2000) suggests that a person’s level of involvement in a religious institution will benefit him or her. Specifically, the degree to which he or she is socially connected to other participants, and the degree to which they share common beliefs and experiences with other participants, will mediate stress. Dr. Gloria Boseman also points out the importance of religion in a Black woman’s life in her chapter of this book while exploring mechanisms to cope with stress.

STRESS AND PREGNANT BLACK WOMEN

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Researchers have called for more of a focus on identifying the role of stress within Black women’s lives and the effect on their health (Rowley, Hogue, Blackmore. et al., 1993). In 2003, Gennaro and Hennessy’ review of the literature, reported numerous measures and definitions of stress. Their review plus others include: (1) Negative life events (Mutale, Creed, Maresh, and Hunt, 1991; Whitehead, Hill, Brogan, and Blackmore-Prince, 2002; Zuckerman, Amaro, Bauchner, and Cabral, 1989). (2) Daily hassles (DaCosta, Brender, and Larouche, 1998; Hobel, Dunkel-Schetter, Roesch, Castro, and Arora, 1999; Wadhwa, Sandman, Porto, Dunkel- Schetter, and Garite, 1993). (3) Psychological distress (often measured by anxiety or depression) (Hobel et al., 1999; Rini, Dunkel-Schetter, Sandman, and Wadhwa, 1999; Wadhwa et al., 1993). (4) Perceived stress (Lobel, Dunkel-Schetter, and Scrimshaw, 1992; Sandman, Wadhwa, Chicz-DeMet, Dunkel-Schetter, and Porto,1997; Sable and Wilkinson, 2000; Wadhwa, Culhane, Rauh, Barve, Hogan, Sandman, Hobel, Chicz-DeMet, DunkelSchetter, Garite, and Glynn, 2001; Glynn, Wadhwa, Dunkel-Schetter, Chicz-Demet and Sandman, 2001). This illusive concept has been the subject of many studies specific to pregnancy, birth outcomes, and Black women. In fact, conceptual and empirical definitions vary among authors. Moreover, intervening variables such as social support and coping may blur the effects of stress. The timing of when stress is measured is also a factor generating

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controversy. Nevertheless, the topic of stress among pregnant Black women remains a worthy challenge as much of Black infant mortality is contributed to preterm birth. There are a number of studies with large samples [more than 500 participants], that have documented the relationship between stress and preterm birth (Copper et al., 1996, Hobel et al., 1999; Sable and Wilkinson, 2000; Whitehead et al., 2002). In a study of 2,593 gravid women assessed at 25 to 29 weeks, stress was significantly associated with spontaneous preterm birth with an odds ratios of 1.16, p = 0.003, and with low birth weight an odds ratios of 1.08, p = 0.02 (Copper et al., 1996). Moreover, race was still a significant risk factor after controlling for psychosocial status, substance use, and demographic traits. The authors concluded that stress, as measured by an abbreviated scale for the Assessment of Psychosocial Status in Pregnancy, was related to spontaneous preterm birth and low birth weight even after controlling for maternal behavioral and demographic characteristics. The abbreviated scale was adapted from five previously validated tools that measure trait anxiety, self-esteem, mastery, depression, and stress. Hedegaard et al., (1996) studied the relation between stressful life events experienced during pregnancy, and the risk of preterm delivery and shortened duration of pregnancy. Their prospective study included questionnaires that measured exposure to stressful life events during pregnancy. Between August 1989 and September 1991, 5,873 Danish pregnant women completed the questionnaires. Life events perceived as highly stressful by the participants were associated with shorter mean duration of gestation and increased risk of preterm delivery. This association was noted primarily among those with events that were experienced between the 16 and 30 weeks of gestation. Women with more highly stressful life events had 1.76 times great risk of preterm delivery than those without perceived stress (95% confidence interval = 1.15-2.71). These authors did not find evidence for a buffering effect from social support. From a review of the literature on stress, racism, pregnancy, and birth outcomes among African Americans, Giscombe´ and Lobel (2005) concluded that disparities in birth outcomes exist at all levels of SES when comparing Black and White women. This held true even after controlling for health behaviors such as tobacco and alcohol use. Even more disruptive is their conclusion that birth outcome disparities increase with higher levels of education. Racism was said to be a form of stress that deserves more attention as it may have unfavorable effects on a Black woman’s health. Developing a cumulative burden or increased allostatic load, the impact of racism on the life of a Black woman may produce what is referred to as a weathering effect (Giscombe´ and Lobel, 2005). Pointing to results from the National Health Interview Survey and the National Death Index, Giscombe´ and Lobel, (2005) note that U.S. born Blacks have higher odds of death than non-U.S. born Blacks. Their observation was similar to findings from David and Collins (1997) study comparing birth weights among infants of African-born, U.S.-born White, and U.S.-born Black women. African-born women delivering here in America had infants with birth weights more closely related to those of US-born White women than to U.S.-born Black women. The similarity between U.S.-born White women and African-born Black women persisted even when comparing women considered as low risk such as those who were between age 20-39, with at least 12 years of education, who had early prenatal care, that did not have more than a third pregnancy, and those with no previous fetal losses. David and Collins (1997) results question the genetic concept of race as it relates to infant birth weights and the Black/White disparity. If it were genetic than all Blacks

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regardless of their country of origin should have similar birth weights and infant mortality outcomes. Therefore, the authors suggest that we need to look beyond genetics to explain the gap in Black/White infant birth weights. David and Collins suggest that perhaps, a Black woman’s exposure to stress in the form of racism and discrimination may explain their poor birth outcomes. There are numerous issues regarding the perception of racism. Giscombe´ and Lobel, (2005) intimate that Blacks don’t always acknowledge racism for fear of repercussion or being seen as a whiner. They also offered another postulate that racism may be seen as a routine part of life, and based on stress theory, subjective appraisal of an event may allow some Blacks to minimize stressful events. Similar to issue of psychometric soundness among scale to measure stress, instruments to measure racism have also been called into question. In fact, findings have been conflicting regarding the relationship between perceived racism among pregnant Black women and the birth weight of her infant.

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The Reduce Stress Program Based on the research findings, a community-based program was developed to reduce stress among pregnant Black women living in the northern region of New Jersey. The program was marketed via bus advertisements and contacts with private obstetrician’s offices as well as within obstetrical clinics. An explanation of the program and its benefits were discussed with the clients that expressed an interest in the program. Emphasis was placed on the benefits in terms of fetal well-being, the potential of stress affecting preterm delivery, and the general well-being of mom as she utilizes the techniques to cope with stress in her life. An intake process assessed whether the client was appropriate for the program based on recruitment criteria over the phone. Those that agreed to participate in the program were asked to complete the Perceived Stress Scale and the Perceptions of Racism Scale. The client was then assigned to an interventionist who was a Social Worker [MSW] or Registered Nurse [RN] that conducted interventions at approximately 15, 20 and 25 weeks gestation. First Visit -- The interventions were held in a location that was convenient for the client. During the first visit with the client, the interventionist asked the client to sign a Board approved consent form and then engaged the client in a conversation to develop a rapport before completing additional questionnaires and the intervention itself. The intervention began with a review of the items listed below from the Stress Management: Self-Care Handbook: • •



Help the client to define stress by reviewing pages 3 to 5 in the workbook Help the client to develop an interest in her own profile, i.e. physical, emotional behavioral “warning signs” of stress. Instruct and encourage the client to complete pages 6 and 7 of the workbook on her own. Help the client to identify sources of stress in her life. Instruct and encourage the client to complete on her own, the causes of stress for her on pages 8 to 9.

Next the Interventionist introduced the concept of journal writing as a proven stress reduction technique. Pages 10 and 11 of the workbook provide a place for the client to utilize journaling as a stress reduction technique. The client was also encouraged to talk about her

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eating, sleeping, exercise habits as well as the relationship with the baby’s father, family support system, work/school situations, general life style and what impacts a healthy pregnancy. The workbook afforded the client an opportunity to gain a better understanding of stress and explore issues in the client’s life. The Interventionists were trained specifically for the program, and instructed the client that they did not provide counseling or a therapy session. Based on issues presented by the client, appropriate referrals were made and health questions were referred back to the client’s provider. In addition to the workbook on stress, the concept of guided imagery was introduced. During the first intervention the client was instructed of how guided imagery can reduce stress and benefit the baby.

Guided Imagery Exercise •

The interventionist showed the client how to use the guided imagery compact disk (CD). It was kept simple so the client could practice it weekly. Part of the instructions included identifying a mental time and place where she enjoyed and felt happy while listening to the CD. The interventionist reported that the women smiled as they picked a mental place and time when they had a good and happy feeling, and they were able to describe it in detail during the exercise. The women were also instructed that the techniques should not be used while driving or using equipment at work.

Deep Breathing Techniques •



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The interventionist then explained, in laymen’s terms, the benefits of “oxygenating the blood” and how deep breathing exercises relax the body. They emphasized again that when the mom’s body relaxes, the baby benefits. The interventionist practiced several deep breathing exercises with the client. She then mentioned that this technique can be done anytime, at home, at work, whenever mom needs a few minutes away from the stressful situation. The clients were also told that frequent and consistent practice of deep breathing techniques help to cope and reduce effects of stress on the body.

During the first session the client was also asked to complete the Impact of Events Scale. It was clarified for the client that she needs to note an event that was stressful in her life and reply to each point as it relates to how that specific event came to her mind within the past seven days. The first intervention ended with a review of all the stress reducing techniques taught including the Workbook, Journaling, the Guided Imagery CD, and the Deep Breathing exercises. The interventionist emphasized that practice and consistency helps the mom relax and benefits the baby. An evaluation form is completed by Interventionist, signaling how well the session was completed and whether referrals were needed to help the client with items beyond the project’s scope.

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The Interventionist scheduled the next two sessions at least four weeks apart and called the day before each intervention to confirm the appointment for the second and third interventions. Second Visit -- During the second intervention the moms were presented with a Music Box and a book about meditations during pregnancy. This was followed by conversations about sleep, and waking at night to go to the bathroom. The moms were asked to share their experiences with the workbook, journaling, the guided imagery CD and the deep breathing exercises. The Music Box was offered as a technique to assist mom in falling asleep and the meditations book was highlighted as a way to focus on the mind and body. Aside from a review of the items listed below, the moms were informed of the ‘Kick Count’ exercise and the interventionist answered questions about fetal movement counting: • • •

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Review of the stress reduction techniques from the first session Return demonstration of the techniques to be sure she is practicing them correctly Elicit verbal understanding of personal stress indicators and assist her in evaluating her response to stress, (based on Workbook pages 14, 15, 16, 17). Inquiry about her self-care: nutrition, exercise, and rest.

The client was also given an opportunity to express any concerns about her health that should be addressed with her doctor. The interventionist also explored issues of childcare, childbirth or lactation classes and changes in relationships and family support. As these items were discussed, the interventionist helped the mom make the connection that these types of issues may be stress provoking, and that the techniques for stress reduction will help her to cope and manage the stress associated with her pregnancy and life situation. The session ended with the Interventionist completing the second intervention evaluation form, noting important issues followed up during this intervention and any new issues needing to be recorded in client’s file. Third Visit -- The third and final intervention took place approximately four weeks following the second intervention. The same items mentioned in the second session were repeated. As a wrap-up, the mom was given a Baby Basket, as well as a Thank You letter from the Program Director. The “Kick Count” was reviewed again and the interventionists reported that there was a strong tendency for the moms to want to share their experience about the baby’s movements. The Perceived Stress Scale was completed again by the client and they were given a self-addressed stamped envelope to share the birth outcome information with the Program. The moms were instructed to place the birth outcome form on the refrigerator door as a reminder to complete the form and send it to the office within 3 weeks of the birth of their child.

Questionnaires Perceived Stress Scale (PSS) -- The 14-item Perceived Stress Scale was used to measure chronic stress. This was the degree to which experiences in the last month were seen as stressful (Cohen et al., 1983). Stressful experiences were seen as unpredictable, uncontrollable, and burdensome. For example the statement read: “In the last month, how often have you felt confident about your ability to handle your personal problems?”, and “In

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the last month, how often have you felt that you were unable to control the important things in your life?” Participants rated each statement on a scale ranging from 1= never to 5= very often. After reverse scoring of negatively worded statements, the ratings were summed with a possible range of 0 to 56, the higher the score, the greater the perceived stress. A Cronbach’s alpha reliability coefficient of α=.75 was obtained from participants in this project. Perception of Racism Scale (PRS) -- Racism was conceptualized as a form of stress and was measured by the Perception of Racism Scale (Green, 1995). This 20-item self-report questionnaire measured the participants’ life experiences in employment, school, and public settings. Participants responded on a 4-point scale ranging from strongly agree to strongly disagree. The statements focused in on three different dimensions: (a) feelings of racism, (b) racist actions, and (c) racist thoughts. Reverse scoring of the negative statements produced scores ranging from 20 to 80; the higher the score, the greater the perception of racism. The Cronbach alpha internal consistency reliability coefficient was α=.90 for the participants in this program. Revised Impact of Events Scale (RIES) -- Although it is not clear that life events are the best measure of stress during pregnancy, Lobel (1994) and Hedegaard et al. (1996) lend support for the notion that it is not appropriate to assume that events are stressful. Therefore, they suggest asking women what they experience as stressful or perceive as negative during pregnancy. Based on their recommendation, the Revised Impact of Events Scale was used to measure acute stress. The RIES is a 15-item self-report measure of impact experienced as a result of a specific stressful event that occurred within the past 7 days (Horowitz et al., 1979). Negatively worded items were scored as 0, and positively endorsed items were scored as 1, 3, or 5 depending on the degree of stress associated with the particular life event. Possible scores range from 0 to 75 with higher scores indicating more stress. The reliability coefficient was α=.71 for the participant of this program.

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Project Outcomes Five hundred and three [503] pregnant women enrolled in the program which was open to enrollment from 9/12/00 to 6/26/06. On average, the moms were approximately 27 years old (M=26.7, SD=5.6), with a mean education level of 12.7 years (SD=2.7). Participants’ annual family income ranged from $0 to $260,000 per year. Ten percent of the participants reported family incomes of more than $65,000 and 20% claimed no income. The average family size was approximately 3 members (M=3.27, SD=2.2). Sixty-six percent of the women were employed and 75% reported having health insurance. Twentyseven percent of the women denied being in a committed relationship and 75% reported that on a scale of 1-10, their religiosity score was zero or one, meaning they were not religious at all. Thirteen percent (68) of the women were born outside of the United States and on average these pregnant women had been living in the U.S. for 8 years (SD=7). However, their years living in the U.S. ranged from less than one year to 27 years. The mode of years for living in the U.S. was one and the median was 7 years. Haiti and Jamaica were reported most often as the mothers’ places of birth for those outside the U.S. Twelve percent of the women reported a history of asthma, 4% diabetes and 8% hypertension. Six percent reported having a prior low birth weight baby. On average, the women were 16.6 (SD=6.5) weeks pregnant at the time they enrolled in the program. On

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average the participants had 3.2 (SD=2.2) total pregnancies and for 25% of the women, this was their first pregnancy. Less than 1% (.3) of the women reported illicit drug use, while less than 2% (1.9%) stated they had a drink during the pregnancy, and 7% reported smoking. A dependent (paired) samples t-test was conducted to evaluate whether the woman’s stress was reduced. The results indicate that the post-intervention Perceived Stress Scale (PSS) score (M=23.4, SD=6.1), t(121)=7.29, p=.000 was significantly less than the preintervention PSS score (M=28.8, SD=7.2). The standardized effect size index d was .63, with considerable overlap in the distribution for the 5-point Likert ratings of stress, as shown in figure 1. The 95% confidence interval for the mean difference between the two ratings was 3.75 to 6.54.

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Figure 1.

Correlation coefficients were computed among 14 of concepts posited to be related to an infant’s birth weight. Using Bonferroni approach to control for Type I errors across the correlations, a p value of less than .05 was required for significance. The results of the analysis presented in Table 1 indicate that none of the measures of stress were related to the 244 available birth weights of the infants. Although none of measures of stress were found to be related to the infant’s birth weight, the correlation coefficients revealed interesting findings about pregnant Black women. As shown in Table 1, participants that reported increased perceived racism also reported increased; age (r=.38. p=.01), education (r=.22, p=.01), income (r=. 35, p=.01), and being married (r=.21, p=.01). Similar to the postulates in Dr. Nsiah-Jefferson’s chapter that suggest college educated Black women have more exposure to racism and sexism, highly educated participants of the community based program also reported increased perceived racism.

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Table 1. Correlations among measures and indicators of infant birth weight 1

3

4

Infant birth wt

1.000

Pre stress

-.014 1.000

Post stress

-.107 .266** 1.000

Racism

-.011 -.069 -.074 .314

Pre saliva

-.229 -.244

Post saliva

.167 .032

.295 -.092

Education

.027

Income

-.039 -.135 -.032 -.151

HTN

.078

.102

Diabetes

.055

-.015

Prior preterm

-.058 .149

*

*

-.013 -.053

.284

**

5

6

7

8

9

10

11

12

1.000

-.106

-.149

.091

1.000

.346*

.189

.251

-.045

1.000

.385

**

.073

.139

-.183

1.000

.099

.221

**

.006

.032

.105

.354** 1.000

.044

.351** -.042

.197

-.045

.459** .512** 1.000

.009

.207

-.174

.357** .268** .394** 1.000

*

**

.082

.215

.055

.117

.079

.070

.107

.070

.038

-.013

-.119

n>5

.045

.060 .238

**

-.058

13

14

15

1.000 .019

.167

-.093

Relationship

Total Preg.

.194*

**

Event

Moms age

**

2

.091 .025

.116 .073

.044 .077

-.160 -.416

*

.297

**

.160

*

.062

.150*

.045

1.000

.047

.117

-.005

.278** 1.000

-.029

.069

.030

.189** .120

1.000

.082

.264** 1.000

-.007

Correlation is significant at the 0.01 level (2-tailed). *. Correlation is significant at the 0.05 level (2-tailed).

.026

.180

**

.019

202

Yvonne Wesley From a qualitative perspective, below is a list of selected comments from the women: “I am truly grateful for the time spent, and the stress management sessions given. It helped me greatly through time that I knew I could not get through.” “This program really helped me to keep my stress levels low. Now that I have completed the program, I feel great!” “The best part of the program is its existence. Knowing that the stress that I experienced was not imagined and having someone to talk to made a world of difference to me. Thank you.” “The “I” statements helped me and my boyfriend to keep from putting the blame on one another.” “I feel the program helped me out a lot, and if it can help me and all my problems, it can help anybody.” “The program was extremely helpful with expressing my issues and complications that I had throughout my pregnancy.” “Without this program I may not have had a healthy pregnancy. I just want to thank all the consultants for reducing my stress.” “I feel the program was very helpful. I also feel that more females should get into the program so stress won’t take over them or their babies. Thank you.”

These were also a few of the written comments received on program evaluations. Over 90% of the evaluations demonstrated that the participants felt the program was highly supportive of them during their pregnancies. In addition, many participants either called back or brought the baby to meet the interventionist.

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SUMMARY The program was able to significantly reduce perceived stress for the pregnant Black women. However, none of the measures of stress were related to the infant’s birth weight. It was also interesting to note that on a scale of 0 to 56, the women’s mean stress scores were not high. The moderate stress scores may be related to their sense of coherence, as the women’s comments suggest that they face increased demands related to household responsibilities. Perhaps a multidimensional look at stress and the lives of Black women will divulge more insights regarding the mechanisms through which stress influences birth outcome. It is posited that stress causes the release of placenta-derived corticotropin releasing hormone (CRH) which decreases the release of adrenocorticotropic hormone (ACTH) which in turn produces increased cortisol that then increases CRH that enhances prostanglandins and ultimately promotes labor in pregnant women (Lockwood and Kuczynski, 1999). However, the route through which stress affects the neuroendocrine system during pregnancy is unclear (Wadhwa, Dunkel-Schetter, Chicz-DeMet, Porto and Sandman, 1996). In fact, according to Lloyd, Smith, and Weinger, (2005) the physiological or psychological responses to an external stimulus or stressful event may be seen as negative, positive or both. Beyond the patho-physiological explanations of preterm birth among Black women and stress, Amen and Taha’s chapter in this book, considers the belief and value systems of African American women which may determine what they perceive, how they evaluate it, and

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how they respond. Today, many nursing scholars and researchers are turning to critical social theory to gain a deeper understanding of the complexities associated with the state of human conditions within society. The effects of marginalization on African American women’s belief systems are fertile ground for exploration. Maya Angelou, Toni Morrison, and Terri McMillan, have all depicted the stressful lifestyles of African American women. However, there is a paucity of empirical literature that guides health care provider interactions with Black women. Finally, data from the community-based program described in this chapter highlights the needs for interventions among Black women from all socio-economic backgrounds. Stress and the health of Black women continues to be a topic of concern as stress increases susceptibility to many infectious diseases and chronic conditions according to Harville, Savitz, Dole, Thorp, and Herring (2007).

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Mercer, B. Ahokas, R., Beazley, D., Klesges, L., Meyer, N., Carr, T. (2002). Cortisol, acth, and pyschosocial stress in women at high risk for preterm birth. American Journal of Obstetrics and Gynecology, 187(6, part 2) Supplement:S72. Morrison, T. (1970). The Bluest Eye. New York: Holt, Rinehart and Winston. Morrison, T., (1981). Tar Baby. New York: Knopf. Mutale, T., Creed, F., Maresh, M., and Hunt, L. (1991). Life events and low birthweightanalysis by infants preterm and small for gestational age. British Journal of Obstetrics and Gynaecology, 98, 166-172. Mullings L. Wali A. McLean D. Mitchell J. Prince S. Thomas D. Tovar P. (2001). Maternal and Child Health Journal, 5(2), 85-93. Neal-Barnett, A, (2003). Soothe your nerves: The Black woman's guide to understanding and overcoming anxiety, panic, and fear. New York: Simon and Schuster. Patterson, O. (1998). Rituals of Blood: Consequences of Slavery in Two American Centuries. New York: Basic Civitas a member of the Perseus Books Group. Rowley, D.L., Hogue, C.J.R., Blackmore, C.A. et al. (1993) Preterm delivery among AfricanAmerican women: a research strategy. American Journal of Preventive Medicine 9, 1-6. Rini, C., Dunkel-Schetter, C., Sandman, C., and Wadhwa, P. (1999). Psychological adaptation and birth outcomes: The role of personal resources, stress and sociocultural context in pregnancy. Health Psychology, 18, 333-345. Ruiz, R.J.; Fullerton, J., Brown, C.E.L., and Dudley, D.J. (2002). Predicting risk of preterm birth: The roles of stress, clinical risk factors, and corticotropin-releasing hormone. Biological Research for Nursing, 4(1), 54-64. Sable, M., and Wilkinson, D. (2000). Impact of perceived stress, major life events and pregnancy attitudes on low birth weight. Family Planning Perspectives, 32, 288-294. Sandman, C.A., Wadhwa, P.A., Chicz-DeMet, A., Dunkel-Schetter, C., and Porto, M. (1997). Maternal stress, HPA activity, and fetal/infant outcome. Annals of the New York Academy of Sciences, 814(1), 266-275. Selye, H. (1936). A syndrome produced by diverse nocuous agents. Nature 138, 32. Reprinted in The Journal of Neuropsychiatry and Clinical Neurosciences, pp 230-231, Hans Selye and the Field of Stress Research by Thomas c. Neylan, (1998), 10(2). Selye H. (1956). The Stress of Life. New York: McGraw Hill. Taylor, S.L. (1993). In the spirit: The inspirational writings of Susan L. Taylor, New York: Amistad Press. Wadhwa, P. D., Sandman, C. A., Porto, M., Dunkel-Schetter, C., and Garite, T. J. (1993). The association between prenatal stress, infant birth weight and gestational age at birth: A prospective investigation. American Journal of Obstetrics and Gynecology, 169, 858865. Wadhwa, P.D., Dunkel-Schetter, C., Chicz-DeMet, A., Porto, M., and Sandman, C.A. (1996). Prenatal psychosocial factors and the neuroendocrine axis in human pregnancy. Psychosomatic Medicine, 58, 432-446. Wadhwa, P.D., Culhane, J.F., Rauh V., Barve S.S., Hogan V., Sandman, C.A., Hobel, C.J., Chicz-DeMet, A., Dunkel-Schetter C., Garite, T.J., and Glynn, L. (2001). Stress, infection and preterm birth: a biobehavioural perspective. Paediatric and Perinatal Epidemiology, 15(Suppl. 2):17-29.

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Whitehead, N., Hill, H., Brogan, D., and Blackmore-Prince, C. (2002). Exploration of threshold analysis in the relation between stressful life events and preterm delivery. American Journal of Epidemiology, 155, 177-124. Zuckerman, B., Amaro, H., Bauchner, H., and Cabral, H. (1989). Depressive symptoms during pregnancy: Relationship to poor health behaviors. American Journal of Obstetrics and Gynecology, 160, 1107-1011.

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Chapter 9

OLDER ADULTS: QUALITY OF LIFE ISSUES DERIVED FROM LATE ONSET BLINDNESS Estelle A. Pisani

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ABSTRACT Blindness complicates life. Self-reliance is challenged. Functional difficulties and emotional distress emerge. After being sighted for most of life and becoming blind later in life, individuals frequently experience ongoing sorrow related to changes they confront in a life that is now without vision. Driving this chapter are findings excerpted from a qualitative research study I conducted that analyzed a seventy minute audio-taped conversation among nine older adult visually impaired friends while they talked about their blindness and its impact on their quality of life and their health. Six of the nine participants were African-American and Caribbean-American, three of whom were women. Discourse analysis, a qualitative methodological approach, examined the intersection of their discussion and social concepts and resulted in an increased sensitivity to the human experience of blindness. Findings indicated that late onset blindness profoundly impacted the person’s total sense of health and well being. Even sexual adequacy was identified as being influenced by blindness. Chronic sorrow was evidenced by ongoing grieving of their losses along with reminiscence about their lives when sighted. Healthcare providers will gain knowledge from this chapter that will enhance the understanding of visually impaired older adults.

INTRODUCTION “I was thinking about when I first lost my vision. It affected me quite a bit because I didn’t feel confident anymore and I think that also dealt even in the realm of my sexuality. I didn’t feel like a whole person anymore…just within the relationship of my, my you know my marriage… And it just made me feel very, very inadequate. And so I had to overcome that over a period of time. And, you know, I’m still not quite there I don’t think, but I feel a lot

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Estelle A. Pisani better about myself than I used to.” (Quoted from Betrice, (pseudonym) a 67 year old AfricanAmerican women diagnosed with macular degeneration approximately ten years earlier.)

Throughout this chapter you, the reader, have an invitation to “listen in” on excerpts from a conversation among nine visually impaired older adult friends, three males and six females. They had set out to talk about the topic of sexuality but instead spent most of the time talking about the influence that their blindness has had on the quality of their lives. As will become evident, chronic sorrow has figured prominently in their lives. Much of the focus will be on the discourse of two African-American and one Trinidadian-American female friends. Ruby, Betrice, and Syndy (pseudonyms) are decidedly sensitive to the woes of the others and their words impart genuine friendship, altruism, caring, and consideration. With sincerity, honesty, and humor they share how the pervasiveness of their blindness has impacted their total being. They endeavor to connect with other members and attempt to find meaning and purpose in blindness for themselves as they assist their friends in finding it as well. These ladies embody the human spirit and their discourse drives the conversation steering it towards overall healing and acceptance of blindness. The conversation, thus, becomes uplifting and restorative for all involved. Findings reported in this chapter emerged from two sources: a) doctoral research involving a seventy minute audio-taped conversation among nine friends as well as b) information these and other blind friends shared during conversations with the author during weekly health education visits over a period of 28 weeks. For the purpose of this chapter the term “blind” and not “visually impaired” will be used because “blind” is the usual way the participants described themselves. Physical and emotional aspects of eye diseases will be presented early in the chapter. Excerpts from the audio-taped conversation will then follow to illuminate quality of life issues and allow the reader to reflect upon the pervasiveness of blindness. The intrinsic value of the support received from friends while talking with each other and their absolute need to “laugh and grieve together” will be emphasized. Implications for health care providers will close the chapter.

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In the Beginning… Through a Columbia University Doctoral Clinical Practicum, I had been given the opportunity to provide weekly health education sessions to a natural grouping of visually impaired older adult friends, ages 60 to 83, who lived in their own communities and were not diagnosed with cognitive impairment. Classified as legally blind, most members had developed late onset diseases of the eye including macular degeneration, retinal vasculitis, retinitis pigmentosa, glaucoma, detached retina, and diabetic retinopathy. During the 28 week time period, the group gathering was made up of a total of seven men and sixteen women, although not everyone attended every meeting. Some participants were married to and living with sighted loved ones. Other participants were single or widowed and lived alone. Approximately two-thirds of the participants were African Americans and Caribbean Americans and the others were European-Americans. All spoke English. These blind men and women were each other’s support system providing regular telephone support to one another and socializing together at senior events.

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During the meetings the friends had gotten to know me and I, them. In the evaluation process at the end of the clinical practicum, the group had identified our discussions as valuable and satisfying. I met with them intermittently thereafter and during one of our meetings the friends enthusiastically volunteered to participate in my research study, an audio-taped conversation among friends. On the night of the conversation, nine members participated.

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The Participants… Pseudonyms have been used to enhance participant confidentiality. Justin was a seventy-six year old African-American man whose blindness was due to agerelated macular degeneration. One of the original members of the group from its inception twenty years previously, he was married and lives with his wife. Star, a seventy-three year old Caucasian widow has been a member of the group for over ten years but currently lives with friends out of the county. Since regulation does not allow her to be transported to the meetings by county bus, she only attended when she could get a ride to the meetings. Star’s blindness was due to age-related macular degeneration. Betrice was a sixty-seven year old married African-American woman who resided with her husband and had been attending the group for four years. Betrice’s blindness was due to age-related macular degeneration. She was still able to see shadows at the time of the conversations. Syndy was a seventy-seven year old Trinidadian-American woman who had been attending the group for four years. Her husband currently resides in Trinidad, although he once lived in the United States. Syndy’s blindness was due to age-related macular degeneration. Jilian was a seventy-nine year old Caucasian female who had attended the group for over five years. She was divorced and lived alone. Jillian has diabetic retinopathy. James was an eighty-two year old African-American man who began attending the group eight years previously. He was married and lived with his wife. His blindness was due to age-related macular degeneration. Dorothy, a Caucasian woman, was the youngest member of the group, age sixty, and she had been attending the group for over ten years. She lived with her father and sister. She was born blind. Ruby was a sixty-nine year old African-American woman, widowed in 2002. She lived alone and had been attending the group for three years. Ruby’s blindness was due to age-related macular degeneration. Horace was a sixty-eight year old African-American, divorced male who recently joined this group. He lived alone and his blindness was due to age-related macular degeneration.

The Learning Objectives… The identified learning objectives of the conversational study are highlighted below. As the reader will ascertain, many of the learning objectives were not met, whereas the discussion of blindness resonated throughout.

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Estelle A. Pisani 1. To describe the discourse about sexuality that takes place in a social setting among a group of visually impaired older adult friends. 2. To understand how their talk in a conversation defined their relationships and their behavior as friends. 3. To understand how the friends talked about and explained the meaning and the experience of sexuality and its effect on their quality of life. 4. To understand how the friends talked about and experienced the impact, if any, of visual impairment, aging, and society’s sexual myths on sexual relationships and sexual activities. 5. To explain any moral implications as expressed by the participants related to their sexuality. 6. To identify ways in which healthcare providers use information about sexuality and relationships among visually impaired older adult friends to enhance their assessment and treatment.

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Introduction to the Conversation… On the evening of the study, most participants were transported by county buses paid for by the Division for the Blind, the agency that had initiated the weekly gatherings twenty years previous. I began by welcoming every one and thanking them for agreeing to participate. When they felt comfortable, I highlighted the study learning objectives, and the conversation began and continued for seventy minutes. To enhance sound quality and subsequently the quality of the data, I had engaged an audio technician who had attached individual microphones to each participant’s collars. It was my intent not to participate in the conversation after the introduction so as not to interfere with or impede the flow of the conversation among friends. My goal was to listen, observe, and reflect upon the discourse. I made notes about the content and the process including body language. I also kept reflective notes about my thoughts and feelings during the conversation. Afterwards I carefully studied the audio conversation tape and the transcribed dialogue to identify many of the ways that the participants’ talk functioned for them. That evening I prepared field notes describing the overall experience that assisted me as I analyzed the conversation. Prior to initiation of this study, the Western Institutional Review Board, a delegated agency of Columbia University, approved the study. Measures were taken to protect the rights of each participant. Prior to the conversation and in the presence of witnesses, each participant signed a consent form including permission to be audio-taped and to have demographic information collected.

Limitations of the Study… The data was collected from a unique population, late onset blind older adults, 60 to 85 years of age. The results of this study were generalizable only to similar contexts and inferences about similar populations. Comments of the participants were interpreted within the context in which they were said. Visual impairment inevitably played a meaningful role in

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their discussion. The conversation took place in a specific area in New Jersey not necessarily representative of the rest of the country. Since the conversation was audio-taped, knowledge that the tape was running might have influenced behavior and discussion. Nonetheless, it is known that even if participants are on guard, the give and take of the interaction takes over when the audiotape is running over an extended period. Although sensitive matters were discussed in the conversation, the friends participated openly and with enthusiasm. Once a conversation is recorded, it then becomes a new entity, a taped conversation. The recording is fixed in time allowing for exact reproduction, while the very essence of talk “disappears as soon as it is uttered and can be imperfectly reconstructed but not retrieved” (Tannen, 1984; p.35). Although the audio-tapes were transcribed carefully, even the most detailed transcription will not be able to perfectly reconstruct features such as pronunciation, voice quality, tone, pitch, or amplitude. The intent of the study, however, was to hear what this group of older adult blind friends had to say, how they said it, what action their words had, and how their conversational styles defined their relationships. The spontaneity and thought evidenced in the conversation reinforced in my mind that this conversation among friends was naturally appropriate to the occasion. The friends never sought my input. Their conversation flowed rapidly decreasing my anxiety about issues of hesitation related to being observed. Since no visual cues can be received by the blind friends about when to talk, there was a great deal of overlap and simultaneous chatting, some indecipherable at times. This conversation was a private conversation that turned public and some members might have been somewhat reticent to speak. Linguist, Robin Lakoff, believes that audio-taping of conversations moves them from private to public; it is like putting “love letters in print” (1990, p.41). Since the participants in the study knew each other and were friends, meanings contained in their conversation might have been harder to grasp since meaning had been fashioned together over time (Tannen, 1984). However, since they were friends, I was afforded and now you are given the opportunity, as well, to hear patterns of language such as joking and playfulness that would not have occurred among strangers. Since the friends regularly interacted with one another, they had developed a “special language between and among them” that was “called upon and built upon in their future interactions” (Tannen, 1989, p. 71).

Diseases of the Eye… Visual impairment is one of the most common conditions affecting older adults causing major functional disability and diminished quality of life (Schoenborn, Vickerie, and PowellGriner, 2006; E. Reuban, Silbey, Damesyn, Moore, and Greendale, 1999; Rovner and Ganguli, 1998). Visual impairment occurs in 19% of those age 70 and above with the incidence increasing to 34% for those age 85 and above and it permeates every aspect of older adults’ lives (Desai, Pratt, Lentzner, and Robinson, 2001; Weaver, 1999). Since visual impairment becomes more prevalent with increasing age it negatively affects basic activities of daily living including participation in leisure activities (Carter, 1994). A survey (Lee, Smith, and Kington, 1999) of over 9000 men and women between the ages of 51 and 61 concluded that vision loss dramatically interfered with quality of life and put the

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greatest limitations on daily living activities exceeding all medical conditions except stroke. One of the potential dilemmas for visually impaired older adults is the desire to balance the cultural and personal norms of independence and self-reliance with the functional losses associated with the visual impairment and aging (Horrowitz and Reinhardt, 1998). The primary cause of late onset visual impairment is age-related macular degeneration, a chronic, progressive disease of the eye that affects the most sensitive area within the retina related to visual acuity. It causes the loss of central vision (Chan, 1998; Weksler, 1998). By the year 2030, age-related macular degeneration will cause more blindness in the U.S. than glaucoma and diabetic retinopathy combined (Desai, et. al., 2001). There is no current treatment available for slowing, stopping, reversing, or preventing macular degeneration (Delcourt, Diaz, Ponton-Sanchez, and Papoz, 1998). For the group 70 years and older, however, age related macular degeneration was more common in women than in men and in White than in Black older persons (Desai, et. al., 2001). Many older adults, and particularly older women, must find ways to live life with severe visual losses. The wet form of macular degeneration accounts for 10 % of the cases and it causes the most significant vision loss and blindness due to an increase in abnormal vessels that leak blood into the macula resulting in hemorrhages (Houde and Huff, 2003). Dry macular degeneration accounts for 90 % of the cases. The dry type causes degeneration of the retinal pigment cells and a decrease in rods and cones but no hemorrhaging of the retina so there is mild visual impairment (Houde and Huff, 2003). As degeneration increases and becomes more extensive over time, there is a greater chance of age-related macular degeneration becoming exudative. Glaucoma, cataracts, and diabetic retinopathy are the next most common causes of visual impairment in older adults (Houde and Huff, 2003). In glaucoma, ocular nerve damage is the result of increased pressure due to aqueous fluid drainage problems. Glaucoma is twice as common among black elderly as it is among white elderly (Desai, et. al., 2001). Damage can be prevented if eye pressure is controlled through medications, however, once the nerve is damaged, the condition is irreversible (Houde and Huff, 2003). Vision loss related to cataracts is slow with complaints consisting of blurred vision and increased visual glare (Houde and Huff, 2003). As lenses thicken and turn yellow and cloudy due to aging, new lens fibers grow over old lens cells resulting in cataracts (Houde and Huff, 2003). There are two types of diabetic retinopathy. Ischemia of the retina in proliferative diabetic retinopathy causes the proliferation of new blood vessels that can result in retinal detachment or vitreous hemorrhage (Houde and Huff, 2003). In nonproliferative diabetic retinopathy, circulation problems cause cotton wool exudates, intra-retinal hemorrhages and other microvascular problems (Houde and Huff, 2003). Laser therapy has been of benefit in the management of many people with this condition. In the normal process of aging, the lenses of the eyes stiffen and lose water so that their ability to change shape in order to focus is compromised. The lens also yellows and becomes cloudy, causing color vision problems. Older adults can have difficulties distinguishing shades of blues and greens in particular. A decrease in tear production leads to an increase in corneal irritations and conjunctivitis (Andresen, 1998). The pupils decrease in size with age, thereby, decreasing the amount of light that reaches the retina so that it is harder to see in a dimly lighted area and the eyes take longer to adjust to the dark. Diminished peripheral

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vision, depth perception, visual discrimination, and visual acuity deficits can lead to accidents, falls, and subsequent orthopedic injuries (Andresen, 1998).

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Psychosocial Aspects of Blindness… Vision is considered to be the most essential of all the senses in terms of autonomy and independence; it threatens the person’s self-concept and self-image (Flynn, 1988). Quality of life reported by older adults who have vision loss is lower than that reported by older adults having other chronic illnesses (Schoenborn, et al., 2006). Vision loss can increase the person’s susceptibility to withdraw from life and can cause disorientation and interpersonal isolation. Reality can be bleak without sight and the individual can experience significant changes in levels of independence and in the need for greater support. Older adults, in general, struggle to maintain autonomy and independence. The struggle is intensified when coupled with visual impairment. Significant physical limitations force blind older adults to modify their daily activities and change their social roles. In addition to greater dependence upon others, the challenges of the illness can create deterioration of lifestyle, loss of employment, and emotional distress. Individuals seek strategies to bear their losses and to find effective methods to negotiate their social world. Depending on how the individuals perceive themselves, they will interpret situations and take actions. The view of self is a central concept of identity that is formed through interactions with others (Blumer, 1969). Chronic illness affects the way individuals view themselves; they can feel that they have lost themselves in this illness. These changes can impact the way the individual interacts with others (Charmatz, 1983). Health conditions force individuals to change the focus of their lives. The individual might need to rebuild oneself psychologically (Janoff-Bulman, 1989). When confronted with illness or disability on a long-term basis, individuals can develop creative ways to integrate such disorders into their everyday lives to maintain a sense of normalcy. In a study of women living with chronic illnesses including blindness a primary strategy used by them was isolating themselves on bad days (Schaeffer, 1995). However, the women made every effort to look their best so that others would see them as normal people (Weaver, 1999; Schaeffer, 1995; Robinson, 1993). Other creative strategies were described by women included listening to their bodies, keeping positive attitudes, asking others for assistance, pretending to be all right in front of others, humor, helping others, and praying (Shaul,1997). Asking others for help, although useful, was one of the most difficult strategies to employ. Seeking social support to enhance emotional adjustment can be instrumental (Carver, Scheier, and Weintraub, 1989). The visually impaired older adult often chooses to maintain close emotional ties with families and friends (Lang, 2000). Situations that arise out of chronic illness are exceedingly complex and require many different strategies. Inner resources and inner strength have been identified as important resources for bearing losses; however, it is not clear how individuals develop these resources. Certain individuals reformulate or redefine themselves in relation to their losses (Charmatz, 1983; Morse and Carter, 1996; Yoshida, 1993).

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Psychological resilience describes older adults who are remarkably adept at preserving a sense of well-being (Rowe and Kahn, 1997). The fear of growing old and thoughts related to progressive visual deterioration can affect the older adult’s quality of life (Wahl, Schilling, Oswald, and Heyl, 1999). Blind older adults will do everything to compensate for their loss and thus preserve their behavioral and emotional functioning for as long as possible (Backman and Dixon, 1992). Psychological consequences of visual impairment can include depression and a loss of personal control. In one study of older adults, self-reports of depression and lowered morale were significantly more prevalent among those individuals with severe visual impairments (Gillman, Simmel, and Simon, 1986). Although optimistic, blind women described anxiety and depression and a loss of independence or personal control (Gillman, et.al.,1986; Moore, Constantino, and Allen, 2000). Older adults who were severely visually impaired were significantly more depressed than those with minimal visual impairments (Kleinschmidt, Trunnell, Reading, White, Richardson, and Edwards, 1995). Psychosocial consequences include a decline in leisure activities and in everyday competence (Horowitz, 1995; Rudberg, Fumer, Dunn, and Cassel, 1993). A survey of 56 older adult women with visual impairments revealed that the duration of visual impairment significantly predicted the duration of loneliness (Barron, Foxall, Von Dollen, Shull, and Jones, 1992). In another survey of 87 of blind adults, age 65 and above, those who were satisfied with the network of social support reported less loneliness than those who were dissatisfied (Barron, Foxall, Von Dollen, Jones, and Shull, 1994). The strong desire and their ability to maintain connections with others in their families and their communities kept loneliness from becoming a major factor in their lives (Moore, et. al., 2000). Support systems are vital to health maintenance and improvement (Pender, 1996). Support groups provide personal warmth, encouragement and even love (Pender, 1996). Consistent groups, such as the weekly social gathering where the visually impaired older adult friends meet, encourage self-expression and become a source of supportive coping with the experiences of blindness. Individuals need connections to other individuals. The world of the visually impaired individual has changed and become smaller, darker, and possibly colder. The need to have friends and to talk to them is vital. A conversation on the phone or at a social function enlarges and lights up the world of the visually impaired.

From the Conversation … As already stated, although the main learning objective of the study was to understand discourse about sexuality, the friends spent the greatest amount of time in their conversation talking about blindness, a celebration of their lives as blind friends along with on-going mourning of their vision loss. Each week that I had met with them during my clinical practicum, no matter what the primary subject matter, the friends related everything to their blindness and moved into grieving their loss of sight while expressing joy in their friendship. In an attempt to have the reader pay specific attention to their comments, I have “bolded” and “italicized” the excerpts from Betrice, Syndy, and Ruby. These ladies have inner strength and resilience that they share with the others. As you will see from the excerpts of the audiotaped conversation, each of the nine friends participated actively. In the course of their overall

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conversation they articulated what they felt when they became blind. “It was a shock.” “I felt lost.” “I felt uncomfortable …discouraged… bitter at myself.” “I didn’t feel like a whole person anymore.” “There’s no play thing of losing sight.” “It just made me feel very, very inadequate…it devastated me and affected my self-image.” The tone of the interaction while discussing blindness was serious yet positive and optimistic. During their entire discussion of blindness, five figures of speech were regularly employed that symbolically expressed the sentiments of the friends: “Worry is a waste of time,” “Pick yourself up,” “Dust yourself off,” “No man is an island” and “We’re all in the same boat.” In Excerpt #1 below, the friends encourage Horace, the most recent member, to identify and share his discouragement and pain. He paints a verbal picture of frustration that blindness has brought to his life and his concomitant feelings of powerlessness, dependence, and bitterness. Ruby encourages Horace to talk. Other friends respond sympathetically and realistically. Betrice mentions that “it won’t be the same” and tells him he needs to increase his self-confidence. Excerpt # 1

Justin

Go ahead. Don’t hold back, Horace. Let it all flow. No, but I was just sitting down just listening to what everybody was saying. And I… Are you married? Shussh..go head gotta, myself, I feel lost myself of the things that what I used to do I can’t do no more. And I feel lost because, uh, I don’t like to be, you know, I like to do it myself, as I could do it myself and I don’t feel comfortable no more. It looks like I’m bitter at myself and it’s, uh, the things I used to do I can’t do no more. Like what? Like a lot of things… go down town and this and that. I can’t do that no more. Before I used to run the whole town. I knew every place in...in (names town), But I can’t… not just (names town), I mean all over. Now I… Yeah Mmm Hmmmm You could You could get somebody to take you down there. You could do those, Horace, if you go to school and they teach you how to get around. Right

Horace Ruby Justin Betrice Justin

Oh, I did go to school. Okay. But you have to have nerve. You got to get your confidence up. You have to have faith in you.

Ruby Star Horace Justin Ruby Horace …

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Justin Horace

Betrice Ruby Star Justin Star

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Star Horace

…You have to have the confidence to get all around. I get discouraged, because you hate to…to depend on people to help you all the time. I mean, that’s my feeling. Betrice Yeah Ruby Oh, yes. Jilian Yes…I feel that way, too… Star Well that’s why they have Mobility and Orientation until you… are sufficiently acquainted with things…where you can go on your own. Jilian … It’s very frustrating. Ruby I don’t think he means… Horace I try…I try… Betrice It won’t be the same, Horace… But you can do it… Horace … I seen the time…when I used to cross the street in front of my house. I can’t even do that no more. Betrice …You have to have more confidence in yourself. In the excerpt below, Horace felt comfortable enough to share more about his blindness with his new friends. Many became active in the conversation empathizing with him, encouraging, supporting, and advising him. Betrice encourages patience when dealing with blindness while Ruby encourages the friends to help Horace heal. Continuing their intervention with Horace enhances aspects of their unity and identification as friends.

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Excerpt # 2

Horace Jilian Betrice Star Ruby Horace Betrice Ruby Horace

…and I feel bitter at my, you know, a little bit at myself. Frustrated Then Horace you have to have a little patience. Horace somebody from the Commission… What we can do now is we can help him out …You know to… heal… That’s my, my uh… …your experience …Yeah, we can help him… uh… you know. … And it hurts!

Ruby

Yes… Someone from the Commission for the Blind will come and work Star with you until you feel… until you feel some confidence Oh, I’ve been through all, I’ve been through that. He’s been through that, he said. I have been through that… But he didn’t let him, his, but his confidence didn’t come up through that.

Horace Ruby Horace Ruby

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…I just lost all of my… that what I used to do for myself, I can’t do it no more. (In the background)You done lost your nerve. You lost your nerve. Star Well nobody can do the same things they did before, you just have to adjust to a new way of life. I used to go downtown, walk home, go to the store, I can’t go to the block now and try to cross because I can’t see nothing. Well you’re …gonna do it, you can’t see. You’re gonna have to do without your sight and so long as you keep telling yourself that, you’re never gonna get anywhere. That’s right. But I’m not, I mean, there’s no play thing of losing sight. No No It is no joke. That’s for sure.

In Excerpt # 3 below, Betrice ratifies Horace’s comment about not babying himself and she encourages him not to be bitter. Calling him by name again, Star acknowledges his feelings and ratifies them with a figure of speech, “Oh everybody has their ups and downs, Horace.” She follows with active advice, “Just don’t stick with it.” At that moment, Syndy in her soft-spoken voice addresses Horace by name saying “We’re in the same boat, Horace.” Later Syndy returns with an active, empowering statement perhaps directed to Horace but also directed to herself and her other friends who are grieving their loss of sight, “You have to forget what you cannot do and just go ahead and do what you’re able to do.” Betrice ratifies Syndy’s statement saying, “That’s the humility” indicating a more peaceful and spiritual perspective of acceptance of blindness. Excerpt #3

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Horace Betrice Horace

I don’t never baby myself. No, and don’t be bitter. I mean I do get, I mean, I.. I.. I.. mean, I’m me. When I’m by myself...I do get a little bitter at, you know … Star Oh everybody has their ups and downs, Horace. Just don’t stick with it. Horace Oh no, you gotta let it go. Syndy (softly) We’re in the same boat, Horace. Horace Yes. Ruby Did you hear Syndy? James I thought I couldn’t get by when I found out I couldn’t drive anymore. Jilian That was the hardest thing. Betrice That’s devastating… Star That was devastating… Betrice …when can’t drive anymore Star …I lived in my car. Jilian Driving and reading.

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Jilian Syndy Jilian Syndy Betrice

I taught the wife to drive and now she’d have to assume the responsibility by herself… That was a smart move that I made when I taught her to drive…by herself. Driving and reading… Yes… …That’s my hardest problem. …You have to forget what you cannot do and just go ahead and do what you’re able to do. That’s “the humility”.

In Excerpt # 4, James begins asking about Horace’s use of the cane. James describes the cane as a source of power. Horace downgrades the cane. Star, Justin, Betrice, and Ruby continue in their struggle to assist him. They encourage him to take a more active role in his healing, to take on the responsibility for his well-being. They are direct and persistent in their caring. Excerpt # 4 James Horace Star James Betrice Ruby Star Horace

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Star

Do you use a cane? Yeah, I use a cane but that’s no good when you can’t see nothing. What…what…No…Oh, yes it does. Uh, uh, uh, it’s the power. Horace, you could do it. Believe you me, you could do it. Horace, have you had someone walk you down the street yet? You don’t say “try”, do it! Oh yes! Now I do! But I mean, I feel like, uh, you know, that I try to do it myself, But uh I can’t do it no more… And I got, it got, I’m not saying to, I’m saying it for myself. There’s uh, there’s some unbelievers, there’s nothing wrong with you. That’s right. They don’t believe my weakness… They’re going to have to.

We continue to see examples of the friends at work endeavoring to empower Horace in Excerpt # 5. They promote behaviors that are active and foster independence and internal power. James takes an active role, encouraging Horace to become active in organizations and to volunteer to “get more enjoyment out of the organizations and out of life itself.” Syndy suggest books on tape to increase independence and healing.

Excerpt # 5 James Horace James

Horace, do you belong to any organizations? Yes. Okay. Be more active in them. You’ll find that uh you get more enjoyment

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out of the organizations and out of life itself… (Hesitantly) Yeah… …Yes, indeedy. Volunteer to do more things in the organization, in your community… That’s right. And uh… Well I help people, the ones who can’t help…you know what I mean. Yep. Um-hmm I do my best anyway. Do you get books on tape, Horace? Oh yes, yes. I got all that.

In Excerpt #6 below, altruistic unity is the theme initiated by Ruby. Horace mentioned going to church and Ruby sets forth an invitation, “And I’m going to invite you to come to mine sometime…to give you some confidence.” Horace’s response is immediate and enthusiastic, “Oh, I would love to!” Ruby reacts to Horace, saying, “all you need is some pulls, someone to help you.” Justin and Betrice echo Ruby’s sentiments about needing someone to help you. Justin comments “You’re in luck. You got us.” Betrice paraphrases saying, “You gained us.” Then Justin continues, “You got the people around you here.” Horace hesitantly concedes. Excerpt # 6

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James Horace Justin James Horace Ruby James Horace Ruby Horace Ruby Horace Ruby Justin Betrice Horace Justin

Did you belong to any groups…before you lost your sight?… Oh, yes. (simultaneous conversation) Maybe some are just stronger than others. …I mean, do you still try to… I go to church every week. That’s good. …keep in contact with those people. I…kinda lost… And I’m going to invite you to come to mine sometime…to give you some confidence. Oh, I would love to! See all you need is some pulls, someone to help you. Yeah, I just lost everything…I just… Yeah. You in luck. You got us. You gained us. Oh, I mean, you know what I mean. It’s good like uh… You got the people around you here.

Syndy begins Excerpt # 7 with an active and accountable statement, “People will be more inclined to come to you but you have got to stop being passive.” She characterizes Horace’s

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behavior as passive. He does not comment. He does respond to Ruby’s relevant question saying that it is good to meet people. Ruby then comments on his move towards greater involvement, “Now you’re moving up a little bit, you’re moving around a little bit.” Horace continues talking and shares his alcohol recovery status. All of the friends talk spontaneously. Star talks directly to him, using his first name. She empathizes yet points out reality saying “Horace, we’re all in the same leaky boat” indicating it is not smooth sailing and it can be hard to deal with blindness but they are together in the boat. The meta-message is that together with the support of each other people have power over difficulties in life. In his risktaking to share his feelings in the excerpts thus far, Horace has given other friends the opportunity to grieve and share their sorrow about the impact of blindness in their lives. Excerpt #7 Syndy Ruby

Horace Voices Ruby Horace

Betrice Ruby Horace All Star

People will be more inclined to come to you but you have got to stop being passive. When you started to come, how you, how you, how, since you been coming here, so what you found out, out, more since you been startin’ to come to this group? Oh, I feel uh, I feel good because it’s good to meet people… Yeah, yes. Now you’re moving up a little bit, you’re moving around a little bit. …you know, you know, social. And why’s everybody’s here, there’s nothing to be ashamed of. I was a recovering alcoholic for six years and you know, and you know, it’s beautiful, You know? It’s beautiful… Yeah, yeah. Okay …And it’s almost like, you know, joining, you know? And I learned a lot. (Talking at once – Indecipherable) Horace, we’re all in the same leaky boat.

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Two female friends in Excerpt # 8 below described the loss of friends related to blindness. “I don’t know whether they’re afraid to be with me, or…they’ve just disappointed me and it seems almost like they’re afraid to call.” “Like if she comes over my house, she doesn’t know whether to say hello to me or anything.” Excerpt #8 Jilian

Dorothy

Well I find that since I lost my eyesight, the people who I thought were my friends seem to, uh, I don’t know whether they’re afraid to be with me, or… I mean, I used to be the one to pick up everybody and drive places, and it seems like… uhm…(pause looked like she was about to cry) they’ve just disappointed me and it seems almost like they’re afraid to call or… and it’s been very hard, You know, my sister has a girlfriend just like that. Huh. Um, lemme see, she couldn’t understand how being blind is and how handicapped people do

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things. She just can’t understand that. Like if she comes over to my house, she doesn’t know whether to say hello to me or anything. Because she just doesn’t understand, you know, how handicapped people are. And so finally a couple of weeks ago when we went out to eat with my friend, and I, uh, we went out to dinner, and she was with us, and after that, I guess, she must realize that the blind can do anything just like anybody else… That’s right. ….But she couldn’t, she couldn’t realize that. Couldn’t relate to it. She couldn’t relate to it. Uh-hmm.

Much of the discussion about blindness was uplifting and motivating as evidenced in Excerpt # 9. “I’ve gained a lot” was echoed over and over again. They focused on acquiring friends who gave them support. Some described getting closer to their families. Betrice, Ruby, Star, and Justin specifically identify this particular group of blind friends as a positive aspect of their blindness. Excerpt # 9 Justin

Betrice Star Ruby Betrice

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Star Ruby Betrice

Ruby Star Betrice Star …

Plus, plus… look at the people you have met since… (talking about blindness)…since you been in that condition…And how great they are and how much support we get from one another… in order to carry on, so uh, so we haven’t lost anything concerning… If you want to look on the bright side… of life…you know. I tell you, um, and I’ve said this not too long ago, I feel so bonded to my blind peers…more than any other group that I associate with… Oh yeah, what binds us together is the blindness. I do, too….that’s true. …And I recognize this because I am very church-oriented and I’m very close to my church family… MmmHmmm Yes, I am. …But I find that I miss this group, and when I started going to P.P.… (summer day camp for the blind) And then I stopped going and on Thursday I woke up and I said, “Oh my God, I feel like I should be with my guys going up to P.P. And I’m so, I feel so comfortable, you know, with my peers here until…It’s amazing! And when Justin talks about friendships, and that is so true! I feel like I have made some great friends since I’ve lost my vision. I have, too. I put together a cruise for 5 blind people, 2 men and 3 women—the oldest was 94, 81, 75, 74, and 73. And we got along better than family… Yeah. I mean, we just had a ball for ourselves.

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That’s Great. That’s great.

In Excerpt # 10 below, Syndy talks about how her blindness has affected her. Two other friends, Betrice and Ruby are empathetic and expressive. Excerpt # 10 Syndy Betrice Syndy

Betrice Ruby Syndy Ruby

We just can’t see like normal people or…and we are not abnormal so I should not say that… Like other people. Like other people, yeah. But we can do a lot of stuff. Even my own relatives think I cannot do this and cannot do that …when I do it they are amazed. Like, to prepare a complete meal, it can be the most complicated dish, as long as I have access to whatever I need… Uh-hm. Everything is there. Everything is there. …Everything is there. I can do just the way I did… before I was blind. That’s right. Same with me.

In Excerpt # 11 and 12, we see examples of what the friends describe as the “amazingness” of blind individuals. Four times the word “amazed” was used in describing how sighted people feel when they get to know blind people. Ruby, Betrice, along with Syndy take an active role.

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Excerpt # 11 Ruby Horace Ruby Betrice Horace Syndy Jilian James Betrice Horace Jilian Horace Betrice James Star Horace

I bake a better cake visually impaired than I baked when I had good sight. (Laughs) Right Good cake. Yes. Yeah, that’s the way that life is. Yes, we can do lots of stuff…lots of stuff. Oh, Yeah. And you let each experience be a lesson or tool… Learning experience. Oh yeah… … a learning tool for future experiences… It makes you stronger. Yeah. Yes it will. …That’s right. Because… you know what you did in your last situation so you use that experience and alter it as necessary… You know, when blind people get together… Mmmmmmm Hmmmmmm!!!

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Excerpt # 12 Ruby

Betrice Ruby Betrice Syndy Jilian Ruby

When a..when I married Eric, his…he had children and his daughter and she said, “Dad! You’re marrying a blind lady?! Well how’s she gonna do for, what’s she gonna do for you?”… Laughter… …He said, he told her, “You wait until you see her. She can do anything anybody else can do”… That’s right. MmmHmm!! Right…MmmHmm! …And she was amazed, you know. You know …So that’s what you know blindness will do to some—be amazed…

Excerpt # 13 illustrates that although the friends are emotionally attached and interpersonally involved with one another, and perhaps because of it, they can disagree with each other and directly identify their differing thoughts and feelings on matters. Betrice does not agree with Dorothy’s comment and she doesn’t hold back, rather she lets her friends clearly know. One or two members are not quite comfortable enough to take a firm stand so they ride more passively on the fence. Comments such as those made by Syndy and Betrice characterize the oneness and positive nature of this group of friends. Excerpt # 13

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Dorothy

Betrice Dorothy Betrice Ruby Dorothy Ruby Betrice Syndy All Betrice Many Ruby Justin Dorothy

You know what they say though? That I notice with a lot of blind people, they say that some blind people are more bitter for their handicap then other handicapped people. More what? They’re more bitter… Bitter? Well…that’s because they let themselves get that way. …Than …than , ah… than other handicapped people, you know. Oh they more…blind people are more bitter?… I think they are more frustrated than angry or bitter ..I don’t agree with that. Maybe they don’t know about our group. Laughter They need to come observe us! Yeah…yeah Yeah…How about that. Yeah You could change ..You could change that…You could change that attitude on that. Like some people…like a lot of people… I guess, they figure the blind don’t help one another like other handicapped do. I don’t know. Somebody had told me that. I don’t know if it’s true or not.

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Syndy

James

I’m not buying into that. It just depends on who you’re talking to… It depends who you’re talking to, I guess. Yeah. …That blind people… that can share things with others that you can’t share with… …There’s something … of all listening that can give them some information on how to support…themselves in the condition. (softly) I believe… I believe that (said softly and had a conversation with those around her that could not be fully deciphered) because some people didn’t share things while they were sighted…does not mean that… I think disappointment…attitude and attainment has a lot to do with it.

Below, Justin had asked for a definition of “sexuality”. Betrice responded by relating sexuality to her blindness. Excerpt # 14 Justin Betrice

Star Betrice Star Betrice

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Jilian Betrice

Star All Betrice Star … All Star …

What is… what is sexuality? (pause 2 seconds) I feel sexuality is how you see yourself and how you feel about yourself. I was thinking about, um, when I first lost my vision. It affected me quite a bit because I didn’t feel confident anymore and I think that also dealt even in the realm of my sexuality. I didn’t feel like a whole person anymore. And I was… You couldn’t compete. …Well not so much that I had to compete with anybody, but just within the new relationship of my, my you know my marriage… Uh-huh. Uh-huh … I just began to feel very inadequate…Uh, un, I wouldn’t say un-, UNfeminine. I just did not feel … Desired ...like I was as sensual as I had been. And it just made me feel very, very ….… inadequate. And it took a while for me to overcome that feeling. With the help of my husband, of course, and his constant reminding me that I was still the same person, ah... it still devastated me and it affected my…my self-image. And so I had to overcome that over a period of time. And, you know, I’m still not quite there, I don’t think,.. but I feel a lot better about myself than I used to… Don’t you feel, when somebody pays you a compliment and they say, “Gee, you look great,” you think, “Hmmm, I didn’t do too badly”, you know?… Laughter Well… Or they’ll say to you, “How did you put your make-up on?” and I’m thinking, “It’s just hit-and-miss.” You know? It just happens that … Laughter This time I don’t look like a gypsy; who knows what I’ll look like

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tomorrow! Well, years ago, um, speaking of make-up, in my religion, basically we don’t wear make-up… Um-hm …but there was a time that I used to arch my eyebrows when I could see and then …I couldn’t do that anymore, so I had to let my eyebrows grow back… So you don’t have that quizzical look anymore. (Smiling) No. Ah.. (Laughs loudly) Now she’s for real… Yeah …She’s all real now. She’s all real now… At first she was not real… Yeah, yeah...but a… A plain beauty… …There are a lot of adjustments that you make.

In Excerpt # 14 above, Betrice characterizes sexuality as “I feel sexuality is how you see yourself and how you feel about yourself.” She uses the “I” pronouns in her discourse. She described the difficulties she encountered soon after her blindness related to her level of confidence, her feelings of inadequacy and femininity, her self-image and its effect on her sexuality. “I didn’t feel confident anymore and I think that also dealt in the realm of my sexuality. I didn’t feel like a whole person anymore.” She described how her husband helped her. She closed with, “And, you know, I’m still not quite there, I don’t think, but I feel a lot better about myself than I used to….There are a lot of adjustments that you make.” Clearly, Betrice is in touch with and owns her feelings. She articulates that although blindness has severely affected her, “…it still devastated me,” with the help of her husband she is in the process of overcoming it effects and making appropriate adjustments. She is driving the process. The following Excerpt # 15 below, illustrates Ruby’s storytelling expertise while she is describing her vision loss. It is filled with imagery, detail, laughter, and encourages camaraderie. Listening to the sounds in the conversation is a vitally important component of interaction for these blind friends.

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Excerpt # 15 Ruby

Betrice Ruby

Yes, um… Speaking of, um, sexually… Like, she was saying about losing her sight,…I think I was 49, and I, at the time, was divorced, and, and, like you know about “Oh my Lord! Wonder if, um, you know, losing my sight, and um, wonder was anyone going to pay me any attention ‘cause I’m blind, you know, and uh, you know, and what’s, what’s gonna happen with my, the rest of my single life being you know divorced, and feel if anyone gonna pay me any attention? You know?.. Yeah …So I.. what I did, did, do, I did, I kept on going, was working at the time, and um, I’m a church-going person, and I love going vacationing, and tour

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All Ruby

All Ruby Betrice Ruby

All Horace Ruby All Betrice Ruby Star Ruby Star …

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Ruby

Betrice Justin ALL Ruby Betrice Ruby

Betrice

and stuff like that and I began just like Star said.. I didn’t wear make-ups, but I wore my regular clothin’, my still clothes, I did my same hair my same way, I used my same… I used my same everyday cleaning house, cooking, I wore my clothes same. Then again I began to look at myself and said, “Well, I have seen blind persons before and some of them didn’t look too good.” I said, “Well, I maybe be blind but I’m not gonna be blind-ugly!”… Laughs Laughter …So I begin to went out and shop and bought all new clothes. I didn’t have my ears pierced.. I pierced my ears. I bought me some nice gold earrings. I changed the style of my hair. And then I begin to get, “Well, hello there!” You know? I said, “ALL RIGHT! It ain’t too bad”… Laughter …So uh the sexual part, well..I was not having sex, but it made me feel sexually… Right. Right. ..And they begin to call me, “Oh you’re a NICE, sexy lookin’ lady!” I said, “Yep!” It perks me up. And then behold! 19 years later, I got married. So you see, at age 54, okay, sex begin to um, fire get to burning… Laughs Hearty laughter Frisky…ha …And you start shoveling the coals!… Laughter and making comments Like its all new… …Like she said….And the gray hair was there and its still there, and shovel those coals a little bit and throw a little kerosene on it… You just stirred up those coals… …That’s all I did!… Shoveled the coals. Scattered laughter …Stirred it up and got rollin’...and I had a beautiful marriage and lovely and Lord called him home and uh, I said, “Well, Lord, what am I gonna do now?” but I still love him in heaven. Get another pair of earrings and change your hairdo again. You still love him Laughter Get a what? Get another pair of earrings and change your hairdo again….It still works! Scattered laughter…While Ruby is laughing loudly It was wonderful walking down the aisle, being visually impaired, stepping in heels, My son walking beside me, you know. So it was wonderful. So um, I don’t think it’s…sex never dies as long as you’re alive and feeling well. And able and capable—it’s always there. It’s all how you feel about yourself…

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Exactly. …You have to love yourself and recognize who you are. And the sensuality, all of that comes… This is the stage that I… Exactly. Exactly. Yeah. Right. Exactly. …that I came through, that I came to, I should say, after I realized I was still the same person and I began to feel good about who I was. I began to feel that sexual, uh, um, nature, so I guess I was using the poker again, huh?… Laughter I told you …Stirred some fire there. Yeah.

The details and images of Ruby’s story in the above excerpt create scenes that enhance understanding and interpersonal involvement among the friends. Ruby shares the story of her vision loss, the processes involved in her grieving and dealing with her loss, and her conscious decision to move on with her life. More than likely, most of the friends could relate to her fears and concerns. She searches her memory for her age when she first began losing her sight. She was “ a young age” and “divorced”. She exclaims. “Oh my Lord!” and thinks about her nebulous future with its potential loneliness. “…wonder was anyone going to pay me any attention…what’s gonna happen with my, the rest of my single life.” She describes the process of dealing with her loss by going on with her life day by day the way she always did until she experiences an enlightening… “I kept on going,…working at the time,…church going, …wore my regular clothin’,…did my same hair my same way, …everyday cleaning house, cooking,…wore my clothes same. Then I began to look at myself.” Ruby was apparently far enough along in her grieving to have the energy to realistically assess herself. She was ready to make a decision and ready to change what she believed needed changing. She describes to her friends the exact point of her epiphany … “Then I began to look at myself and said, ‘Well, I have seen blind persons before and some of them didn’t look so good.’ I said, ‘Well I maybe be blind but I’m not going to be blind-ugly!’” She is talking to her friends knowing that they, too, are all blind. She feels comfortable enough to take the risk and expose her true, though rather uncomplimentary, thoughts. Ruby describes her feeling of empowerment over blindness. “…I begin to…went out and shop and bought all new clothes…I pierced my ears. I bought me some nice gold earrings. I changed the style of my hair…” She describes being noticed and began to hear, “Oh you’re a nice, sexy lookin’ lady!’ I said, ‘Yep!” The process and the action of her change reinforced her self-image. “I said, ‘All right! It ain’t too bad’…it made me feel sexually.” Ruby describes beginning to feel like her whole self again. She continued her story stating that nineteen years after her divorce “…And then behold! …I got married…at age 54, sex begin to um fire get to burning…shoveling the coals!…and the gray hair was there and its still there, and shovel those coals a little bit and throw a little kerosene on it…stirred it up and got rollin’ ..and I had a beautiful marriage and lovely and Lord called him home and uh, I said, ‘Well, Lord, what am I gonna do now?’…but I still love him in heaven.” Although the loss of her husband happened one year previous to the conversation and Ruby is again mourning her loss, she had learned from having to deal with the loss of her

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vision that life goes on. She laughs genuinely and heartily when Betrice tells her to get another pair of earrings and a change in hairstyle…in other words “go on living.” Ruby is a very good story-teller and through the details, Ruby creates rapport with her listeners getting them involved in her story. Spontaneous laughter, often hearty, broke out seven times during her story evidence of the friends’ participation, understanding, and emotional involvement. Through Ruby’s story telling with its vivid details and the musical quality of her utterances, her life experiences become alive. Ruby captivates her friends with the details and images. Her walk down the aisle at age 54 is depicted in detail. She illustrates to her friends how wonderful she felt “being visually impaired, stepping in heels, my son walking beside me.” The details vividly create the scene and rapport is developed with the listeners. As Ruby completes her discourse about her marriage and ongoing sexual activity, Betrice again describes her beliefs about sexuality, “It’s all how you feel about yourself…You have to love yourself and recognize who you are. And, the sensuality, all of that comes…this is the stage that I…that I came through, that I came to, I should say, after I realized I was still the same person and I began to feel good about who I am. I began to feel that sexual, uh, um, nature, so I guess I was using the poker again, huh?…stirred some fire there.” Through her words, Betrice once again, represents herself as independent and accountable for her attitude and feelings and the direction of her life. Syndy talks about how blindness has affected her sexuality in Excerpt # 16 below. Excerpt # 16 Syndy

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Ruby Syndy

Betrice Ruby Syndy

All Ruby Many Betrice

Well I haven’t found that my blindness has affected me too much except that I can’t go by myself, and things like that. But I’m able to function much the same way as I did before. I can just about do everything. Um, my husband is alive, for those who do not know that. He’s in Trinidad and I am here. And um, I have to really keep it before my, my, my mind’s eye that my husband is alive and in Trinidad, because I still get lots of compliments and invitations to go here and there, so I guess I can be as active as I want to be… Yeah …So…my blindness really isn’t affecting me that way. And um, like what Ruby was saying there just now, people are always amazed at what the blind can do… Yes. Uh-hum. …Uh-hmm. Oh yes. Ah yes. And well the sexuality of course that has to, um, go on hold so, um, you know…(pause) we don’t excel in that area, but if need be. .. Nothing is dead., eh. Laughter Your partner’s in Trinidad!…no.. That’s why! (Laughing) You can’t get it from over there. Laughter One thing we always remember, should always remember, is even in our youth, and in our lovemaking at the time, our eyes were closed…

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That’s right, too. That’s right, too. Mmmhmm That’s right. …So we didn’t need any vision. Nope… not me. I didn’t want to miss nothing. (Laughs)

Above, Syndy articulately describes blindness’s effect on her activities. She uses “I” pronouns and positions herself as somewhat passive, yet realistically self-determining. Syndy is Trinidadian-American and perhaps her culture is an influence. She is soft spoken, however, she is persistent in her desire to be heard. Because she is well-respected and her words are valued, it is the pattern in the conversation for another member to ask if the group has heard what Syndy said. The group then quiets down to listen and respond. This interactional pattern occurred three times in this conversation. In and of itself, Syndy’s behavior is somewhat passive, yet her persistence until she is heard signals determination and action. Betrice makes it a point to remind everyone that “One thing we always remember, should always remember, is even in our youth, and in our lovemaking at the time, our eyes were closed… So we didn’t need any vision.”

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Laughing Matters The humorous interlude in Excerpt # 17 is an example of how the friends laugh together as they continue in their efforts to engage and empower their newest member, Horace. “Laughter is the closest distance between two people” is a quote attributed to pianist and comedian, Victor Borge. “Humor is a distinct, pleasurable affect and laughter is often its companion” (Weisfield, 1993, p.142). Humor is a powerful healing force (Satir, 1988). Laughter assists people to make meaningful connections with others while reconnecting internally (Kwan, 2002). Laughter and positive humor surpass language barriers and establish a common ground to build relationships (Kwan, 2002). When people in a group are comfortable with and trusting of each other they are open to laugh together and to bond closer together (Apte, 1985). Humor is multidimensional and includes cognitive, emotional, physical, and behavioral components (Solomon, 1996). Humor is a simultaneous process of a) arousal to the familiar cues indicating the situation as humorous, b) problem-solving or making sense of the situation, and c) resolution accompanied by the emotional response of mirth and the behavioral responses of laughing, giggling and smiling (Solomon, 1996, p.250). Laughter encourages the release of anxiety and tension while it permits the expression of ideas and feelings and facilitates coping. Two elements make up the humor repertoire: perspective, a coping response, where, instead of getting upset the individual laughs it off and outlook, appreciation of life's absurdities (McGhee, 1979). The older adult blind friends genuinely enjoy laughing together. Their laughter is healing for the individual and for the group as a whole. Laughing together in this conversation seemed to enhance their intimacy and involvement. During the seventy-minute conversation, the friends laughed as a group one hundred and five (105) times excluding the individual laughter. Ruby spoke 241 times and 18 % of her comments were humorous; Betrice spoke

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183 times and 14 % of her comments were humorous; Syndy spoke 59 times and 8 % of her comments were humorous. However, humor was not always seen as the primary coping strategy among African American caregivers of loved ones with dementia (Kosberg, Kaufman, Burgio, Leeper, and Sun, 2007). Moreover, Vereen, Butler, Williams, Darg, and Downing, (2006) cautions counselors about the use of humor to reduce stress among African American college students. Perhaps laughter and humor within this group was not a way of dealing with the complexities of blindness but a sign of true friendship and the easy of communication. Excerpt # 17 demonstrates interpersonal involvement and increased coherence that developed in the conversation through the talk and the laughter among friends. Good-natured teasing, joking and laughing is evident.

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Excerpt # 17 Ruby You single? You single? You single? Horace Um-hmm Ruby Oh, okay. We can call each other because I’m single too! All Laughter Star Hey, Ruby! Watch it over there! All Laughter Ruby (laughing) CAAAALLLLL MEEEE Betrice (laughing) What’s going on over there? Horace (laughing) Yeah….I’ll get you’re number (indecipherable) Ruby (laughing) We gotta get Horace going here. Betrice I’m telling you…laughing Horace (laughing) That’s right..yeah. Star She’s pushy, isn’t she? Horace I’m gonna call that one. Star I thought Justin was bad but boy…sheRuby You’re gonna do what? Horace I’m gonna call that one. That’s a good one! All Laughter Syndy What did he say? Horace Oh..boy. No I mean… Star How old are you Horace? Isn’t that what you want to know, Ruby? Ruby Yeah…hahahahahaha All Laughter Horace What? Star How old are you, how old are ya, Horace? Horace I was uh… Justin He had a birthday couple of day ago… Horace …I just had a birthday Tuesday. Ruby Oh! Happy birthday! All Happy birthday! Star What year was it? Female Voices What year was it?

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Older Adults: Quality of Life Issues How old are you? Horace July the eighth Dorothy July the eighth? Betrice That’s my daughter’s birthday. James But how old though? Many Laughter Betrice Yeah, he’s dancing around it! All Laughter James Yeah, He’s dancing around it. Betrice He’s dancing around that one! All Laughter Betrice Horace, we want a direct answer now … Horace Oh, sixty-eight… Star Do you have a degree after your name? Ruby Alright James He’s still a young man. Betrice Congratulations! All Applause…Ahhhh Horace I’m fairly young yet, you know. All Talking at once Star Wait a minute; I’m not done asking questions yet. Betrice Star’s not finished the interrogation. Star Horace… Betrice Hold on Star Horace, do you have a degree at the end of your name? Betrice Are you “doctor”…anybody? Star No, do you have a BA? Laughter Horace No, no… Star T hat means “Bank Account.” All Laughter James That’s pretty good. Ruby B.A.! (Laughing) Horace Oh, I have that too! Yes! All Laughter Betrice Hey, Ruby, I’m going change seats with you. All Laughter Star Ruby, is there anything else you want to know? Syndy Is he married? Betrice Is he married? Ruby No, he said no. Star No…she had found that out before. All Laughter Ruby He’s not married, he’s 68 and he’s got a BA. All Speaking and laughing Syndy …Ruby, you have already tried that name out?

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Estelle A. Pisani James Horace Ruby Betrice Star Horace All Betrice Ruby Syndy Horace Ruby Star Ruby Star Ruby Betrice Star Betrice Ruby All Star Betrice Ruby All Horace Ruby All Horace Ruby Horace All Star Horace All

…You may be in there with two people… but you’ve got to stand alone.. Yeahhh…right Laughing Start humming, Syndy. (Hums the “Wedding March”) That’s right. That’s right. I’m getting a lot of help. Laughter But in the meantime… …Yeah!… While you’re in the dancing mood… We gonna dance up there. …We all gonna be angels up in heaven!! So that settles… Hey, Ruby?. Yeah? Already he’s got self-confidence. Did you notice? Yes, yes! I think we got a smile out of him already. His tone of voice, his tone of voice has changed. All I have to say is sexuality is alive and well in this group. Amen! Laughter We’re stirring up the coals. Oh…Yeah…(laughing) All of use got canes, we’re just poking a little bit… Laughter Warming it up We’re just doing a little poking…(laughing) Laughter” Oh man. That’s a good one Welcome to the club, Horace. Thank you. Laughter waning Don’t you feel better now, Horace? Yeah, I got a lot of relief off. Yay! Applause

Star notices a change in Horace, “Already he’s got self-confidence. Did you notice?” Ruby agrees. Betrice reinforces the change saying, “I think we got a smile out of him already.” Star continues, “His tone of voice, his tone of voice has changed.” Horace has accepted his engagement into the group of friends (and if the female friends have their way, possibly an engagement with Ruby, as well). The rhythmic interchange continues. Betrice comments, “All I have to say is sexuality is alive and well in this group.” Ruby supports it with “Amen!” Star picks up on the central metaphor related to sexuality, “We’re stirring up the coals.” Ruby immediately counters with, “All of use got canes, we’re just poking a little bit…” Here, Horace jumps into the metaphoric fray, so to speak, and says, “Warming it up.” Horace’s metaphoric message indicates that he

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has become warmed to the friends by their interaction with him and the fires of emotional attachment have been ignited. He has become one of the friends. Ruby continues with a thread of the metaphor, “We’re just doing a little poking…(laughing).” All laugh and Horace says, “Oh man. That’s a good one.” Ruby then welcomes him saying, “Welcome to the club, Horace.” He thanks her. Star asks, “Don’t you feel better now, Horace?” To which, Horace replies, “Yeah, I got a lot of relief off.” And the friends applaud.

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The Pervasiveness of Blindness … The friends’ blindness brought them together in many ways. Blindness physically enabled them to become regular participants in their weekly gatherings, a forum of talk and socialization. Blindness emotionally bonded them so that they could become sources of support, inspiration, and hope for one another. Their talk became action in the conversation. The friends’ conversation centered mainly on the impact and pervasiveness of blindness on their quality of life. For example, blindness affected putting on make-up and arching eyebrows. However, as long as there was access to the necessary ingredients, it did not interfere with making a complicated meal and making a better cake than when they were sighted. Vision loss affected one of the friend’s ability to find his wife in their apartment and another friend’s capacity to walk outdoors. Whenever people see one another, there’s the potential for connecting. The blind person cannot see others. Therefore, there’s the potential to feel more isolated, a sense of being “alone” in the darkness. The future could look bleaker and more frightening. Horace described becoming “…bitter...” feeling like he let himself down by becoming blind and needing to subsequently depend on others more. Eight of the friends had been sighted and they had lost their vision when they were in their forties, fifties, sixties and seventies. During their sighted years, the friends described being able to do things such as driving an automobile, a symbol of independence. Then for each one except the friend born without sight, blindness moved insidiously into their lives and their lives changed. Blindness disrupted their lives, caused emotional distress, and lead to functional difficulties. During this conversation it became evident that Horace was just beginning his walk on the road to acceptance of his blindness and hopefully his ensuing peacefulness. Many of the friends had already moved beyond that point although they still experienced periods of ongoing sorrow. Like Syndy, Ruby, and Betrice, many of the other friends had been able to accept their limited independence and self-reliance as their current norm. They now needed to depend on others more and to plan activities more thoroughly. They accepted that ordinary activities like food-shopping would take more time and energy to accomplish and that other aspects of their lives, as well would be more complicated. However, these friends chose to reformulate the above functional complications and distress more positively in order to preserve their sense of well-being. Over time they redefined themselves in relationship to their blindness and accepted the successive changes with resolve.

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Chronic Sorrow… Chronic sorrow is characterized as pervasive, permanent, periodic, and progressive in nature (Eakes, Burke, and Hainsworth, 1998). Chronic sorrow is a normal response to loss. As in the case of these nine friends, people who are experiencing an ongoing loss or a single event loss might feel a need to re-grieve episodically. Chronic sorrow is most frequently triggered by confrontation with disparities associated with memories of a past reality (Eakes, et.al., 1998). The tide of sorrow might flow each time the blind person comes up against something new that he/she realizes has to now be done differently because of the blindness. During the conversation, many friends mentioned the disparity created by their blindness about who they were and what they had been able to do before their loss of sight, and who they were currently and what they could and could no longer do now. The unresolved disparity that characterizes chronic sorrow may be equated with experiencing loss in bits and pieces and waves (Eakes, et.al., 1998). The theory of chronic sorrow was derived from interviews with 196 individuals, young and old, who shared their experiences as people with chronic health conditions, as family caregivers of the chronically ill, or as bereaved family members. Over 86% of those studied showed evidence of chronic sorrow (Eakes, et.al., 1998, p.180). Although this theory does not address racial similarities, it would seem that much of the ties that bind support groups together would also hold true for Black women. When a person is forced to curtail lifelong sustaining activities such as reading and driving, the loss is basically equivalent to loss of a loved one (Frock, 2002). Due to their late onset loss of vision, the friends experienced ongoing waves of grief. Their grieving followed the progression of their vision loss. The more they were unable to see, the more they needed to talk in order to grieve their loss. In the weekly gathering each friend knew that the other friends who were participating also knew the meaning of blindness. During their group time together and through phone calls, they were able to share their sorrow with others who genuinely understand the sorrow. I reviewed my notes from the clinical practicum and realized that whenever I had an educational program where I encouraged verbal exchange and interaction, grieving and mourning took place. The friends would reminisce about the past with others who “had been there” and who would understand and listen. Groups of people who meet regularly to talk sincerely can generate group cohesiveness (Yalom, 1995). Members who participate in groups that have such genuineness to them can share in numerous therapeutic factors (Yalom, 1995). In this conversation, I observed cohesiveness and a sense of universality, we are all in this together. There was installation of hope, imparting of information, altruism, interpersonal learning, and existential factors such as gaining an understanding that life is unfair but by taking responsibility, life can be lived more fully and honestly. Each of the nine friends conversed actively about becoming blind. Some described initial feelings of shock, devastation, bitterness, inadequacy, and not feeling whole anymore. A few of them described fears of being left alone with few social relationships, and becoming lonely. Two friends described the loss of former friends alluding to the stigma of the disability. “I don’t know whether they’re afraid to be with me, or…they’ve just disappointed me and it seems almost like they’re afraid to call.” “Like if she comes over my house, she doesn’t know whether to say hello to me or anything.”

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Due to their blindness the friends experience waves of ongoing chronic sorrow. Their grieving never comes to an end, but they do reach a point where they can realistically assess their losses and the meaning of their losses and consciously decide to move on with living as blind individuals. Syndy articulated clearly, “You have to forget what you cannot do and just go ahead and do what you’re able to do.” Star said, “Well nobody can do the same things they did before, you just have to adjust to a new way of life.” The friends enumerated the importance of “determining you are going to adjust.” They talked about using a cane, listening before crossing the street, having patience, having confidence, having fun. Four times the word “amazed” was used in describing how sighted people feel when they get to know what a blind person can do. Much of the discussion about blindness was uplifting and motivating. “I’ve gained a lot” was echoed over and over again. Other statements implied acceptance, forward movement, and the need for connectedness. Members focused on acquiring friends who gave them support. Some described getting closer to their families. They reinforced the need to maintain connections with others in their lives, their families, and their communities. Many acknowledged their blind peers as a vital and positive aspect of being blind. Coming together to talk at this weekly gathering was one of their primary connections to the world. According to Moore, et. al., (2000) less loneliness occurs for those blind older adults who are satisfied with their network of social support than those who were dissatisfied. Syndy and Ruby identified making complicated meals and baking amazing cakes as a possible compensation for their vision loss and to preserve their behavioral and emotional functioning (Backman and Dixon, 1992). Situations that arise out of ill health are complex and require many different coping strategies. Blind women and men often make every effort to look their best so that others will see them as normal people as Ruby described doing (Weaver, 1999). During the 28 weeks that I met with the friends, the men dressed in suits and ties and the women in dresses, heels, and appropriate jewelry. Other creative strategies for healing described or exemplified by the friends included keeping positive attitudes, asking others for assistance, humor, and helping others. Betrice, Syndy, and Ruby, along with other friends show true evidence of inner strength and having found meaning and purpose in their lives. They have utilized their inner resources to bear their losses. Subsequently they have redefined themselves in relation to their loss as normal blind people capable of doing anything. This group of blind friends did not need to see each other to become interpersonally connected. Being together in conversation did that. The words they said and the way they said them brought them closer together. In the conversation, each friend was together with other friends who saw things similarly. Although they might not agree with everything, they saw the same things in terms of living with blindness. The group gathering has connected many blind friends. This group of friends has developed solidarity and interpersonal involvement. They perceive themselves to be a group with a distinctive culture despite race, gender and/or class. Within the parameters of this conversation they become empowered by their talk to “go on,” to heal, and to mobilize their energies. The friends’ support group provided personal warmth, encouragement, and even love and was vital to their maintenance and improvement of health (Pender, 1996). The friends’ loss of vision might have initially promoted depression, frustration, withdrawal from life, interpersonal isolation, and loss of personal control. They might still feel waves of the above. However, they had each other now and the group as a whole for support. They could,

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therefore, take the next steps to identify themselves, redefine themselves, and characterize themselves within their blindness.

CONCLUSION The findings of this qualitative study was a small, circumscribed seventy-minute conversation with nine blind older adult friends and cannot be generalized to other older adult populations. Applications to other populations must be done cautiously. As an exploratory strategy, this methodology might be thought to be limited since the conversation belongs to the participants and the researcher does not facilitate the conversation. This study does, however, provide support for the therapeutic potential of using talk in conversations among participants to gain greater understanding of social phenomena and information about the relationships among the participants.

Blindness… •

• •

• • • •

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• • • •



Blindness, especially late onset blindness, where a person has had the ability to see at one time in their lives, strongly impacts the person. They feel initial shock and desperation. Participating in groups with others having the same condition helps them deal more effectively with blindness. A person dealing with late onset blindness might experience waves of sorrow when they reminisce about the past and realize the disparity between what they could do then and now. Having people to talk to who understand the ongoing grief is very helpful in healing. Although grieving continues, people can get to the point where they realize things won’t be the same and they, instead focus on the things they can accomplish. Laughter is important to healing and growing together in a conversation with older adult friends. When older adult friends talk together they will accept playfulness, teasing, joking, and laughing together regardless of race. Older adult friends can feel comfortable, respectfully and politely disagreeing with one another, putting a priority on maintaining interpersonal relationships. Older adult friends strive for interconnectedness, yet they also strive to maintain some independence. Many older adults, including those who are visually impaired, value accountability and independence. Others are comfortable being more passive and dependent. Older adult blind friends use their talk as a force of action to instill hope, to unify, to give information, and to provide help and support to others thereby helping themselves to learn to deal more effectively with blindness. The blind talking together gives them power to cope with blindness.

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Implications for Healthcare Providers …

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When working with blind older adults, healthcare providers might consider the following: 1. Blind older adults can be active, independent participants and partners in their care. 2. Blind clients who participate in groups with others who are also blind learn to deal more effectively with blindness. There is power in talk support groups and that talk is also action. 3. Blind clients who have the opportunity to talk with peers and healthcare providers who understand chronic sorrow or ongoing grief is very helpful in healing. 4. Listening carefully to the talk of older adults, blind or sighted is vital. 5. Putting aside preconceived notions and stereotypes about sexual inactivity in older adults is important. Health evaluations should include sexual health assessment, sexual health education, and as necessary sexual health counseling and treatment. 6. In preparation to work with the blind empathy might be enhanced if healthcare providers experience the effect of closing their eyes when talking to others. This might be an “eye-opening experience.” The provider might not be acknowledged when trying to speak and might have difficulty knowing when to jump into the conversation. They run the risk of interrupting or overlapping another person’s discourse. They might feel frustrated, lonely, and embarrassed. 7. A person dealing with an ongoing disability such as late onset blindness will experience waves of chronic sorrow and the provider should expect periodic reoccurrences of grief-related feelings and be prepared to provide anticipatory guidance around situations that trigger the sorrow. 8. Healthcare providers should be aware that patients experiencing chronic sorrow have a need to talk about their loss in an environment that gives them a sense of safety and comfort. Therefore, healthcare providers who demonstrate an empathetic and caring presence should: • Listen to them actively and offer support and empathy. • Assist them to develop action-oriented strategies related to their blindness that enhances feelings of control. • Encourage them to maintain their involvement in personal interests and in activities that they have been involved with in the past. • Encourage them to learn and teach them about the illness, about loss and about chronic sorrow. • Encourage them to concentrate on the positive aspects of one's life. • Encourage participation in groups such as the social gathering where people can talk with others involved in the same or a similar loss situation, talk individually with someone close, or talk with a trusted professional.

CONCLUDING SUMMARY Although a discussion of the friends’ blindness had not been identified as a learning objective, content related to the chronicity of living without sight every minute of everyday

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was pervasive and permeated the conversation. For at least eight of the nine friends there was a disparity between what they could do when they were sighted and what they could no longer do since becoming blind. Just as the group is more than and different from the participating individuals, the conversation and what the friends’ said and how they said it was more than and different from only the content of the words. Interpersonal attachment intensified as the friends talked together. The level of emotional involvement among the friends continuously developed. Each of the friends seemed genuine in their support and concern, and for the most part, forthright in their disagreements. This was especially evident in the discourse of two AfricanAmerican friends, Betrice and Ruby, and in Syndy, the Trinidadian-American friend. The level of trust they obviously shared was substantial enough for them to be comfortable in their discussion of sensitive issues. Talk about their blindness evolved spontaneously. Blindness was the topic the friends spent the most time discussing. During the conversation, the friends intervened to assist a relatively new member who was in great need. This underscored the friends’ relationships as interpersonally involved. Each friend became actively engaged with their troubled new friend and they talked with caring empathy using action strategies and at appropriate times, laughter. Of course these friends shared a common bond. Over and above their older adult age status with its concomitant life experiences, was the bond of their visual impairment. Their blindness was undeniably the force that bound them together. There was a musical rhythm to their speech. Laughter was plentiful occurring one hundred and five times. Stories were told with detail and imagery. Certain members excelled at constructing dialogue, making the listener feel they were there witnessing the event. Various levels of accountability and responsibility were obvious during the conversation. The clear meta-message certain friends sent let it be known that they made their own decisions and choices in life and dealt with the consequences. The friends’ getting together to talk was “the event.” Their talk had created an ongoing, continuous social world and a unique culture. Their words had certain meanings within their culture and their words did things. The talk among friends was empowering; through it they reaffirmed old relationships and initiated new relationships; they gained greater understanding of one another; and they moved closer together. Talking together was a force that overpowered their disability. Through the talk the friends were given resources and support to live without sight. Their talking together became a visual assistance device, like the cane, a device for orientation and mobility through life. On a regular basis, their talk became a device for greater “insight.” They “saw” through each other’s eyes. Their eyes were opened to “see” more when they talked together. As they learned more about themselves, there was potential for growth and for dealing with their blindness with greater effectiveness. The friends had each other. Through their talk together that evening, they could move out of the darkness as individuals and into the light of the intimacy as friends. The conversation gave them the ability to deal with the many challenges and hardships of their blindness. They were in the same boat and although it might leak a bit, their boat was powered by the conversation. They were together on a journey toward health. I hope that you have been able to see and to hear through the words of these nine older adult blind friends what blindness means to them, how it drastically changed their lives in many ways for both the worse and the better, and how they endeavor as a group to empower

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themselves and to call upon their internal and external resources to enhance the resilience and strength they need to evolve as Syndy said just “like other people”.

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Horowitz, A., and Reinhardt, J. (1998). Psychosocial adjustment to vision impairment among elderly: Development of the Adaptation to Age-Related Vision Loss Scale. Journal of Visual Impairment and Blindness, 92, 30-41. Houde, S., Huff, M. (2003). Age-related vision loss in older adults: A challenge for gerontological nurses. Journal of Gerontological Nursing, 29 (4), 25-30. Janoff-Bulman, R. (1989). Assumptive worlds and the stress of traumatic events: Application of the schema construct. Social Cognition, 7(2), 113-136. Kleinschmidt, J.L., Trunnell, E. P, Reading, J. C., White, G. L., Richardson, G. E., and Edwards, M. E. (1995). The role of control in depression, anxiety, and life satisfaction among visually impaired older adults. Journal of Health Education, 26, 26-36. Kosberg, J., Kaufman, A.V., Burgio, L.D., Leeper, J.D., Sun, F. (2007) Family caregiving to those with dementia in rural Alabama: Racial similarities and differences. Journal of Aging and Health, 19(1), 3-21. Kwan, J. (2002). Almost home: Embracing the magical connection between positive humor and spirituality. South Carolina: Cameo Publications. Lakoff, R.T. (1990). Talking power: the politics of language in our lives. Basic Books. Lang, F. R. (2000). Endings and continuity of social relationships: Maximizing intrinsic benefits within personal networks when feeling near to death? Journal of Social and Personal Relationships, 17, 157-184. Lee, P.P., Smith, J.P., and Kington, R. S. (1999).The associations between self-rated vision and hearing and functional status in middle age. Ophthalmology, 106 (2), 401-405. McGhee, P. E. (1979). Humor: Its origin and development. San Francisco: Freeman. Moore, L., Constantino, R., and Allen, M. (2000) Severe visual impairment in older women. Western Journal of Nursing Research, 22, 571-595. Morse, J. M., and Carter, B. (1996). The essence of enduring and expressions of suffering. Scholarly Inquiry in Nursing Practice, 10(1), 43-74. Pender, N. (1996). Health promotion in nursing practice (3rd ed.).Stamford, Connecticut: Appleton and Lange. Reuben, D.B., Silbey, M., Damesyn, M., Moore, A.A., and Greendale, G.A. (1999).The prognostic value of sensory impairment in older persons. Journal of the American Geriatric Society, 47, 930-935. Robinson, L. (1981). Gerontological nursing research. In I. Burnside (Ed.). Nursing and the aged. (pp. 654-666). New York: McGraw-Hill Book Co. Rovner, B.W., and Ganguli, M. (1998). Depression and disability associated with impaired vision: the MOVIES project. Journal of the American Geriatric Society, 46, 617-619. Rowe, J. W., and Kahn, R. (1997). Successful aging. The Gerontologist, 37, 433-440. Rudberg, M. A., Furner, S. E., Dunn, J. E., and Cassel, C. K. (1993). The relationship of visual and hearing impairments to disability: An analysis using the Longitudinal Study of Aging. Journal of Gerontology: Medical Sciences, 48, M261-M267. Satir, V. (1988). The new peoplemaking. California: Science and Behavior Books, Inc. Schaefer, K.M. (1999). Women living in paradox: loss and discovery in chronic illness. Holistic Nursing Practice, 9, 63-74. Shaul, M.P. (1997).Transitions in chronic illness: rheumatoid arthritis in women. Rehabilitation Nursing, 22, 199-205.

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Schoenborn, C.A., Vickerie, J.L., and Powell-Griner, E. (2006). Health characteristics of adults 55 years of age and over: United States, 2000–2003. Advance Data from Vital and Health Statistics, 370, 1-32. Hyattsville, MD: National Center for Health Statistics. Solomon, J. (1996). Humor and aging well: a laughing matter or a matter of laughing? American Behavioral Scientist, 39, 249-272. Tannen, D. (1984). Conversational style: Analyzing talk among friends.Westport, Connecticut: Ablex Publishing. Tannen, D. (1989). Talking voices: Repetition, diologue, and imagery in conversational discourse. Cambridge: Cambridge Press. Wahl, H., Schilling, O., Oswald, F., and Heyl, V. (1999). Psychosocial consequences of agerelated visual impairment: Comparison with mobility-impaired older adults and longterm outcome. The Journals of Gerontology, 54B, 304-316. Weaver, L. (1999). Living with Macular degeneration: Creative strategies used by older women. Journal of Ophthalmic Nursing and Technology, 18 (5), 200-204. Weksler, M. (1998). Age-related macular degeneration: How science is improving clinical care. Geriatrics, 53, 70-80. Weisfield, G. (1993) The adaptive value of humor and laughter. Ethnology and Sociobiology, 14, 141-169. Yalom, I. D. (1995). The theory and practice of group psychotherapy (4th ed.). NY: Basic Books. Yoshida, K. K. (1993). Reshaping of self: A pendular reconstruction of self and identity among adults with traumatic spinal cord injury. Sociology of Health and Illness, 15(2), 217-245. Vereen, LG., Butler, S. K., Williams, FC., Darg, JA., Downing, TK.E. (2006). The use of humor when counseling African American college students. Journal of Counseling and Development. 84(1), 10-15.

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In: Black Women’s Health: Challenges and Opportunities ISBN 978-1-60876-453-2 Editor: Yvonne Wesley © 2009 Nova Science Publishers, Inc.

Chapter 10

RELATIONSHIPS AMONG PET ATTACHMENT SUPPORT AND HUMAN HEALTH OUTCOMES IN WOMEN OF COLOR Cheryl A. Krause-Parello ABSTRACT

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Pets and their relationship with humans affect human health. In some cultures pets are often seen as members of the family; however, this may not be true in all communities of color in the United States. The enhancement of human health is a fundamental focus in nursing practice and nurse researchers have an obligation to investigate the mechanisms that are associated with health so that through the evolution of this knowledge, evidence-based interventions can be designed and implemented. The utilization of pets as a supportive and coping resource is promising in the promotion of health in women of color. Moreover, research suggests that there are variations in pet attachment depending on ethnicity and cultural factors. The purpose of this chapter is to explore pet attachment and human health outcomes in women of color and ethnic variations in pet attachment. Implications for future research and public policy will be discussed.

DEDICATION ‘What is man without beasts? If all the beasts were gone, men would die from great loneliness of spirit, for whatever happens to the beast also happens to man. All things are connected. What ever befalls the earth befalls the sons of earth.’ Chief Sealth of the Duwamish Tribe, State of Washington, Letter to the President of the United States, 1885 (as cited in Rynearson, 1978).

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Cheryl A. Krause-Parello This chapter is dedicated to my dachshund, Samantha a.k.a .“Big Ma”

who has crossed the Rainbow Bridge.

INTRODUCTION

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The human-animal relationship has grown into a social context. Although not generalizable to all cultures, in the United States, the new conceptualized role of a pet is in the form of a significant attachment for many Americans. In addition, there is cultural heritage and culturally grounded behaviors and attitudes that shape one’s view of pets as part of the family. Pets and their relationship with humans affect health. Pets through pet attachment support can assist women of color who may lack human social support as a way of meeting those attachment support needs. Scientists in the field of pet and human health have yet to answer how a pet can be an integral part of individual’s lives by providing a form of social support and enhancing health outcomes (Krause-Parello, 2008a).

THEORETICAL UNDERPINNINGS In order to understand the concept pet attachment as it pertains to this work, we must first begin with the theoretical underpinnings of attachment relationships. There are many cultural and ethnic variations in attachment relationships. The theory of attachment is based on propositions relating to human- human attachment; as attachment is the emotional bond in a long lasting relationship (Bowlby, 1969). The work of Bowlby (1969) and Ainsworth (1967) in maternal infant bonding provides strong theoretical value for studying attachment relationships. The patterning of attachment behavior begins in infancy (Colin, 1996); and forming secure attachments in infancy is most adaptive for mental health across all cultures. Most of the attachment literature highlights the relationship between a baby and their mother. The maternal infant attachment is the main relationship discussed in the attachment

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literature (Bowlby, 1969 and Colin, 1996). However, social psychologists have discussed human attachments to tangible and non-tangible objects such as work supervisors, neighborhoods, and pets (Colin, 1996). Subsequent research has documented the positive health benefits of an attachment relationship between women and their pets (Krause-Parello, 2008b). Humans instinctively form attachments, and people and animals are significant attachments for each other (Rynearson, 1978). Bowlby (1973) explains that in order to understand human needs and human nature the key is to study affectional bonding in human and subhuman species (dogs, cats, birds, and others), and the provisions that accommodate or interrupt the development of a healthy capacity for bonding. Bowlby (1973) further posits that affectional bonds are created throughout all stages in our lives. These bonds are not a new announcement for animal lovers, in that among many species such as birds and mammals, strong bonds are created throughout the life span. Humans as well as many subspecies instinctually form attachments and it is this instinctive behavior that promotes survival of members of a species (Bowlby, 1969). The classic example in the literature of animal bonding between subhuman species is the young gosling. The young gosling’s instinctive behavior of attachment to another, which may even be of another kind, appears through visual and auditory stimuli (Bowlby, 1969). Another example of animal bonding between subhuman species is the instinctive behavior of the rat. The maternal attachment behavior of the rat includes three main components: nest building, nursing, and retrieving. These components include fulfilling the basic needs for the pups’ survival. The pups are instinctively nurtured by their mother until they are able to fend for themselves (Bowlby, 1969). Conversely, the rat fathers will manifest an instinctive paternal attachment to their offspring if they are confined in proximity to the newborn pups (Bowlby, 1969). In summary, theory supports that attachment is an instinctive behavior in human and subhuman species.

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LITERATURE REVIEW Although there are not many studies on pet attachment across culture groups, there appears to be cultural and ethnic variations in the relationship among women of color and pets. These differences among pet attachment reinforce that women of color respond to pets within the context of ethnic and cultural variations. However, there is evolving scientific literature across disciplines that speak to the benefits of the human-animal relationship, and improving overall human health and well being. Recently there has been an increase in research supporting the human-animal attachment relationship. These findings which are supported by empirical evidence, report that there are many benefits to having an attachment with a pet. In a qualitative study conducted by Nies, Vollman, and Cook (1999) black women, who participated in this study, revealed that pets were active facilitators of physical activity and exercise. According to the participants, the pets provided them with a sense of security, comfort, and companionship while exercising. This finding suggests that health promotion efforts in facilitating active lifestyles in African American women should consider including pets as exercise facilitators.

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Risley-Curtiss, Holley, Cruickshank, Porcelli, Rhoads, Bacchus et al. (2006) conducted a study to explore the women of color and their relationship with a companion animal. A multicultural feminist theoretical framework was used to guide this qualitative study. Many of the women explained that their pets were an integral part of the family and considered them a family member. The results supported that there is a reciprocal relationship which exists between women of color and companion animals. The findings suggest that the humananimal relationship transcends positively across many different cultures. In a recent study conducted by Krause-Parello (2008b) the relationship between loneliness and subjective health, as well the mediating effect of pet attachment support between loneliness and subjective health was examined in a sample of 159 communityresiding older females. The stress, coping, and adaptation theory posited by Lazarus and Folkman (1984) was the overall conceptual framework for this study. The significant results from this study supported that, in this sample, pet attachment support had a mediating effect on the relationship between loneliness and subjective health. The findings suggest that the benefits of human-animal interaction can include sense of purpose, feelings of self worth, and healthy interactions from the perspective of health in older females. In summary research continues to support the relationship between women and pets. However, cultural differences may exist and must be explored. Although there are cultural differences in the level of attachment with a pet, the benefits of this relationship in the enhancement of women’s health needs to be explored in future research.

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DEFINITIONS Pet has been defined as “any domesticated or tamed animal that is kept as a favorite and cared for affectionately” (The Random House Dictionary, 1968, p. 992). Although similar to the concept pet attachment it is necessary to differentiate the difference among pet attachment, pet companionship and pet ownership. Pet companionship, according to Rook (1990) may enhance psychological subjective well being via mechanisms of “recreation, humor, and affection” (p. 222) that is initiated for the goal of enjoyment. Conversely, Rook (1990) further explains that companionship and support are theoretically distinctive and posits that each embody different functions of an intimate relationship. Pet ownership as a concept is an individual possessing a pet with the absence of the bond, and the provision of social support. Pet attachment embodies relational provisions of social support such as attachment, nurturance, socially supportive relationship, reassurance of worth, a sense of reliable alliance, and obtaining a sense of guidance during stress. Pet attachment support, for the purpose of this work, is theoretically defined as a strong emotional and affectional relational bond between a specific human and a pet animal such as dog, cat, or bird.

HEALTH BENEFITS OF HUMAN-ANIMAL RELATIONSHIPS There are many benefits to having a relationship with an animal. The health benefits of human-animal relationships can be sorted into four categories: social, psychological,

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physiological, and behavioral factors. The following section will discuss each factor separately.

Social Factors The social factors and benefits of the human-animal relationship are well documented in the literature. According to Barba, Tesh, and Courts (2002) facilitating pet visitation programs in nursing homes support a healthier, more vibrant environment for the geriatric resident by increasing socialization and interactions with others. Research studies have supported the positive influence of animals on social interactions. Studies have shown the supportive functions of a pet in the social context of family (Barker and Barker 1988; Cohen, 2002). Cohen (2002) conducted an exploratory study in a large urban veterinary hospital to examine the role of pets in the family and how they compare to that of human family members. The research was conducted in two phases. In phase 1 the participants (N= 201) included seventy-five women, whose age ranged from 18-85 years. There were 73% nonLatino Caucasian participants, 3% African American, 5% Asian, and 12% Latino, and 7% did not specify. In phase 2, participants from phase 1 (N = 16) were equally divided by gender, and educational level. The results of the study supported that pets are functioning members of the family.

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Psychological Factors The second category is the psychological component of pets and their relationship with human counterparts. Pets have been used in psychology as adjunctive therapy in the treatment of depressed and lonely patients (Levinson, 1969). Pet presence within a hospice setting has supported a relaxing and comforting effect for the dying (Chinner and Dalziel, 1991). McCabe, Baun, Speich, and Agrawl (2002) conducted a study to examine the effect of a resident dog on problem behaviors of a person with Alzheimer’s disease. The participants were recruited from an Alzheimer’s special care unit of an urban extended facility in a Midwestern state. There were 22 residents of which 15 were female and 7 were male, their age ranged from 68-96 years. There were twenty Caucasian residents, 1 Hispanic, and 1 African American. The results of the study supported that the presence of the resident dog lessened the frequency of behavioral disturbances during the daytime. The findings supported the therapeutic use of a resident dog for individuals with Alzheimer’s disease.

Physiological Factors The third category is the physiological component of pets and their relationship with human counterparts. Study outcomes have reported a decrease in the blood pressure of people interacting with pets (Friedmann, Katcher, Thomas, Lynch, and Messent, 1983; Jenning, Reid, Christy, Jennings, Anderson, and Dart, 1998).

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Freidman, Katcher, Thomas, Lynch, and Messent (1983) conducted an experiment to examine the effect of the presence of an animal on children’s blood pressure and heart rate. The participants (N = 38) ages ranged from 9 to 16 years. The children’s blood pressure and heart rate were recorded in the presence of a pet, resting, and while reading. The statistically significant results supported that the presence of a pet lowered blood pressure and heart rate in this sample of children. A study conducted by Edwards and Beck (2002) examined the relationship of animal assisted-therapy and nutritional intake in patients with Alzheimer’s disease. The sample (N = 62) included 24 males and 38 females of which 98.5 % were White and 1.5% was African American. The mean age of the sample was 80.1 years. Baseline data was obtained such as body weight and nutritional intake. The treatment group was introduced to an aquarium that housed colorful fish that was located in the activity and dining room compared to the control treatment group that was introduced to a scenic ocean picture. The results of the study supported a statistically significant increase in nutritional intake (21.1%; p < .001) when the aquarium was introduced to the participants. According to the researchers the influence of animal-assisted therapy increased the nutritional intake of patients with Alzheimer’s disease thereby, reducing the need for supplemental additives to patient’s diets resulting in a reduction of health care cost.

Emotional Factors The fourth category is the emotional component of pets and their relationship with human counterparts. Pets, to some, symbolize companionship. According to Connor and Miller (2000) pets serve in many aspects of human life, providing companionship, assistance of various degrees, and affection. Interactions with pets have a positive effect on the emotional element of rehabilitation for patients (Twiname, 1984). According to Fontaine, Briggs, and Pope-Smith (2001) pets can enhance mood and decrease feeling of loneliness. Pets have also been reported ‘therapeutic’ for patients in critical care settings with outcomes such as reducing the feeling of loneliness, isolation, boredom, and depression (Martin, 1993).

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ETHNIC AND CULTURAL VARIATIONS IN PET ATTACHMENT There are cultural influences on adulthood and a culture emphasis on how pets are viewed among women of color. There are known transcultural differences in relation to pet attachment in the current literature. Ethnic and cultural differences can expand the humananimal relationship or diminish this relationship. Therefore it is important to understand variations in pet attachment based on cultural beliefs.

African Decent According to Jones (1999) traditionally people of African descent thought of animals as possessions that were acquired to serve. Dogs in particular were acquired and purchased

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mostly for security reasons or for hunting purposes. Today in the United States more people of African descent are acquiring pets as a form of companionship. In a recent study conducted by Brown (2002) ethnic variations in pet attachment were examined in college students. The results supported that White students were significantly more attached to their pets when compared to Black students. In addition, the findings supported that White students were also more likely to have pets and allowed the pet to sleep in their bed when compared to black students. The researcher provided some possible substantive explanations for these findings. According to Brown, the African-Americananimal relationship is influenced by folk tales that have been passed down through the generations. These tales often highlight that animals living in the African forests are aggressive and ferocious, which may account for the decrease in pet attachment. In a review of the research conducted by Brown (2002), the Journal of Blacks in Higher Education (JBHE; 2003) further provided some alternate explanations for Brown’s findings. These further explanations included that a disproportionate percentage of the AfricanAmericans live in inner cites and most likely live in apartment type housing units which may have little space for a pet. Another possible explanation posted is that the canine may be purchased as guard dogs not as a pet. Lastly, another alternative explanation provided in JBHE included that people of African descent may chose not to become attached to a pet due to a possible past experiences of having to give up a pet due to financial reasons.

Indian Decent Historically in India the maharajas (kings) would plan lavish weddings for their dogs, which included a baraat (wedding procession) and the red carpet (Melwani, 2003). In keeping with Hindu ritual the dogs were married only on Sundays. This type of ceremony suggests that the dogs in India were treated like royalty. However, Indians living in the United States are less likely to own a pet when compared to families living in India (Melwani, 2003). According to Melwani (2003) first generation Indian Americans are not as enthusiastic in owning a pet when compared to the second generation. The second generation of Indian Americans is suggested to be more pet friendly and for the most part will purchase small lap dogs and cats as pets (Melwani, 2003).

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Muslims Pets in the United States are often seen as members of the family; however in many Muslim countries this not necessary the case. For example, in the Islamic religion dogs in particular are seen as “dirty” (Al-Fayez, Awadalla, Templer, and Arikawa, 2003). Additionally many Muslims who follow the Islamic tradition choose to keep their homes dogfree (Nasrullah, 2007). Many people who live in “Western” countries embrace the emotional value and reciprocal attachment relationship with a pet. In contrast, to the Muslim world, animals are seen as more of trade and industry than an emotional significance (Al-Fayez, Awadalla, Templer, and Arikawa, 2003). However, it must be noted that having a companion animal is not forbidden in Islam (Al-Fayez, Awadalla, Templer, and Arikawa 2003). Moreover, Muslims who have pets are devoted pet owners. There are specific Islamic guidelines for pet care taking, according to Nasrullah (2007) one of which is kindness.

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Additionally, there are particular conditions for pet ownership: 1) the pet must be a permissible animal; 2) the pet cannot be a dangerous animal to humans; and 3) the pet must be well cared for (Nasrullah, 2007). According to Islamic ideology, having a dog as a pet is prohibited in Islam and reviled by many Muslims. The explanation for the prohibited animal is that it is believed that the canine’s salvia is impure. The cat however is seen by Muslims as a beloved pet (Nasrullah, 2007), and felines are considered a part of the family in Muslim tradition.

Asian Descent In Asia, pet ownership has increased dramatically over recent years (Yang, 2005). In China, the wealthy pay up to five times the annual income of the average rural Chinese for a pet. In Japan, there are approximately 19 million pet dogs and cats when compared to the 17.8 million children under the age of 15 (Yang, 2005). Yang further reports that in Japan the citizens are now using pets for that needed attachment relationship. A Chinese saying from the era of Deng Xiaoping suggests that the three marks of “true prosperity" are owning a home, driving a car, and having a pet dog (Yang, 2005). The increase in Asian dog ownership supports the Western notion that an attachment to a pet is an increasing phenomenon. However, dogs in China, Southeast Asia, and Korea are also considered a delicacy and a culinary delight according to Wong (1995). However, despite the cultural practice in the eastern world many Asians living in America dispute that eating dogs is not part of their culture (Wong, 1995). As China continues to become more Americanized, the latest status symbol among China’s emerging middle and upper classes is having a dog as a pet (Le, 2006).

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Hispanic Decent A recent research study conducted by Johnson and Meadows (2002) examined Latino pet owners and their relationship with their pet. There were 20 females and 4 males who participated in this study. The findings supported that 67 % of the participants see their dog as member of the family, 58% state that they would be lonely without their dog, and 67% see their dog as their best friend. Latinos are known for the strong family bonds (Johnson and Meadows, 2002), and the results of this study suggest that the pet dog is considered as a member of the family. The findings further suggest that a positive relationship exists between Latinos and their pets.

INDIVIDUAL PERSONAL ACCOUNTS OF PET ATTACHMENT AND CULTURAL DIVERSITY Personal accounts and storytelling can provide rich content to describe the pet attachment relationship across different cultures. The following pieces are individual accounts in their own words from women of color on their pet attachment relationship.

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Susan Richardson-Murray’s Pet Attachment to Cocoa

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Figure 1. Picture of Susan Richardson-Murray and Cocoa.

My love for Cocoa (my canine) comes as a big surprise for me, and those close to me. As an African-American woman I was raised to believe canines were good watch dogs, and they would alert you if someone was approaching the home, good and their living quarters were always out side the home in the “dog house”. As a child my introduction to dogs was informal. My grand parents had a dog named “Pup”, who lived in a makeshift dog house, and I remember my grand mother feeding pup table scraps (any food left over from our meals). However, pup gave me the scare of my life after startling me one day by growling, barking furiously at me showing his sharp teeth; and chasing me around in the yard with a vengeance ( I now believe Pup was jealous of me). What I didn’t know at that time was to never run from the dog and attempt to stand my ground (by giving demands to either stay or sit etc.). That began my fear of dogs; also associated with the fear was the cultural and ethnic beliefs that dogs were used as a way to threaten or harm ones person (my grandparents beliefs), and by history of the state I lived in (Alabama). So, for the next forty something years I held a fear for dogs based on my childhood. As I got older, there was a need for me to confront my fear of dogs (embedded over the years). My husband had a dog as a child; but as an adult he was adamant not to bring a dog into our home. Further discussion with my husband about why he was adamant about not having a dog in our home revealed that as a child he was the sole caregiver of his family’s dog (Blazer). There were several responsibilities of caring for Blazer which included, feeding, bathroom training, social skills, and cleaning up after the dog. Mentally that was challenging to my spouse, because of all sole responsibilities. Blazer was with the family for thirteen years, until he was found hanging by his own chain in the yard dead. He went on to explain that he did not feel sad about Blazer. I asked why but he did

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not give me a clear answer instead; refusing to have another dog until Cocoa came along. My husband and I loss our first and only child at birth and we have remained childless since that (no choice of ours); so when Cocoa came into our lives it was like bringing home a newborn child (although I know she is a canine). Cocoa is my first dog as an adult and I venture to say I treat her as if she my first child (see figure 1). Everyone says she’s spoiled, I don’t think so. Cocoa has become a partner and a friend that always listens and never criticizes (smile). My husband, I believe has fallen in love with her (although he tries not to show it). I guess you can say she has become our child (oops, I mean pet).

Shefali Kumar’s Pet Attachment to Misty

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Dogs are present in every culture of the world, representing something different, serving a different purpose. In the Indian tradition, dogs serve two main purposes: protection and entertainment. The dog, for its owners, is the guard of the house, barking at strangers and warning the household of any danger. Indians are aware that during a crisis, canines have the instinct of alerting their masters with loud barks and exaggerated movements. For example, if there is a fire in a particular room in the house and the dog becomes aware of it, he or she will howl incessantly. Also, if there is an intruder in the house during the middle of the night, the dog will awake and snarl and growl noisily at the person to alert the owner of the house. After all, a dog is man’s best friend. Besides this obviously useful purpose of a dog, these pets are also kept around in order to occupy guests and more importantly, the children of the household. Dogs that are included in an Indian family enjoy activity – from playing Frisbee and catch to chasing adults and interacting with children. It is said that the dog was created especially for children for he is the God of frolic. Dogs in the Indian culture are not sheltered for companionship because in India, people are constantly surrounded by family and friends and are rarely lonely. Thus, dogs serve the purpose of familial security and child amusement. Growing up in India, I was surrounded by all sorts of dogs –young dogs, old dogs, light dogs, dark dogs, fat dogs, and malnourished dogs. My family and the ones around us each owned dogs. As a child, my family had a Golden retriever, a very energetic, yet responsible puppy – a perfect match for what most Indians believe is important in a pet. Now, I own my own dog, a Vizsla named Misty (See Figure 2). Misty is everything that is important to me – she is friendly, interactive with my children, and is very smart. She plays a significant role in our family.

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Breed: Vizsla Loved Since: 2005 Family: Kumar Figure 2. Pictures of Shefali Kumar and Misty.

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Genny Puente-Mazo’s Pet Attachment to KC and Ginger Although keeping pets is a universal cultural phenomenon, how that attachment is expressed may vary from culture-to-culture. I am Columbian and within my culture many years ago some pets were trained to be the house guardians and not as a personal companion. However, this trend has changed and at the present time many households now have pets as companions. From the moment that KC arrived to my home, she turned into my companion and my little watch dog. Around the summer of 1993, while I was taking my lunch I saw a pure breed Shitzu completely lost, thirsty and hungry. I offered her something to eat and with caution she accepted what it was offered. To my surprise on the following day she was again in the same place. It looked like she was waiting for me to come. Later, at the end of my work day I went back to the site hoping to find her again and with the idea of taking her to my house. KC was one of so many pets left abandoned by their careless and heartless owners. She didn’t have a name tag or something that would identify her owner, and after doing some inquiries around I took her with me. KC was extremely intelligent, affectionate and responsive. She was also very possessive and caring of my surroundings and belongings. With the exception of the kids, she was loved by all my relatives, and friends. She was my first pet in this country and I felt very good about having her. There was a big difference between being a child and having a pet which I was not allowed to touch or play with being an adult and able to play and actually dedicate time for caring my pet. KC was very special to me not only she was my companion but she was

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my therapy during those critical days when I was not feeling good due to my Rheumatoid Arthritis illness. For five years KC was the queen and joy of my house. She enjoyed the privileges of a loved pet. Unfortunately, one day my house was assaulted and vandalized during my absence and in an attempt to protect my house KC was badly hurt by the intruder and she lost her life. For several months I felt heartbroken and grieved her loss and realized how attached I had become to my pet. I was silently mourning her loss and my family not willingly to see me in distress they got together and gave what I have called now as a joke “my second edition” (Smile….). Her name is Ginger and she looks a little bit like KC. Ginger is now 91/2 years (See Figure 3). She is the joy and the girl of the house; somehow she comes to fill the gap of not being able to have children. Nevertheless, I would never forget my beloved KC, and she will always be remembered as my courageous little hero.

IMPLICATIONS FOR NURSING PRACTICE AND PUBLIC POLICY

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Companion animals are now considered a family member in many cultures; and nurses must work towards incorporating them into total patient care. Attachment relationships can be found in many different forms, and nurses have an obligation to assess attachment relationships in women of color. Pets are a source of attachment and social support and should be utilized to enhance women’s health. As part of the initial nursing assessment, an appraisal of supportive networks should be reviewed. Pets, as part of the intake assessment, should be examined including the existence of a pet and the extent of the pet attachment. Having self-reported information from the client will provide nurses with a clear direction in advocating for interdisciplinary support services that include the pet such as occupational therapy, social work, and case management.

Figure 3. Genny Puente-Mazo and Ginger.

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Figure 4. Author: Cheryl Krause-Parello’s dachshund rescue pups Daisy (left) and Cassie (right).

There are implications for public policy to support the use of pets as an alternative and easily accessible coping mechanism (Krause-Parello, 2008a; Krause-Parello, 2008b). Specifically, the changes or alterations in public policies can include: allowing animals in public and private housing complexes, community centers, public places, rehabilitation centers, hospitals, nursing homes, and long-term care facilitates (Krause-Parello, 2008a; Krause-Parello, 2008b). Since the human-animal relationship is supported in the literature to have health benefits for individuals, it stands to reason that pets are an easy and accessible alternative as health promotion and disease prevention intervention. Reimbursement or monetary credits from governmental sources and health insurance companies for pet care is an area that should be explored. This may be especially significant for individuals on fixed incomes as well as for individuals with acute or chronic health conditions. Advocating for household pets has an individual as well as societal benefit as discussed in the current literature. Individuals who have an attachment relationship with a pet may have a decrease in hospitalizations, physician visits, and become less dependent on medications or additive diet supplements. Currently, a number of hospitals have policies in place that support pet visits. Pets may encourage exercise and should be included as a facilitator when developing exercise regimes for individuals. Since the enhancement of well being is a central focus in nursing practice, nursing seeks to comprehend and lessen the symptoms of chronic health conditions, and to discover useful ways to maintain positive health and well being. Continuing advances in our quest for pathways by which social supportive resources affect mental and physical health are essential so that nurse scientists can design interventions that will ultimately promote well being. In summary, women are products of their ethnic framework, however as shown in this chapter women of color experience pet attachment. Furthermore, the literature supports that pets help improve health and the health care environment acknowledges the values of pets.

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Therefore, nursing research needs to be conducted to examine whether the utilization of pets as a complementary therapy varies within and between women of color.

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REFERENCES Ainsworth, M. D. S. (1989). Attachments beyond infancy. American Psychologist, 44, (4), 709-716. Al-Fayez, G., Awadalla, A., Templer, D. I., and Arikawa, H. (2003). Companion Animal Attitude and its Family Pattern in Kuwait. Society and Animals 11(1), 17-28. Barba, B. E., Tesh, A.S., and Courts, N. F. (2002). Promoting thriving in nursing homes: The Eden alternative. Journal of Gerontological Nursing, March, 7-13. Barker, S. B., and Barker, R. T. (1988). The human-canine bond: Closer than family ties? Journal of Mental Health Counseling, 10, 46-56. Bowlby, J. (1969). Attachment (2nd ed.). New York: Basic Books. Bowlby, J. (1973). Affectional bonds: Their nature and origin. In R. Weiss (Ed.), Loneliness: The experience of emotional and social isolation (pp. 38-52). Cambridge, MA: The MIT Press. Brown, S. (2002). Ethnic Variation in pet attachment among students at an American School of Veterinary Medicine. Society and Animals, 10(3), 269-266. Chinner, T. L., and Dalziel, F. R. (1991). An exploratory study on the viability and efficacy of a pet-facilitated therapy project within hospice. Journal of Palliative Care, 7, 13-20. Cohen, S. P. (2002). Can pets function as family member? Western Journal of Nursing Research, 24(6), 621-638. Colin, V. (1996). Human attachment. New York: McGraw-Hill. Connor, K., and Miller, J. (2000). Animal-assisted therapy: An in-depth look. Dimensions of Critical Care Nursing, 19, 20-26. Edwards, N. E., and Beck, A. M. (2002). Animal-assisted therapy and nutrition in Alzheimer’s disease. Western Journal of Nursing Research, 24(6), 697-712. Fontaine, D. K., Briggs, L. P., and Pope-Smith, B. (2001). Designing humanistic critical care environments. Critical Care Nursing Quarterly, 24(3), 21-34. Friedman, E., Katcher, A. H., Thomas, S. A., Lynch, J.J., and Messent, P. R. (1983). Social Interactions and blood pressure. The Journal of Nervous and Mental Disease, 171(8), 461-465. Jenning, G. L. R., Reid, C. M., Christy, I., Jennings, J. , Anderson, W. P. Dart, A. (1998). Animals and cardiovascular health. . In C. C. Wilson and D. C. Turner (Eds.), Companion animals in human health (pp.161- 171). Thousand Oaks: SAGE Publications. JOBHE (2003, April 30). News and views: African-American college students show less attachment to their pets than white college students. The Journal of Blacks in Higher Education, 39, 58. Johnson, R. A. and Meadow, R. L. (2002). Older Latinos, pets, and health. Western Journal of Nursing Research, 24(6), 609-620. Jones, R. (1999, October 8). African-Americans spending more on their pets. Philadelphia Tribune, 115 (95), pp. 2B.

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Krause-Parello, C. A. (2008a). Pet attachment support: What are the relationships among loneliness, social support, and subjective well being in older adults? Germany: VDM Verlag. Krause-Parello, C. A. (2008b). The mediating effect of pet attachment support between loneliness and general health in older females living in the community. Journal of Community Health Nursing, 25(1), 1-14. Le, C. N. (2008). Latest Trend in China: Dogs as Pets" Asian-Nation: The Landscape of Asian America. Retrieved July 5, 2008 from http://www.asiannation.org/headlines/2006/11/ latest-trend-in-china-dogs-as-pets/ Levinson, B. M. (1969). Pet-oriented child psychotherapy. Springfield: Charles C. Thomas. McCabe, B. W., Baun, M. M., Speich, D., and Agrawal, S. (2002). Resident dog in the Alzheimer’s special care unit. Western Journal of Nursing Research, 26, 657-670. Melwani, L. (2003, February). No pets please; We’re Indian. Little India. Reading, 1(2), 63. Miller, J., and Ingram, L. (2002). Perioperative nursing and animal-assisted therapy. AORN Journal, 72(3), 477-483. Nies, M. A., Vollman, M., and Cook, T. (1999). African American women’s experiences with physical activity in their daily lives. Public Health Nursing, 16(1), 23–31. Rasrullah, R. (2007). Pets and Muslims. Azizah. Atlanta, 4(4), 106-110. Risley-Curtiss, C., Holley, L. C., Cruickshank, T., Porcelli, J., Rhoads, C., Bacchus, D. N. A. et al., (2006). “She was family” Women of color and human-animal connections. Journal of Women and Social Work, 21(4), 433-447. Risley-Curtiss, C., Holley, L. C., and Wolk, S. (2006). The animal-human bond and ethnic diversity. Social Work, 51(3), 257-268. Rook, K. S. (1990). Social relationships as a source of companionship: Implications for older adults’ psychological well being. In B. R. Sarason, I. G. Sarason, and G. R. Pierce. (Eds.), Social support: An interactional view (pp. 219- 250). New York: John Wiley and Sons, Inc. Rynearson, E. K. (1978). Human and pets and attachment. British Journal of Psychiatry, 133, 550-555. The Random House dictionary of the English language (College edition). (1968). New York: Random House. Twiname, B. G. (1985). Viewpoint. Rehabilitation Nursing, November-December, 34-35. Wong, D (1995, March). How delicious is that doggy in the window? Asians and their furry friends. Yolk. Alhambra, 2(1), 10. Yang, J. (2005). ASIAN POP Putting On The Dog Thursday, October 13, 2005 Retrieved July 4, 2008 from http://www.sfgate.com/cgi-bin/article.cgi?f=/g/a/2005/10/13/apop.DTL.

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INDEX

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A AARP, ix, 115, 120, 127 abnormalities, 140 abortion, 64 abstinence, 119, 127 academics, 24 accessibility, 58 accidents, 213 accountability, 156, 236, 238 accounting, 32, 81 ACE inhibitors, 85 achievement, 102, 105, 155 ACR, 171 ACS, 54 ACTH, 202 activism, 99 activity level, 111 activity theory, 101, 113 acupuncture, 121 acute, 7, 83, 84, 93, 191, 199, 255 acute stress, 191, 199 ADA, 74, 82 adaptability, 105 adaptation, 69, 93, 103, 105, 106, 189, 191, 205, 246 additives, 248 adjunctive therapy, 247 adjustment, 103, 105, 149, 213, 240 administrative, 4 administrators, 44 adrenocorticotropic hormone, 202 adult, x, 87, 89, 101, 112, 207, 208, 210, 211, 213, 214, 229, 236, 238, 251, 253 adult population, 236 adulthood, 248 adults, viii, ix, xi, 7, 80, 87, 88, 93, 97, 98, 100, 101, 109, 110, 113, 114, 115, 120, 127, 128, 207, 210,

211, 212, 213, 214, 235, 236, 237, 240, 241, 252, 257 advertisements, 196 advocacy, 3, 8, 9, 28, 29, 38, 49, 90, 111, 185, 203 Africa, 60, 62, 64, 192 African culture, 131 age, viii, ix, 7, 19, 30, 45, 70, 71, 80, 81, 83, 84, 87, 88, 97, 98, 99, 100, 101, 102, 103, 108, 115, 116, 119, 120, 123, 133, 134, 142, 149, 190, 191, 195, 200, 201, 205, 209, 210, 211, 212, 214, 226, 227, 228, 238, 239, 240, 241, 247, 248, 250 age related macular degeneration, 212 agent, 117, 123, 125, 126, 127, 152 agents, 42, 125, 205 age-related macular degeneration, 209, 212, 239 aging, 81, 87, 91, 99, 100, 101, 102, 103, 107, 108, 109, 110, 111, 112, 113, 114, 210, 212, 240, 241 aging population, 103, 109 aging process, 99, 100, 101 aid, vii, 29, 31, 33, 35, 49, 100, 189 AIDS, 5, 7, 85 alcohol, 69, 74, 107, 195, 220 alcohol use, 195 ALL, 226 allele, 58 allies, 36 alpha, 160, 161, 199 alternative, vii, ix, 1, 26, 27, 30, 40, 48, 106, 115, 118, 120, 121, 127, 128, 129, 249, 255, 256 alternative medicine, ix, 115, 118, 120, 121, 127, 128, 129 alternatives, 8, 40, 106, 118 altruism, 208, 234 ambivalent, 149 ambulance, 22 amendments, 173 American Cancer Society, 83, 93

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260

Index

American Community Survey, 96 American culture, 131, 163 American Psychiatric Association, 148, 150, 151, 179 American Psychological Association, 148, 151, 179 Americans with Disabilities Act, 74, 82 amplitude, 211 anemia, 64, 65 Anemia, 64, 65, 66, 67 angiography, 85 angioplasty, 85 Anglo-Saxon, 60 animals, 245, 246, 247, 248, 249, 254, 255, 256 anthropological, ix, 147, 155, 156, 185, 239 antibiotics, 65 antidepressant, 152, 167 antidepressants, 120 Antiretroviral, 94 anxiety, 149, 151, 152, 153, 154, 163, 165, 185, 194, 205, 211, 214, 229, 240 APA, 148, 150, 151, 179 apartheid, 77 appendectomy, 63 appetite, 151 application, 8, 15, 20, 35, 38, 44, 63, 67 argument, 10, 26 Armed Forces, 66 arousal, 229 artery, 7 arthritis, 94, 119 Asia, 250 Asian, 24, 124, 247, 250, 257 aspirin, 7, 85, 120 assessment, 30, 64, 108, 157, 161, 164, 167, 168, 172, 182, 210, 237, 254 assessment tools, 30 assets, 41 assimilation, 58, 60 assumptions, 17, 22, 24, 31, 36, 45, 134 asthma, 199 astronomy, 60 asylum, 149 atherosclerosis, 85, 95 attachment, xi, 134, 151, 233, 238, 243, 244, 245, 246, 248, 249, 250, 253, 254, 255, 256, 257 attacks, 7, 85, 151 attitudes, viii, 40, 41, 42, 57, 59, 64, 72, 76, 84, 91, 109, 124, 125, 132, 133, 158, 205, 244 auditory stimuli, 245 authenticity, 123, 125, 126 authority, 38, 69, 118 autonomy, 89, 110, 213 autosomal recessive, 61

avoidance, 106, 120, 151 awareness, 44, 64, 87, 91, 155, 169, 171, 181

B babies, 165, 202 backlash, 9 bacterial, 204 bad day, 213 baking, 235 barrier, 166, 167 barriers, 6, 73, 81, 82, 83, 84, 85, 86, 107, 123, 125, 165, 166, 171, 193, 229 basic needs, 100, 245 BDI, 159, 160, 161 Beck Depression Inventory, 159, 161, 179 beef, 70 behavior, 14, 16, 17, 32, 72, 82, 103, 104, 105, 106, 111, 114, 118, 123, 127, 128, 131, 132, 133, 144, 151, 156, 183, 192, 210, 211, 220, 229, 244, 245 behavioral sciences, 132, 181 belief systems, 203 beliefs, ix, 11, 36, 41, 42, 100, 109, 115, 116, 117, 118, 123, 124, 125, 126, 127, 131, 132, 133, 135, 143, 145, 158, 163, 164, 165, 194, 228, 248, 251 bell, 188, 193 benefits, 8, 48, 62, 64, 68, 72, 88, 101, 170, 172, 176, 196, 197, 240, 245, 246, 247, 255 benign, 106 bereavement, 109 beta-blockers, 7, 85 bias, 5, 7, 11, 14, 16, 20, 22, 44, 84, 87, 164 biochemistry, 149 bioethics, 64, 76 biological control, 76 biological markers, 204 biomarkers, 76, 191 biomedical model, 13, 100, 153, 154 biomonitoring, 71 bipartisan, 173 bipolar, 171 bipolar disease, 171 birds, 245 birth, x, 4, 22, 39, 61, 62, 63, 64, 149, 150, 151, 152, 153, 154, 157, 165, 167, 171, 174, 175, 182, 183, 187, 188, 189, 194, 195, 196, 198, 199, 200, 201, 202, 203, 204, 205, 252 birth center, 171 birth control, 4, 22, 63, 64 birth weight, 152, 195, 196, 199, 200, 201, 202, 203, 205 births, 62, 64, 152 Black students, 249

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Index black women, 111, 144, 145, 245 Blacks, 5, 7, 19, 26, 36, 61, 63, 64, 65, 75, 100, 102, 103, 108, 109, 110, 118, 124, 133, 192, 195, 196, 203, 249, 256 blame, 191, 202 blindness, x, 9, 10, 107, 207, 208, 209, 212, 213, 214, 215, 216, 217, 220, 221, 222, 223, 224, 225, 227, 228, 229, 230, 233, 234, 235, 236, 237, 238 blood, 61, 71, 85, 119, 120, 122, 137, 197, 212, 247, 248, 256 blood clot, 120 blood pressure, 119, 122, 247, 248, 256 blood vessels, 212 BMI, 7, 116 boats, 12 body image, 161 body language, 210 body mass index, 7, 116, 124 body weight, 137, 248 bonding, 151, 244, 245 bonds, 245, 250, 256 boredom, 248 bounds, 105 brain, 69, 74, 122, 149, 184 breast cancer, 6, 37, 38, 69, 70, 71, 72, 74, 75, 83, 86, 93, 95, 145 breast feeding, 152 breast milk, 152 breastfeeding, 152 breathing, ix, 115, 120, 151, 197, 198 breeding, 60, 63 Bureau of the Census, 87, 88 burn, 142 burning, 226, 227 buses, 210 bypass, 85

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C CAM, ix, 115, 116, 120 campaigns, 66, 166, 168, 169 cancer, ix, 7, 38, 69, 70, 72, 76, 77, 83, 115, 117, 124, 132, 143, 188 cancer care, 75, 76 cancer screening, 83, 124 cancer treatment, 95 carcinogenic, 71 cardiac catheterization, 7 cardiac risk, 85 cardiac risk factors, 85 cardiologist, 116 cardiovascular disease, 129, 188 care model, 127, 166, 168, 176

261

caregiver, 193, 251 caregivers, 89, 193, 230, 234 caregiving, 87, 88, 240 caretaker, 116 Caribbean, x, 109, 118, 123, 127, 207, 208 caricatures, 5 carrier, 58, 60, 66 case study, 76 cast, 163 cataracts, 212 categorization, 59, 69, 135 catheterization, 7 cats, 245, 249, 250 Caucasian, 46, 70, 76, 77, 80, 81, 83, 84, 89, 92, 94, 148, 152, 160, 209, 247 Caucasians, 81, 83, 84, 90 causal relationship, 14 CDC, 7, 39, 82, 93 cell, 65, 66, 69 Census, 4, 5, 7, 55, 80, 81, 87, 88, 93, 96, 98, 133 Census Bureau, 4, 7, 55, 80, 81, 96, 98 Centers for Disease Control, 7, 82, 93 Central America, 65 CEO, 175 certification, 121 cervical cancer, 96 CES, 162, 184 cesarean section, 118 chaos, 26 chemicals, 71 child abuse, 194 childbearing, 65, 68, 87, 149, 153, 163, 165, 183, 190 childbirth, 148, 149, 150, 151, 156, 158, 182, 198 childcare, 85, 152, 165, 198 childhood, 69, 162, 251 childless, 252 childrearing, 191 children, 22, 28, 41, 59, 61, 62, 63, 64, 65, 66, 68, 69, 71, 74, 76, 86, 87, 89, 107, 108, 116, 128, 148, 163, 171, 172, 179, 181, 191, 203, 223, 248, 250, 252, 254 China, 153, 250, 257 Chinese women, 148 cholesterol, 71, 85, 120, 124, 137 chronic disease, 81, 83 chronic illness, 107, 116, 203, 213, 240 chronic obstructive pulmonary disease, 190 chronic stress, 193, 198 chronically ill, 234, 239 cigarette smoking, 71 circulation, 212 citalopram, 152

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262

Index

citizens, 10, 36, 65, 66, 250 citizenship, 19 civil rights, 15, 24, 25, 37, 38, 53, 62, 63, 65 classes, 14, 18, 198, 250 classical, 126 classification, 12, 59 cleaning, 226, 227, 251 clients, 196, 197, 237 clinical disorders, 57 clinical presentation, 152 clinical trial, 38 clinician, 86, 150 clinics, 63, 64, 86, 196 close relationships, 133 clusters, 59 CNN, 166, 168, 181 coalitions, 13 cocoa, 71 cocoa butter, 71 coconut, 71 cognitive function, 105 cognitive impairment, 208 cognitive representations, 132 coherence, 188, 189, 190, 191, 202, 203, 230 cohesiveness, 234 cohort, 83, 108, 182, 185 collaboration, 39, 48, 91, 169, 171, 176 college students, 190, 230, 241, 249, 256 colleges, 121 collisions, 20 colonization, 17 color blindness, 9, 60 colorectal cancer, 85 Columbia University, 208, 210 combined effect, 28, 40, 83, 87, 89 Committee on Oversight and Government Reform, 93 communication, 38, 41, 49, 82, 86, 128, 165, 167, 230 communities, xi, 3, 9, 10, 11, 13, 18, 22, 23, 28, 67, 73, 87, 89, 91, 93, 99, 109, 118, 208, 214, 235, 243 community, viii, x, 9, 22, 23, 27, 28, 30, 36, 38, 39, 40, 41, 57, 58, 60, 65, 66, 67, 68, 69, 73, 75, 80, 81, 84, 87, 89, 90, 94, 99, 100, 101, 103, 109, 110, 113, 116, 117, 126, 133, 145, 166, 168, 172, 179, 183, 187, 189, 190, 193, 194, 196, 200, 203, 219, 246, 255, 257 community-based participatory research, 30 community-based participatory research (CBPR), 30 co-morbidities, 124 comparative research, 2, 45 compensation, 235, 239

competence, 11, 89, 91, 93, 117, 214 competency, ix, 11, 12, 131 competition, 9 complexity, 18, 29, 30, 44 compliance, 125 complications, 44, 84, 107, 152, 153, 202, 203, 233 components, 38, 106, 109, 111, 189, 190, 229, 245 composition, 44, 68, 144, 164 compounds, 102 comprehension, 189, 190 concentration, 151 conceptual model, 95 conceptualization, vii, 1, 2, 105, 108, 132, 154 conceptualizations, 106, 108 concrete, 9, 13, 81 confidence, 46, 117, 123, 156, 195, 200, 215, 216, 219, 225, 235 confidence interval, 195, 200 confidentiality, 66, 67, 74, 209 conflict, 22, 89, 105, 152, 194 confrontation, 234 confusion, 66 Congress, 22, 62, 65, 66, 67, 169, 170, 173, 174, 175 conjecture, 190 conjunctivitis, 212 consciousness, 26, 43, 50, 63, 64, 127, 163 consensus, 22, 82, 98 consent, 21, 68, 134, 196, 210 constituent groups, 3 constraints, 27, 44, 49, 68 construction, 10, 24, 42, 43, 56, 133, 159 consultants, 202 consumers, 91, 98 consumption, 124, 145 content analysis, 14 continuity, 100, 101, 103, 112, 240 control, 4, 22, 27, 38, 41, 42, 45, 63, 64, 72, 89, 105, 108, 109, 111, 118, 119, 122, 127, 135, 151, 163, 167, 183, 199, 200, 214, 237, 240, 248 control group, 168 cooking, 226, 227 COPD, 190 coping strategies, 40, 105, 106, 107, 108, 110, 112, 235, 239 coping strategy, 230 coronary artery disease, 7 coronary bypass surgery, 85 coronary heart disease, 85, 96 correlation, 71, 101, 127, 150, 200 correlation coefficient, 200 correlations, 200 corticotropin, 202, 204, 205 cortisol, 202

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Index cosmetics, 193 costs, 8, 13, 14, 73, 84, 88, 107, 127, 167, 172, 175 cotton, 212 counseling, 7, 65, 66, 67, 119, 163, 171, 197, 237, 241 country of origin, 196 couples, 65, 68 coupling, 26 courts, 22 covering, 28 craving, 142 creative thinking, 3 creativity, 105 CRH, 202 crime, 62 crimes, 108 criminals, 61, 62 criticism, 11, 24, 66 cross-cultural, x, 147, 153, 155, 158, 159, 166, 181, 182 cross-cultural comparison, 181 cross-sectional, 93 cross-sectional study, 93 CRT, 24, 25, 36 cues, 211, 229 cultural beliefs, 143, 158, 165, 248 cultural character, 37, 38 cultural differences, 11, 246, 248 cultural factors, xi, 155, 158, 165, 243 cultural heritage, 244 cultural influence, 248 cultural perspective, ix, 102, 131, 148, 184 cultural practices, 155 cultural values, 133 culture, 25, 26, 38, 41, 42, 43, 45, 49, 98, 111, 117, 132, 133, 145, 148, 149, 154, 155, 157, 158, 159, 162, 163, 164, 165, 179, 182, 190, 229, 235, 238, 245, 248, 250, 252, 253 currency, 29 current limit, 24 Current Population Survey, 4, 55 curriculum, 171 cytogenetics, 58

D daily living, 101, 192, 211 dairy, 70, 145 dairy products, 70 danger, 120, 252 data analysis, vii, 1, 188 data collection, 2, 29, 30, 42, 93, 134 data set, 44, 45

263

death, 6, 70, 73, 83, 99, 119, 127, 151, 156, 169, 174, 188, 190, 195, 240 death rate, 70, 83, 119 deaths, 40, 70, 85 decision makers, 18 decision making, 110 decision-making process, 7 decisions, 68, 87, 126, 127, 163, 238 decoding, 74 deconstruction, 24 deductibles, 167, 170, 174 defense, 106 defense mechanisms, 106 deficit, 35, 36, 49 deficits, 163, 213 definition, ix, 4, 9, 14, 15, 16, 81, 82, 99, 115, 118, 120, 125, 135, 139, 154, 157, 165, 174, 224 deformation, 105 degradation, 59 delivery, 12, 26, 40, 148, 150, 151, 157, 165, 167, 195, 205 delusions, 151 demand characteristic, 105 dementia, 113, 230, 240 democrats, 181, 182 demographic change, 45 demographic characteristics, 64, 195 demographic data, 164 demographics, 63, 99, 102, 103 Deng Xiaoping, 250 denial, 73, 126 density, 84, 86 dentistry, 91 Department of Health and Human Services, 3, 5, 55, 73, 77, 96, 98, 162, 167, 185 depression, ix, 5, 43, 119, 147, 148, 149, 150, 152, 153, 154, 155, 156, 157, 158, 159, 160, 161, 162, 163, 164, 165, 167, 168, 170, 171, 173, 175, 176, 179, 180, 181, 182, 183, 184, 185, 194, 195, 214, 235, 239, 240, 248 depressive disorder, 43, 150, 182 depressive symptoms, 164, 181, 183 deprivation, 17, 141 depth perception, 213 destruction, 64 detection, 72, 83, 119, 148, 153, 166 determinism, 126 deviation, 154 diabetes, ix, 7, 69, 71, 74, 83, 84, 85, 107, 115, 117, 119, 132, 140, 145, 190, 191, 199 diabetic retinopathy, 208, 209, 212 Diagnostic and Statistical Manual of Mental Disorders, 148, 151, 179

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264 diagnostic criteria, 161, 184 diet, 70, 84, 140, 141, 142, 143, 144, 255 dietary, 71, 107, 116, 140 dietary habits, 107, 116 diets, 248 differential treatment, 73 differentiation, 66, 69 dioxin, 71 disability, 30, 73, 79, 80, 81, 82, 83, 84, 86, 87, 88, 89, 90, 91, 93, 94, 95, 111, 211, 213, 234, 237, 238, 239, 240 disabled, 81, 87, 88 disappointment, 224 discipline, 165 disclosure, 43, 68, 74 discomfort, 73 discourse, 9, 11, 13, 24, 34, 45, 208, 210, 214, 225, 228, 237, 238, 241 discrete variable, 14 discrimination, viii, 5, 6, 11, 12, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 26, 28, 31, 32, 37, 38, 39, 40, 58, 63, 64, 66, 71, 73, 74, 75, 76, 79, 83, 87, 89, 97, 98, 100, 103, 107, 108, 133, 144, 173, 193, 196, 213 discriminatory, 14, 18, 32, 59, 63, 75, 107 disease activity, 94 disease model, 158 disease progression, 124 diseases, vii, 57, 58, 70, 71, 74, 107, 124, 208 disorder, viii, 57, 65, 66, 75, 151 dissatisfaction, 89, 102 distraction, 141 distress, 136, 194, 233, 254 distribution, 8, 200 distributive justice, 10 District of Columbia, 65, 66, 69, 134 diversity, 19, 33, 39, 46, 82, 98, 183, 257 divorce, 194, 227 DNA, 57 doctor-patient, 107, 128 doctors, 118, 120 dogs, 245, 249, 250, 251, 252, 257 dominance, 35, 38, 143 double jeopardy, 2 Down syndrome, 57 draft, 92 drainage, 212 dream, 193 drug therapy, 85 drug use, 200 drugs, 107, 122, 163 DSM, 116, 148, 150, 151, 161, 179 duration, 181, 189, 195, 204, 214

Index dyslipidemia, 95 dysphoria, 43

E early warning, 150 ears, 226, 227 earthquake, 149, 204 Eastern Europe, 60, 62, 75 eating, 136, 137, 140, 141, 142, 197, 250 economic crisis, 27 economic disadvantage, 16, 18 economic status, 18 economically disadvantaged, 81, 204 economics, 25 educated women, 28, 46 educational attainment, 4 educational process, 68 educational programs, 91, 92, 166, 174 educational research, 55 educators, 92, 116 egg, 118 ego, 105, 106, 111 elderly, viii, 23, 97, 98, 99, 100, 101, 102, 103, 104, 105, 106, 107, 108, 109, 110, 111, 112, 113, 124, 125, 128, 212, 239, 240 elderly population, viii, 97, 98, 107, 108 elders, viii, 27, 97, 98, 101, 103, 133 email, 134 emancipation, 38 embryo, 74 emergency departments, 83 emotion, 106, 109, 110, 123 emotional, x, 26, 36, 100, 104, 105, 106, 107, 110, 135, 136, 137, 143, 149, 150, 156, 157, 184, 193, 196, 207, 208, 213, 214, 228, 229, 233, 235, 238, 244, 246, 248, 249, 256 emotional distress, x, 207, 213, 233 emotional health, 135, 137, 157, 184 emotional state, 156 emotional well-being, 150 emotions, 192 empathy, 237, 238 empirical methods, 48 employees, 66, 74, 77, 174, 176 employers, 66, 74, 166, 170, 173, 174 employment, 62, 66, 73, 80, 87, 108, 133, 163, 199, 213 employment status, 66 empowered, ix, 41, 109, 115, 118, 235 empowerment, 38, 39, 43, 227 encouragement, 192, 214, 235 endocrine, 191

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Index endocrine system, 191 endocrinologist, 116 end-stage renal disease, 83 energy, 89, 101, 104, 105, 117, 131, 138, 161, 227, 233 Energy and Commerce Committee, 174 engagement, 34, 40, 111, 232 enrollment, 199 entertainment, 252 enthusiasm, 211 environment, 28, 37, 38, 41, 82, 92, 102, 106, 108, 117, 118, 154, 237, 247, 255 environmental conditions, 106 environmental context, 105 environmental factors, 61, 71, 72, 82 environmental influences, 39 environmental issues, 40 epidemic, 95 epidemiology, 36, 76, 113, 149 epistemological, 162 epistemology, 16, 35, 163 equality, 9, 14, 37 equating, 66 equilibrium, 64, 107 equities, vii, 1 equity, 11, 13, 58 ERISA, 74, 173 estrogens, 71 ethical issues, viii, 57 ethics, 75, 76 ethnic background, 37, 123 ethnic diversity, 257 ethnic groups, 12, 21, 22, 60, 62, 70, 89, 96, 110, 147, 149 ethnic minority, 3, 93 ethnicity, xi, 4, 11, 14, 15, 18, 19, 20, 21, 22, 29, 31, 37, 39, 44, 45, 46, 48, 59, 80, 83, 89, 113, 117, 132, 160, 243 etiology, 147, 156, 158, 182 eugenics, 59, 63, 64 Eurocentric, 23, 35, 163 Europeans, 60 evening, 210, 238 evil, 132, 163 evolution, xi, 64, 243 exaggeration, 116 examinations, 86, 116, 123, 125, 127, 128 exclusion, viii, 15, 19, 22, 79, 81, 85 exercise, 100, 107, 116, 119, 120, 127, 136, 137, 139, 140, 141, 142, 143, 197, 198, 245, 255 existentialism, 126 expenditures, 167 expertise, 48, 225

265

exploitation, 25, 34, 74 exposure, 28, 69, 71, 74, 195, 196, 200 external influences, 71 eye movement, 82 eyes, 212, 228, 229, 237, 238

F fabric, 63 facilitators, 245 failure, 3, 14, 25, 89, 101, 116, 132 fairness, 9, 181 faith, 100, 108, 118, 163, 215 false negative, 65 familial, 141, 142, 193, 252 family, vii, xi, 27, 38, 40, 59, 62, 63, 74, 76, 87, 89, 93, 99, 100, 102, 108, 110, 116, 117, 118, 121, 126, 134, 137, 139, 141, 142, 143, 148, 149, 153, 155, 162, 163, 175, 176, 191, 193, 197, 198, 199, 221, 234, 243, 244, 246, 247, 249, 250, 251, 252, 254, 256, 257 family history, 141 family income, 143, 199 family life, 99 family members, 38, 89, 100, 234, 247 family planning, 63 family relationships, 148 family support, 197, 198 fat, 70, 145, 252 fatherhood, 181 fatigue, 82, 141, 149, 151, 152, 163, 165 fats, 70 fear, 113, 151, 154, 158, 163, 193, 196, 205, 214, 251 fears, 64, 73, 153, 227, 234 federal funds, 67 federal government, 74 federal law, 67, 173 feedback, 72, 75, 100 feeding, 152, 251 feelings, 42, 102, 107, 141, 149, 150, 151, 153, 155, 157, 163, 165, 166, 175, 192, 199, 210, 215, 217, 220, 223, 225, 228, 229, 234, 237, 246 feet, 86 females, viii, 4, 97, 98, 108, 110, 119, 188, 193, 202, 208, 246, 248, 250, 257 femininity, 28, 225 feminism, 2, 24, 25, 26, 28, 32, 33, 36, 37, 38, 44, 112, 204 feminist, 18, 23, 25, 26, 27, 28, 31, 33, 35, 39, 42, 43, 44, 47, 48, 49, 63, 87, 89, 90, 155, 246 fertility, 182 fetal, 195, 196, 198, 205

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Index

fetus, 74 fiber, 120, 145 fibers, 212 Filipino, 184 financial support, 80 fire, 141, 226, 227, 228, 252 first generation, 249 First Nations, 39 fitness, 135, 137 flashbacks, 151 flexibility, 104 flight, 189 flow, 20, 116, 210, 215, 234 fluid, 212 fluvoxamine, 152 focus group, 33, 34, 39, 41, 42, 43, 135 focus groups, 33, 34, 39, 41, 42, 43 focusing, 16, 17, 65, 90, 148, 193 folklore, 118 food, 7, 101, 107, 116, 142, 145, 193, 233, 251 forests, 249 forgetfulness, 141 formal education, 143 fracture, 84 fragmentation, 84 framing, 2, 8, 9, 10, 36 freedom, 9, 41, 105, 125, 126 friendship, 208, 214, 230 frustration, 6, 107, 139, 215, 235 funding, 68, 166, 167, 168, 172, 183 funds, 66, 67, 69 Fuzzy set theory, 46

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G gait, 82 Gallup poll, 5 gauge, 42 gender, ix, x, 2, 4, 5, 6, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 25, 26, 27, 28, 29, 30, 31, 32, 33, 36, 39, 40, 43, 44, 45, 46, 47, 48, 49, 51, 79, 83, 85, 89, 95, 115, 120, 132, 133, 153, 162, 164, 187, 190, 235, 247 gender differences, 45 gender identity, 19 gender role, 22 gender stereotyping, 5 gene, 58, 61, 65, 66, 69, 71, 74, 76 gene expression, 71 General Health Questionnaire, 162, 181 Generalized Anxiety Disorder, 116 generation, 36, 62, 65, 249 genes, 58, 60, 69, 70, 71, 72, 73

genetic code, 69 genetic defect, 62 genetic disease, 58, 68 genetic disorders, 58, 66 genetic factors, 59, 61, 83, 98 genetic information, 74, 77 Genetic Information Nondiscrimination Act, 74, 76 genetic mutations, 71 genetic programs, 67 genetic screening, 66, 68, 72, 75 genetic testing, 58, 72, 76, 77 genetic traits, 60 genetics, vii, 57, 58, 59, 61, 62, 64, 69, 72, 73, 75, 76, 141, 196 genocide, 22, 63, 64 genome, 57, 74 genomic, 73 genomics, 58 genre, 24 geography, 60 geology, 60 geriatric, 112, 113, 247 gerontology, 99 gestation, 195, 196, 203, 204 gestational age, 205 GHQ, 162 gift, 111 gifts, 155, 193 glaucoma, 208, 212 glucose, 142 goals, 67, 82, 104 God, 34, 72, 100, 109, 110, 163, 221, 252 gold, 7, 226, 227 gold standard, 7 gossip, 43 government, iv, 2, 12, 14, 18, 37, 63, 167, 172, 189 Government Reform Committee, 93 graduate education, 134 graduate students, 44 grandparents, 251 grants, 110 grief, 158, 234, 236, 237 group activities, 102 grouping, 208 groups, viii, ix, 3, 8, 9, 10, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 26, 28, 31, 32, 38, 41, 42, 43, 45, 47, 49, 58, 59, 60, 61, 62, 70, 71, 72, 73, 80, 81, 82, 83, 84, 87, 88, 89, 90, 91, 96, 97, 98, 107, 109, 110, 111, 131, 132, 147, 149, 160, 214, 219, 234, 236, 237, 245 growth, 98, 101, 105, 164, 238 guidance, 109, 237, 246 guidelines, 67, 68, 91, 249

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

Index guilt, 151, 156, 163

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H Haiti, 109, 199 hallucinations, 151 handicapped, 220, 223 handicapped people, 220, 223 hands, 118 hanging, 251 happiness, 102, 104, 108, 110, 136, 137, 153 harassment, 5 hardships, 110, 238 Harlem, 28, 39, 40, 54, 63 harm, 27, 64, 74, 131, 144, 251 harmony, 27, 131, 144 hate, 216 HDL, 119 healing, 117, 118, 208, 218, 229, 235, 236, 237 Health and Human Services, 3, 5, 55, 73, 92, 96, 98, 162, 167, 174, 185 Health and Human Services (HHS), 174 health care costs, 127 health care professionals, 7, 87, 89, 90, 143, 172 health care system, 6, 11, 15, 16, 37, 39, 40, 46, 49, 72, 84, 87, 89, 91, 92, 127, 144 health education, 37, 208, 237 health expenditure, 167 health information, 74, 144 health insurance, 7, 73, 74, 88, 123, 124, 170, 175, 176, 199, 255 health problems, 6, 7, 85, 117, 132, 133, 143, 192 health psychology, 132 health services, 2, 21, 63, 116, 164, 166, 167, 169, 170, 172, 173, 179 health status, ix, 2, 5, 6, 11, 12, 14, 30, 36, 39, 45, 58, 84, 90, 91, 103, 113, 115, 124, 145 healthcare, 11, 58, 86, 117, 118, 132, 148, 162, 163, 165, 166, 167, 168, 169, 170, 171, 173, 176, 210, 237 hearing, 87, 175, 239, 240 hearing impairment, 240 heart, ix, 6, 7, 71, 83, 85, 96, 107, 115, 116, 117, 119, 120, 132, 143, 151, 158, 189, 192, 193, 248 heart attack, 7, 85, 193 heart disease, ix, 6, 7, 71, 83, 85, 96, 107, 115, 117, 119, 120, 132, 143, 192 heart rate, 151, 248 heat, 158 hegemony, 38, 158 helix, 76 helplessness, 88, 107, 151 hemoglobin, 65

267

hemoglobinopathies, 69 hemoglobinopathy, 65 hemorrhages, 212 herbal, 120, 121 herbal therapy, 121 herbs, 118, 120 heredity, 59, 60, 62 heterogeneity, 100 heterogeneous, 44, 190 heterozygote, 66 HHS, 88, 175 high blood pressure, 71, 85, 120 high risk, 5, 68, 119, 127, 179, 205 high-risk, 123, 125 hip, 108, 157 HIPAA, 74 hips, 24, 70 hiring, 74 Hispanic, viii, 4, 7, 65, 97, 98, 109, 113, 148, 153, 155, 158, 160, 179, 180, 182, 247, 250 Hispanics, 7, 98, 159 HIV, 7, 83, 85, 94, 132 Hmong, 155 holistic, 40, 118, 127 homicide, 9 homozygote, 66 honesty, 208 hopelessness, 107 hormone, 71, 202, 204, 205 hormones, 165, 184 hospice, 83, 247, 256 hospital, 36, 37, 76, 85, 149, 185, 247 hospital anxiety and depression scale, 185 hospitalizations, 255 hospitals, 66, 83, 171, 255 host, 22 hostility, 107, 157 household, 28, 108, 189, 202, 252, 255 households, 13, 28, 189, 191, 253 housing, 40, 62, 101, 102, 109, 112, 239, 249, 255 HPA, 205 human, x, xi, 13, 14, 15, 16, 34, 42, 43, 44, 57, 58, 59, 61, 62, 68, 74, 102, 111, 126, 132, 133, 143, 157, 191, 203, 205, 207, 208, 243, 244, 245, 246, 247, 248, 255, 256, 257 human agency, 111 human behavior, 44, 132 human condition, 203 human experience, x, 16, 207 human genome, 74 Human Genome Project, 58 human nature, 245 human rights, 15

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Index

humanity, 34, 43, 105 humans, xi, 57, 58, 59, 133, 243, 244, 250 humility, 217, 218 humorous, 229 hunting, 249 husband, 116, 142, 148, 149, 153, 193, 209, 224, 225, 227, 228, 251 hygiene, iv, 101 hyperactivity, 151 hypercholesterolemia, 95 hypersomnia, 151 hypertension, 5, 7, 69, 74, 85, 107, 116, 123, 132, 143, 192, 199 hypertensive, 128 hypothesis, 155 hypothyroidism, 116

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I identification, 21, 58, 65, 66, 68, 91, 135, 159, 216 identity, 3, 4, 9, 17, 18, 19, 20, 23, 25, 29, 43, 45, 46, 76, 88, 125, 132, 156, 193, 213, 241 ideology, 9, 34, 36, 250 imagery, 197, 198, 225, 238, 241 images, 42, 45, 90, 227, 228 immigrants, 60, 61, 62 immigration, 30, 62, 64 immunization, 125 impairments, 80, 82, 94, 214 implementation, vii, 1, 63, 69, 172, 173 INA, 74 inactive, 9, 123 incarceration, 9 incentive, 69 incentives, 84 incidence, 69, 70, 71, 72, 84, 87, 145, 148, 162, 211 inclusion, viii, 20, 21, 79 income, 5, 6, 8, 13, 37, 45, 46, 63, 88, 91, 103, 109, 116, 134, 143, 175, 193, 194, 199, 200, 204, 250 incomes, 107, 183, 199, 255 incurable, 65 independence, 27, 82, 89, 212, 213, 214, 218, 233, 236 India, 65, 153, 249, 252, 257 Indian, 249, 252, 257 Indiana, 62 Indians, 60, 249, 252 indication, 141 indicators, 98, 110, 116, 153, 198, 201 indigenous, 30, 60 individual rights, 24 individualism, 24, 43, 105 industry, 101, 249

inequality, vii, 9, 13, 14, 16, 18, 22, 26, 31, 38, 40, 46 inequity, 11, 12, 13, 22, 38, 40, 48 infancy, 69, 244, 256 infant mortality, 195, 196 infants, 69, 152, 153, 180, 195, 200, 203, 205 infection, 192, 205 infectious, 203 infectious disease, 203 infectious diseases, 203 inferences, 107, 210 inferiority, 60, 62 inflammatory, 63 influenza, 124 informed consent, 68 inheritance, 60, 61, 69, 74, 75 inherited, 61 initiation, 210 injuries, 19, 20, 22, 82, 121, 213 injury, 13, 20, 122, 151, 193, 241 injustice, 10, 14, 25, 193 innovation, 3, 29 inoculation, 118 insane, 60 insight, ix, 28, 115, 123, 132, 143, 188, 238, 239 insomnia, 141, 151 inspiration, 233 instability, 28 instinct, 252 institutional configurations, 12 institutions, 9, 12, 15, 16, 26, 31, 32, 47, 60, 62, 100 instruments, 40, 46, 102, 158, 159, 160, 180, 182, 191, 196 insurance, ix, 6, 7, 66, 73, 74, 85, 88, 115, 120, 121, 124, 165, 166, 170, 173, 174, 175, 176, 193, 255 insurance companies, 66, 73, 166, 170, 176, 255 intangible, 117 integration, 3, 82, 112, 145, 166, 168 intelligence, 61, 62 intentions, 3 interaction, 12, 18, 30, 31, 41, 42, 43, 44, 45, 82, 91, 99, 100, 211, 215, 225, 233, 234, 246 interactions, 16, 18, 31, 42, 43, 45, 46, 59, 103, 120, 203, 211, 213, 246, 247 interdisciplinary, 31, 44, 145, 254 internal consistency, 199 internship, 121 interpersonal relations, 15, 47, 236 interpersonal relationships, 15, 47, 236 interrelationships, 40 intervention, 13, 18, 22, 30, 72, 101, 110, 119, 133, 153, 156, 168, 194, 196, 197, 198, 200, 216, 255 interview, 41, 42, 45, 157

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

Index interviews, 15, 34, 39, 41, 42, 43, 127, 144, 159, 234 intimacy, 229, 238 intimidating, 41 intravenous, 85 intrinsic, 34, 208, 240 intrinsic value, 208 inventories, 102 investigations, 57, 124 invisible hand, 21 ions, 32, 36 irritability, 151 ischemic, 7 island, 215 isolation, 43, 108, 213, 235, 248, 256

J JAMA, 112, 128, 129 Japanese, 111, 155 Jews, 75 jobs, 4, 22 judge, 35, 140 judgment, 109, 140 justice, 10, 11, 12, 14, 15, 24, 32, 36, 37, 38, 42, 43, 49, 175 justification, 68

K

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Kaiser Family Foundation, 6, 14, 37, 52, 55, 83, 94 kernel, 71 kerosene, 226, 227 kidney, 85, 107 kidney failure, 107 kidney transplant, 85 kidney transplantation, 85 killing, 63 Korean, 155, 182

L labeling, 47 labor, x, 4, 151, 187, 202, 204 labor force, 4 lack of confidence, 117 lactation, 198 language, 30, 36, 48, 117, 159, 162, 163, 210, 211, 229, 240, 257 language barrier, 229 large-scale, 18 later life, 111 Latino, 24, 179, 247, 250

269

Latinos, ix, 71, 81, 115, 120, 124, 250, 256 laughing, 226, 229, 230, 231, 232, 233, 236, 241 laughter, 225, 226, 228, 229, 230, 238, 239, 241 law, 2, 15, 22, 24, 25, 36, 62, 67, 74, 76, 167, 170, 171, 172, 173, 174 laws, viii, 24, 25, 38, 57, 60, 61, 62, 65, 66, 67, 68, 73, 167, 172, 173 LDL, 119 learning, vii, 41, 122, 209, 210, 214, 222, 234, 237 legal blindness, 239 legislation, 2, 59, 62, 64, 65, 66, 67, 68, 73, 82, 92, 165, 166, 168, 169, 170, 171, 172, 173, 174, 175, 176, 185 leisure, 102, 111, 211, 214 lens, 5, 31, 48, 188, 212 lenses, 212 lethargy, 141 liberation, 25 life changes, 107 life course, 101 life expectancy, 5, 6, 188 life experiences, ix, 131, 132, 133, 144, 199, 228, 238 life quality, 102 life satisfaction, viii, 97, 99, 100, 101, 102, 104, 107, 108, 110, 112, 113, 240 life span, 101, 245 life style, 71, 197 lifestyle, 84, 100, 101, 116, 124, 125, 127, 142, 191, 203, 213 lifestyle behaviors, 142 lifestyle changes, 124, 125 lifestyles, ix, 101, 103, 115, 123, 203, 245 life-threatening, 9 lifetime, viii, 97, 98, 107, 108, 111, 173 likelihood, 73, 80, 81, 88, 92, 123 Likert scale, 160 limitation, 82 limitations, 24, 32, 40, 82, 86, 87, 95, 170, 212, 213 linear, 133 linguistic, 84, 155 links, 139, 163 lipid, 85 listening, 41, 42, 135, 197, 213, 215, 224, 235 literacy, 62, 88, 159 litigation, 24, 168 living conditions, 101, 108 living environment, 189 lobbying, 168 loneliness, 214, 227, 235, 239, 243, 246, 248, 257 long period, 72 longevity, 103, 108 longitudinal study, 113

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Index

losses, x, 100, 101, 103, 107, 195, 207, 212, 213, 235 love, 211, 214, 219, 225, 226, 227, 228, 235, 251 low birthweight, 43, 205 low risk, 111, 195 low-income, 91, 109, 193, 194, 204 lung, 120 lung disease, 120 lupus, 7

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M macular degeneration, 208, 209, 212, 239, 241 magazines, vii, 1, 2 magical thinking, 106 mainstream, 13, 23, 24, 25, 31, 39, 48, 49, 58, 106 maintenance, 24, 60, 68, 95, 100, 103, 105, 127, 128, 132, 141, 214, 235 major depression, 150 major depressive disorder, 150 malaria, 65, 69 males, 22, 23, 27, 46, 81, 163, 188, 190, 193, 208, 248, 250 malignant, 74 malpractice, 121 maltreatment, 74, 75 mammals, 245 mammogram, 124 mammography, 38, 84 management, 65, 83, 84, 85, 87, 93, 95, 113, 136, 137, 202, 212, 254 mandates, 127, 166 manic, 151 manipulation, 121, 122 mapping, 62 marches, 24 marginalization, 18, 203 marital status, 4, 19, 152 market, 4 marketing, 113 marriage, 66, 191, 207, 224, 226, 227, 228 marriages, 60, 66 Marxism, 25, 56 Maryland, 36, 50, 65, 134, 167, 175, 239 mask, 14, 24 mass media, 67 mastectomy, 84 mastery, 195 maternal, 39, 149, 152, 156, 157, 166, 168, 171, 176, 183, 184, 195, 204, 244, 245 maternal age, 149 matrix, 14, 17, 20 meals, 235, 251

meanings, 18, 27, 31, 32, 111, 149, 158, 183, 211, 238 measurement, x, 12, 46, 48, 147, 157, 159, 161, 204 measures, 44, 45, 46, 64, 66, 84, 105, 118, 125, 135, 141, 157, 188, 190, 194, 200, 201, 202 media, 22, 67, 69, 166 median, 102, 199 mediators, 193 Medicaid, 21, 74, 124, 167, 170, 172, 176 medical care, 72, 98, 117, 118, 149, 165 medical school, 121 Medicare, 50, 74, 84, 96, 124, 176 medication, 107, 120, 152 medications, 85, 119, 120, 152, 212, 255 medicine, ix, 2, 58, 64, 65, 73, 75, 91, 112, 115, 117, 118, 120, 121, 122, 127, 128, 129, 145 melting, 45, 176 membership, 46, 102, 132 memory, 227 men, viii, ix, 4, 5, 7, 8, 9, 13, 14, 15, 16, 17, 18, 21, 22, 23, 25, 28, 40, 59, 64, 70, 80, 82, 83, 85, 87, 94, 97, 98, 124, 131, 133, 188, 189, 202, 208, 211, 212, 221, 235, 243 menopause, 71 mental disorder, 179 mental health, 5, 43, 83, 101, 109, 117, 135, 136, 139, 148, 149, 162, 163, 165, 166, 167, 168, 169, 170, 171, 172, 173, 174, 175, 176, 179, 181, 194, 244 mental illness, 62, 154, 155, 157, 166, 167, 170, 173 mental retardation, 62 mentoring, 194 meritocracy, 25 messages, 5, 21, 72 meta-analysis, 152, 153, 180, 183 metabolic, 60 metabolism, 58 metals, 71 meta-message, 220, 238 Mexican, 50, 155 microbial, 57 microvascular, 212 middle class, 26, 28, 35, 36, 116, 152 middle-aged, 94 midlife, 101 midwives, 118 migrant, 183 military, 72 milk, 71, 152 mimicry, 126 minorities, 3, 7, 15, 23, 24, 25, 26, 27, 73, 84, 93, 149

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Index minority, viii, 3, 8, 11, 21, 22, 23, 25, 26, 77, 82, 83, 84, 87, 90, 91, 93, 97, 98, 112, 149, 163 minority groups, 82, 83, 84, 91 minors, 68 mirror, 28 misinterpretation, 68, 106 misunderstanding, 66 MIT, 256 mobility, 82, 86, 87, 96, 107, 238, 241 MOD, 73 modalities, ix, 115, 120 models, 8, 11, 20, 29, 44, 49, 80, 91, 104, 110, 156, 158 moderates, 105 modernism, 25 momentum, 168 money, 167 mood, ix, 141, 147, 149, 181, 182, 232, 248 mood disorder, ix, 147, 149, 181 morale, viii, 97, 99, 100, 102, 103, 104, 106, 108, 109, 110, 113, 214 morality, 10 morbidity, 39, 69, 75, 84, 127 mortality, viii, 39, 69, 70, 72, 75, 83, 84, 95, 97, 98, 127, 132, 195, 196 mortality rate, viii, 70, 72, 97, 98 motherhood, ix, 28, 147, 155, 156, 160, 161, 166, 176, 180 mothers, 21, 43, 148, 149, 151, 152, 153, 155, 158, 160, 165, 166, 168, 169, 170, 171, 172, 173, 176, 179, 180, 181, 183, 199 motivation, 132, 133 motives, 104 movement, 24, 26, 59, 62, 63, 89, 198, 235 MSW, 196 multicultural, 246 multidimensional, 9, 20, 32, 45, 108, 189, 202, 229 multidisciplinary, x, 26, 27, 102, 158, 159, 187 multiple births, 152 multiple regression, 102 multiple sclerosis, 96 multiplicity, 16, 26 multivariate, 182 muscles, 122 musculoskeletal, 121, 122 musculoskeletal system, 122 Muslims, 249, 257 mutant, 58 mutation, 71 mutations, 69, 71, 76 myocardial infarction, 7, 93, 96 myopic, 45

271

N narratives, 37, 39, 42, 43, 51, 111, 118, 142, 143 nation, 98, 172, 175, 257 National Council on Disability, 95 National Health Interview Survey, 129, 195 National Institutes of Health, 66, 174 national origin, 15, 45 national policy, 10 nationalism, 25 nationality, 14, 19, 31 Native American, 118 natural, 21, 36, 59, 60, 61, 99, 132, 208 natural science, 59 natural sciences, 59 negative attitudes, 84 negative consequences, 37, 72 negative experiences, 86 negative life events, 104 negative relation, 157 neglect, viii, 10, 66, 86, 97, 98, 100, 112 negotiating, 39, 46, 193 neonatal, 68, 69 nerve, 212, 215, 217 nerves, 122, 205 network, 214, 235 networking, 134 neuroendocrine, 202, 205 neuroendocrine system, 202 neuroticism, 153 New Freedom Initiative, 82 newsletters, vii, 1, 2 newspapers, 2 Newton, 156, 183 NICU, 180 Nigeria, 182 nightmares, 151 NIH, 174, 175 nitrate, 85 Nobel Prize, 193 non-biological, 154 nondisclosure, 68 non-profit, 136 normal, 20, 29, 61, 99, 100, 157, 212, 213, 222, 234, 235 normal aging, 100 norms, 103, 154 nuclear, 116 nucleus, vii nurse, xi, 126, 156, 162, 243, 255 nurses, 76, 122, 148, 168, 169, 172, 176, 240, 254

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Index

nursing, xi, 2, 33, 83, 91, 96, 103, 144, 145, 149, 162, 164, 165, 183, 184, 203, 240, 243, 245, 247, 254, 255, 256, 257 nursing care, 33, 144 nursing home, 83, 247, 255, 256 nurturance, 246 nutrition, 101, 119, 198, 256

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O obese, 7, 116, 140 obesity, 5, 7, 84, 85, 107, 116, 117, 120, 192 objectivity, 9, 24, 25 obligation, xi, 23, 68, 134, 243, 254 obligations, 23 obstetricians, 168 occupational, 20, 45, 71, 98, 103, 254 occupational prestige, 45 occupational risks, 98 occupational therapy, 254 OCD, 151 odds ratio, 195 old age, 99, 103, 108 older adults, viii, xi, 93, 97, 98, 100, 101, 109, 110, 113, 128, 207, 210, 211, 212, 213, 214, 235, 236, 237, 240, 241, 257 older people, 100 omission, 11, 103 oncology, 73, 76 oppression, 12, 16, 17, 18, 20, 21, 26, 34, 41, 43, 87, 89, 90, 132, 133 optimal health, 140 optimism, 103, 104 oral, 36, 43 oral tradition, 36 organic, 69, 74 orientation, 38, 89, 105, 188, 238 orthodox, 24 osteopathy, 121 osteoporosis, 84, 95, 96 otherness, 18 outpatient, 170, 174 overload, 142 overweight, 5, 7, 116, 119, 140 ownership, 246, 250

P pain, 7, 59, 64, 84, 107, 126, 192, 215 paints, 215 Pakistan, 153 panic disorder, 151

Pap, 86, 119, 124 paradigm shift, 118 paradox, 240 parameter, 59 parenthood, 155 parenting, 185, 191 parents, 60, 68, 89, 128, 166, 251 paroxetine, 152 participant observation, 33, 39, 41, 127 partnership, 93 partnerships, 83 passive, 99, 118, 219, 220, 229, 236 paternal, 245 paternalism, 34 pathology, 58, 190 patho-physiological, 202 pathways, x, 31, 71, 187, 255 patient care, 40, 254 patients, 7, 11, 23, 36, 39, 62, 64, 72, 84, 87, 93, 94, 95, 109, 110, 112, 125, 128, 132, 145, 161, 166, 167, 176, 237, 247, 248 patterning, 148, 183, 244 Paxil, 152 PCBs, 71 pedagogical, 36 pediatric, 87 pediatrician, 157 peer, vii, 1 peer review, vii, 1 peers, 25, 221, 235, 237 pelvic, 86 penicillin, 69 per capita, 167 Perceived Stress Scale, 190, 196, 198, 200 perception, 33, 49, 90, 104, 106, 108, 125, 133, 139, 140, 162, 164, 196, 199, 213 perceptions, x, 60, 64, 72, 74, 75, 82, 85, 87, 89, 104, 108, 127, 133, 134, 143, 144, 157, 187, 189 perinatal, ix, 147, 148, 149, 169, 171, 183, 184, 185 periodic, 123, 125, 128, 234, 237 permit, 17, 25, 30, 117 perseverance, 105 personal communication, 167 personal control, 108, 214, 235 personal history, 44 personal norms, 212 personal problems, 162, 198 personal values, 75, 123 personality, 104, 105, 164 personality characteristics, 104 persons with disabilities, 80, 82, 89, 91, 96 pets, xi, 101, 243, 244, 245, 246, 247, 248, 249, 250, 252, 253, 255, 256, 257

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

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Index pharmaceutical, 69, 120 pharmaceuticals, 73 pharmacogenetics, 73 phenotypic, 73 Philadelphia, 51, 144, 256 philosophical, 117, 118, 123, 125, 126, 127, 158 philosophy, 4, 60, 100, 126 phone, 196, 214, 234 PHS, 173 physical activity, 71, 100, 101, 119, 123, 124, 125, 128, 139, 245, 257 physical fitness, 135 physical health, 135, 136, 139, 140, 166, 168, 173, 255 physical well-being, 108 physicians, 37, 62, 64, 75, 84, 117, 118, 140, 145, 163, 172 Physicians, 55, 121, 127 physics, 105 physiological, x, 40, 71, 82, 99, 156, 176, 187, 189, 190, 191, 193, 202, 204, 247 physiological factors, 40 pilot study, 94 placenta, 202 placental, 152 plague, 74 planning, 33, 49, 63, 113 plasma, 204 play, 43, 70, 71, 76, 83, 89, 100, 117, 126, 133, 139, 141, 215, 217, 253 pleasure, 126 pluralism, 26 polarity, 29 policy community, 41 policy makers, vii, 10, 29 policy making, 183 policy reform, 165 political power, 47 politics, vii, 2, 10, 18, 23, 53, 76, 240 polymorphisms, 69 poor, x, 4, 5, 6, 13, 14, 17, 39, 61, 62, 63, 64, 71, 98, 101, 107, 116, 139, 140, 141, 187, 188, 190, 192, 193, 194, 196, 206 poor health, x, 5, 107, 139, 141, 187, 188, 190, 206 population, vii, viii, ix, 1, 3, 4, 7, 9, 11, 12, 13, 28, 58, 63, 64, 65, 66, 72, 73, 75, 79, 80, 92, 95, 97, 98, 102, 103, 104, 107, 108, 109, 110, 118, 127, 131, 159, 173, 182, 189, 193, 210 population group, 28 positive aging, 101 positive attitudes, 213, 235 positive behaviors, 104 positive correlation, 101

273

positive feedback, 100 positive relation, 250 positive relationship, 250 positivist, 13, 14 postmenopausal, 120 postmenopausal women, 120 postmodern research, 42 postmodernism, 25 postoperative, 84 postpartum depression, ix, 147, 148, 149, 150, 152, 153, 154, 155, 156, 157, 158, 160, 161, 162, 164, 165, 166, 167, 168, 169, 170, 172, 175, 176, 179, 180, 181, 182, 183, 184, 185 postpartum period, 149, 151, 155, 156, 161, 165, 166, 173 poultry, 70 poverty, viii, 4, 12, 13, 81, 87, 88, 97, 98, 101, 107, 111, 162, 194 poverty alleviation, 13 poverty line, 81, 88 power, 3, 10, 12, 14, 15, 16, 17, 18, 20, 24, 28, 30, 31, 38, 42, 44, 47, 106, 109, 111, 127, 161, 181, 192, 218, 220, 236, 237, 240 power relations, 3, 14, 24, 42 pragmatic, 154 pragmatism, 25 praxis, 26 prayer, ix, 109, 110, 115, 120, 137, 163 prediction, 203 predictors, 108, 109, 117, 141, 152, 153, 180, 190 pre-existing, 17, 74, 85, 151 preference, 15 pregnancy, 9, 39, 40, 69, 74, 148, 149, 150, 152, 153, 156, 158, 171, 181, 182, 183, 189, 194, 195, 197, 198, 199, 200, 202, 203, 204, 205, 206 pregnant, x, 150, 156, 159, 167, 168, 170, 172, 176, 187, 189, 195, 196, 199, 200, 202, 204 pregnant women, 150, 167, 168, 170, 172, 176, 195, 199, 202, 204 prejudice, 192 prematurity, 204 premium, 66 premiums, 74, 167 prenatal care, 40, 171, 195 president, 63 President Bush, 170 President Clinton, 173 pressure, 5, 71, 85, 119, 120, 122, 176, 212, 247, 248, 256 preterm delivery, 43, 189, 195, 196, 204, 206 pre-term labor, 204 preventative care, 167

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

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274

Index

prevention, 39, 68, 76, 83, 85, 87, 91, 95, 116, 118, 127, 164, 165, 166, 167, 168, 182, 184, 194, 255 preventive, viii, 37, 65, 79, 83, 86, 90, 94, 117, 119, 120, 123, 124, 125, 126, 127, 128, 141 primacy, 117 primary care, 43, 83, 116, 128, 182, 239 prisons, 60 privacy, 68, 73, 74 private, 10, 28, 66, 84, 85, 124, 166, 168, 196, 211, 255 private sector, 166 proactive, 126, 135 probability, 81 probe, 29, 102 problem behaviors, 247 problem solving, 106, 193 problem-focused coping, 106, 110 problem-solving, 107, 229 procreation, 21, 61 production, 29, 43, 48, 212 professions, 26, 91, 92 profit, 26, 136 progesterone, 71 prognostic value, 240 program, vii, viii, x, 1, 9, 13, 38, 39, 57, 65, 66, 67, 68, 121, 136, 172, 187, 190, 196, 197, 199, 200, 202, 203, 234 prolapse, 116 proliferation, 65, 212 pronunciation, 211 property, iv prophylactic, 65, 69 prosperity, 250 prostate, 119 prostate cancer, 119 protection, 28, 65, 68, 69, 73, 252 protective factors, 156 protective mechanisms, 40 protocol, 167 protocols, 30, 32, 40, 58, 166, 168, 172 PSS, 198, 200 psyche, 163 psychiatric disorder, 149 psychiatric disorders, 149 psychiatric illness, 149, 150, 158 psychiatrists, 157 psychic process, 106 psychological distress, 154, 161 psychological problems, 153 psychological stress, x, 187 psychological variables, 93 psychological well-being, 99 psychologist, 189

psychology, vii, 2, 51, 133, 144, 247 psychometric properties, 160 psychopathology, 113, 153 psychopharmacological, 154 psychoses, 167 psychosis, 149, 151, 167, 169, 170, 175 psychosocial factors, 98, 190, 205 psychosocial stress, 191 psychosocial variables, 99 psychosomatic, 55, 181, 203, 205 psychotherapeutic, 154 psychotherapy, 112, 116, 241, 257 psychotic, 149, 151 PTSD, 151 public awareness, 155, 171 public education, 66 public health, 2, 36, 39, 40, 48, 68, 82, 95, 184 Public Health Service, 82, 96, 170, 173, 175 public housing, 112, 239 public interest, 168 public opinion, 168 public policy, xi, 2, 8, 9, 10, 30, 45, 75, 90, 100, 243, 255 public sector, 30, 167 puerperium, 182 Puerto Rican, 43, 161 pupils, 212

Q qualifications, 62 qualitative research, x, 40, 42, 45, 123, 156, 207 quantitative research, 44, 49, 158 query, 140 questionnaire, 140, 195, 196, 199 quotas, 62

R race, viii, x, 2, 4, 5, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 44, 45, 46, 47, 48, 49, 50, 51, 55, 57, 58, 59, 60, 69, 75, 76, 79, 83, 89, 95, 113, 125, 132, 133, 164, 175, 187, 191, 192, 195, 235, 236 racial differences, 61, 103 racial groups, 14 racial minorities, 80, 82, 98 racism, viii, 5, 10, 11, 12, 14, 16, 18, 19, 20, 22, 23, 24, 25, 28, 35, 36, 39, 43, 44, 64, 97, 98, 107, 108, 113, 132, 133, 164, 195, 196, 199, 200 radiation, 70, 84

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

Copyright © 2009. Nova Science Publishers, Incorporated. All rights reserved.

Index radiation therapy, 70 radiotherapy, 84 rain, 184 random, 22, 126 range, 19, 30, 59, 64, 104, 105, 106, 107, 108, 116, 140, 159, 161, 190, 194, 199, 239 rat, 245 rating scale, 157, 181 ratings, 190, 199, 200 rationality, 105 reactivity, 150 reading, 100, 217, 218, 234, 248 reality, 4, 8, 9, 11, 21, 25, 26, 27, 29, 30, 33, 37, 44, 101, 105, 117, 127, 142, 164, 188, 220, 234 reciprocal relationships, 106 recognition, 26, 102, 155, 160, 169 reconstruction, 241 recovery, 204, 220 recreation, 194, 246 recreational, 66, 99, 100, 102 red blood cells, 64 redistribution, 8 reflection, 34, 123 reflectivity, 12, 32, 49 regular, 116, 120, 123, 125, 127, 136, 140, 141, 142, 208, 226, 227, 233, 238 regulation, 209 regulations, 68, 172 rehabilitation, 84, 248, 255 Rehabilitation Act, 82 reimbursement, 166, 170 reinforcement, 61 relationship, ix, x, xi, 25, 31, 42, 57, 58, 75, 102, 103, 107, 108, 110, 126, 133, 139, 147, 148, 149, 152, 153, 157, 165, 166, 167, 180, 187, 188, 190, 191, 195, 196, 197, 199, 207, 224, 233, 240, 243, 244, 245, 246, 247, 248, 249, 250, 255 relatives, 73, 100, 102, 155, 222, 253 relaxation, 143 relevance, 104, 159 reliability, 102, 157, 160, 161, 199 religion, 14, 17, 18, 19, 30, 45, 109, 110, 116, 163, 194, 225, 249 religiosity, 199 renal, 7, 83 renal disease, 7, 83 repression, 38 reproduction, 4, 191, 211 Republican, 171, 184 research and development, 67 research design, 30, 43 resilience, viii, 97, 99, 104, 105, 110, 112, 114, 118, 192, 214, 239

275

resistance, 17, 26, 27, 34, 42, 120, 189 resolution, 63, 104, 116, 229 resources, 4, 9, 10, 13, 20, 23, 28, 31, 40, 41, 73, 80, 81, 82, 87, 89, 91, 102, 104, 106, 107, 109, 171, 172, 188, 189, 190, 192, 193, 205, 213, 235, 238, 239, 255 respiratory, 82, 83, 192 retina, 208, 212 retinal detachment, 212 retinitis pigmentosa, 208 retinopathy, 212 retirement, 99, 100, 112, 113 rheumatoid arthritis, 84, 93, 94, 240 rhythm, 238 risk, x, 5, 6, 7, 23, 28, 39, 40, 43, 66, 69, 70, 71, 73, 74, 75, 77, 81, 83, 85, 87, 89, 90, 93, 96, 100, 104, 119, 123, 124, 125, 127, 129, 134, 139, 140, 141, 145, 148, 149, 150, 151, 152, 153, 159, 162, 165, 166, 176, 179, 182, 183, 187, 191, 195, 204, 205, 220, 227, 237 risk assessment, 149, 165 risk factors, 5, 40, 43, 69, 70, 71, 75, 85, 96, 123, 129, 148, 152, 153, 159, 162, 165, 176, 182, 205 risk perception, 93 risks, 38, 39, 64, 65, 68, 69, 71, 74, 91, 98, 141, 170 risk-taking, 220 rods, 212 royalty, 249 rural, 71, 101, 240, 250 rural areas, 71

S SAD, 162 sadness, 153, 155, 165 safety, 83, 237 salary, 193 saliva, 201 sample, 44, 45, 49, 66, 81, 102, 103, 109, 123, 134, 136, 148, 160, 164, 246, 248 sampling, 46, 134 sanctions, 8 sanitation, 62 Sartorius, 162, 182 satisfaction, viii, 46, 97, 99, 100, 101, 102, 103, 104, 105, 107, 108, 110, 112, 113, 240 saturated fat, 120 scarcity, 117 SCD, 64, 65, 66, 67, 69, 73, 75 schema, 19, 59, 99, 132, 240 schemas, 145 schizophrenia, 167 scholarship, 12, 29, 30, 31, 32, 47, 49, 50

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

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276

Index

school, 65, 121, 197, 199, 215 scientific community, 38, 60, 90 scores, 102, 159, 161, 199, 202 screening programs, 58, 65, 66, 67, 68, 69, 75, 76 search, 2, 26, 183, 193 searches, 227 second generation, 249 second-class citizens, 108 secular, 34 security, 245, 249, 252 sedentary, 84 sedentary lifestyle, 84 segregation, 100 selective attention, 106 self image, 136, 137 self worth, 246 self-care, 198 self-concept, 100, 103, 213 self-confidence, 215, 232 self-definition, 125 self-efficacy, 101, 123, 125, 128 self-esteem, 110, 152, 156, 195 self-expression, 214 self-help, 188, 190 self-identity, 125 self-image, 107, 213, 215, 224, 225, 227 self-interest, 25 self-report, 160, 199, 214, 254 self-reports, 214 self-worth, 107 semantic, 161 semantics, 161 senate, 170, 181, 184 Senate, 54, 82, 169, 170, 172, 173, 174, 175 sensation, 158 sensitivity, x, 87, 91, 160, 164, 168, 207 separateness, 133 separation, 43, 155 sepsis, 69 sequelae, 156 sequencing, 57 sertraline, 152 service provider, 109 services, 2, 8, 11, 13, 18, 21, 26, 28, 47, 58, 63, 73, 84, 87, 90, 94, 116, 120, 123, 124, 125, 127, 128, 144, 164, 165, 166, 167, 168, 169, 170, 171, 173, 175, 194, 254 SES, 14, 47, 98, 116, 195 set theory, 46 severity, 71 sex, 22, 47, 93, 226, 227 sexism, viii, 5, 28, 97, 98, 107, 108, 132, 133, 200 sexual abuse, 5

sexual activities, 210 sexual activity, 228 sexual harassment, 23 sexual health, 237 sexual orientation, 45, 46 sexuality, 17, 31, 87, 207, 208, 210, 214, 224, 225, 228, 232 sexually transmitted disease, 117 shame, 153, 175, 192 shock, 215, 234, 236 shortage, 28 short-term, 162 siblings, 89 sickle cell, 65, 66, 69, 76 sign, 22, 83, 141, 150, 192, 196, 230 signaling, 197 signals, 153, 229 signs, 140, 141, 172, 196 similarity, 195 singular, 8, 109 sites, 84, 161 skills, 31, 107, 251 skin, 9, 26, 46, 69 slavery, 34, 132 slaves, 59, 118 sleep, 141, 161, 198, 249 sleep deprivation, 141 sleep disturbance, 161 smallpox, 59 smoke, 120 smokers, 76 smoking, 7, 71, 72, 86, 190, 200, 239 SOC, 189, 190, 191, 192 social activities, 100, 143 social behavior, 104, 108 social capital, 189 social change, 26, 47 social class, 13, 18, 19, 32, 44, 45, 61, 132, 164, 190 social construct, 12, 27, 32, 36, 117 social context, viii, 11, 13, 17, 23, 32, 75, 79, 133, 182, 244, 247 social environment, x, 187 social fabric, 23 social factors, 45, 101, 165, 183, 247 social gerontology, 111 social group, 16, 17, 32, 149 social ills, 63 social inequalities, 45 social influence, 72 social institutions, 60 social integration, 112 social isolation, 43, 256

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

Copyright © 2009. Nova Science Publishers, Incorporated. All rights reserved.

Index social justice, 10, 11, 12, 14, 15, 24, 32, 36, 37, 38, 42, 43, 49, 175 social life, 16 social network, 40 social order, 25 social phenomena, 236 social policy, viii, 3, 36, 62, 63, 76, 79 social problems, 8, 16, 47 social relations, 10, 14, 16, 17, 102, 137, 139, 141, 234, 240 social relationships, 10, 102, 137, 139, 141, 234, 240 social resources, 102, 109 social roles, 99, 213 social sciences, 29, 42, 132 Social Security, 173 social services, 21 social skills, 251 social status, 3, 5, 6, 10, 12, 20, 155, 192 social structure, 145 social support, x, 101, 104, 110, 112, 152, 153, 155, 183, 184, 187, 194, 195, 213, 214, 235, 239, 244, 246, 254, 255, 257 social support network, 155 social systems, 32 social theory, 203 social withdrawal, 101 social work, 254 socialization, 233, 247 sociocultural, 155, 156, 157, 158, 162, 163, 164, 176, 182, 205 socioeconomic, ix, 45, 70, 71, 83, 84, 90, 98, 99, 107, 109, 116, 117, 123, 131, 152 socioeconomic background, 109 socioeconomic status, 71, 84, 98, 99, 116, 117, 152 sociological, 42, 45, 145 sociology, 2 solubility, 65 somatization, 154, 158, 182 sores, 64 sounds, 225 specialization, 31 species, 57, 59, 245 specific knowledge, 166 specificity, 74, 160, 168 spectrum, 83 speech, 28, 151, 181, 215, 217, 238 spheres, 18, 103 spinal cord, 241 spinal cord injury, 241 spiritual, 27, 109, 110, 116, 118, 135, 136, 137, 193, 217 spirituality, 100, 109, 110, 118, 139, 142, 163, 194, 203, 240

277

sponsor, 171 spontaneity, 211 spouse, 152, 251 stability, 100, 181 stages, 72, 189, 245 stakeholders, 33 standards, 5, 31, 35, 148, 155, 173 state laws, 62, 66, 67 statistics, 80, 81, 101, 116 stereotypes, 5, 30, 45, 46, 47, 84, 107, 237 stereotyping, 14, 84, 87, 133, 164 sterilization, 21, 62, 63, 64 stigma, 87, 88, 90, 148, 166, 176, 234 stigmatization, 66, 68 stigmatized, 67 stimulus, 190, 202 stock, 59, 61, 63, 101 storage, 68, 135 strain, 40, 41, 105 strains, 47, 65 strategies, ix, 8, 11, 12, 14, 24, 26, 31, 40, 42, 73, 80, 90, 91, 102, 104, 105, 106, 107, 108, 110, 112, 117, 118, 127, 131, 165, 171, 213, 235, 237, 238, 239, 241 strategy use, 213 stratification, 35 strength, 43, 87, 104, 109, 120, 163, 189, 213, 214, 235, 239 stress, x, 5, 28, 29, 40, 43, 71, 84, 98, 104, 105, 107, 113, 116, 117, 126, 127, 135, 136, 137, 139, 141, 142, 143, 152, 154, 187, 188, 189, 190, 191, 192, 193, 194, 195, 196, 197, 198, 199, 200, 201, 202, 203, 204, 205, 230, 240, 246 stress level, 84, 188, 202 stressful events, 190, 196 stressful life events, 152, 190, 195, 204, 206 stressors, x, 28, 109, 150, 187, 189, 190, 191, 192, 194 stroke, 7, 64, 107, 119, 143, 212 structural barriers, 86 structural changes, 40 structuring, 28, 166 students, vii, 44, 190, 230, 241, 249, 256 subgroups, 9 subjectivity, 12, 32, 49 sub-Saharan Africa, 65 substance abuse, 83, 137, 170, 173, 181, 184 substance use, 195 successful aging, 99, 100, 102, 103, 107, 108, 110, 111, 113 suffering, 127, 169, 170, 239, 240 sugar, 107, 119, 137 suicidal, 151

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

278

Index

suicidal ideation, 151 suicide, 169 summer, 221, 253 superiority, 192 supervisors, 245 supplemental, 124, 248 supplements, 120, 255 support services, 170, 171, 254 Supreme Court, 22, 62, 82 Surgeon General, 82, 91, 92, 96, 167, 184 surgeons, 72 surgery, 72, 84, 85 surgical, 173 surprise, 251, 253 survey statements, 143 survival, 42, 70, 83, 84, 93, 95, 101, 104, 117, 118, 127, 192, 245 survival rate, 70, 84 surviving, 104 survivors, 38, 127 susceptibility, 72, 74, 203, 213 swelling, 193 symbolic, 163 sympathetic, 153 symptoms, 64, 65, 66, 73, 123, 140, 141, 148, 150, 151, 153, 154, 157, 161, 163, 164, 165, 167, 172, 176, 181, 183, 193, 206, 255 syndrome, 74, 155, 205 synthesis, 27, 47

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T TANF, 64 tangible, 245 targets, 13, 18, 92 taxonomy, 59 team members, 118 technician, 210 teens, 45, 193 teeth, 251 telephone, ix, 68, 115, 120, 208 television, 100, 145 temperament, 152, 180 tension, 47, 106, 125, 229 testimony, 34, 38, 41, 42, 43, 49, 104, 175 therapists, 121 therapy, 71, 73, 94, 95, 121, 197, 212, 248, 254, 256, 257 thinking, 30, 32, 49, 99, 108, 125, 163, 207, 224 Third World, 54 threat, 60, 67, 101, 106, 113, 140, 151, 163 threatened, 151 threatening, 66, 106

threats, 99, 139 threshold, 206 tides, 193 time periods, 192 timing, 187, 194, 204 tobacco, 195 tolerance, 64, 139 toxins, 71, 74 tracking, 72, 75, 184 tradition, x, 24, 43, 49, 187, 191, 249, 250, 252 traditional model, 118 training, 11, 58, 64, 121, 122, 251 trait anxiety, 195 traits, 60, 62, 195 transcription, 211 transformation, 59 transition, ix, 87, 147, 155, 156 translation, 26, 161, 179 transplantation, 85 transportation, 85, 165, 193 trauma, 82, 84, 96, 104, 162, 180, 189 traumatic events, 240 travel, 20 trial, 38, 183 tribal, 24 trust, 101, 238 tumors, 70, 76, 83 turbulent, 65 Turkey, 65, 153 type 1 diabetes, 191 type 2 diabetes, 145 Type I error, 200 typhoid, 59

U uncertainty, 105 undergraduate, 121 underinsured, 172 unemployment, 4, 9, 80, 87, 88 unemployment rate, 4 unhappiness, 156, 160 uniform, 101 uninsured, 7, 98, 172 universality, 158, 183, 234 universe, 126 upper respiratory infection, 192 urban areas, 116 urbanization, 84 US Department of Health and Human Services, 77

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,

Index

V vaccination, 124 validation, 43, 62, 180 validity, 102, 117, 126, 157, 160, 161 values, ix, 8, 27, 28, 32, 60, 75, 105, 110, 111, 115, 116, 123, 124, 126, 132, 133, 145, 155, 158, 159, 163, 255 variables, x, 6, 14, 28, 44, 45, 46, 59, 71, 75, 99, 101, 104, 110, 133, 136, 148, 153, 159, 187, 194, 203 variation, 59 vasculitis, 208 vegetables, 124 vessels, 212 veterans, 151 victimization, 38 victims, viii, 89, 97, 98, 143 Vietnam War, 151 violence, 21, 84, 162 visible, 34, 82, 89, 93, 94, 95 vision, x, 45, 87, 207, 211, 212, 213, 214, 221, 224, 225, 227, 228, 229, 233, 234, 235, 239, 240 visual acuity, 212, 213 vitamins, 142 vitreous, 212 vitreous hemorrhage, 212 voice, 6, 25, 26, 34, 41, 42, 49, 211, 217, 232 volunteerism, 99 vulnerability, 28, 32, 40, 69, 72, 104, 112, 155, 156

W

water, 212 weakness, 163, 192, 218 wealth, 45, 111 wear, 225, 226 weathering, 94, 195 weight control, 140 weight gain, 70, 139, 144 weight loss, 119, 141, 161 welfare, 3, 21, 23, 45, 46, 62, 84, 148 wellness, 82, 96, 118, 127, 164 Western countries, 148, 153 Western culture, 105, 149, 153, 154, 155, 156, 159 Western societies, 155, 156, 157, 159 WHO, 82, 96, 162, 182 wisdom, 117, 203 withdrawal, 99, 101, 235 witnesses, 38, 210 wool, 212 word processing, 135 work environment, 45, 66 work roles, 100 working class, 16 working conditions, 117 World Health Organization, 30, 65, 82, 96, 162, 185 World Health Organization (WHO), 82, 162 worldview, 9, 24, 126, 155, 162 writing, 15, 26, 41, 75, 196

Y young adults, 87 young women, 13

Z Zoloft, 152

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waking, 160, 198 walking, 120, 226, 228 Warfarin, 120 warrants, 125

279

Black Women's Health: Challenges and Opportunities : Challenges and Opportunities, Nova Science Publishers, Incorporated, 2009. ProQuest Ebook Central,