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Stigma, Psychological Distress, and Health-Related Quality of Life among Persons Living with HIV/AIDS in the United States

Permanent Link: http://ufdc.ufl.edu/UFE0041164/00001

Material Information

Title: Stigma, Psychological Distress, and Health-Related Quality of Life among Persons Living with HIV/AIDS in the United States
Physical Description: 1 online resource (181 p.)
Language: english
Creator: Vandenberg, Jacob
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2009

Subjects

Subjects / Keywords: aids, discrimination, hiv, stigma
Psychology -- Dissertations, Academic -- UF
Genre: Counseling Psychology thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: The purpose of the present study was to investigate the associations between human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS)-related stigma and both psychological distress and health-related quality of life among persons living with HIV/AIDS (PLWHA) in the United States. In addition, whether these associations are moderated by social support and perceived patient-centered cultural sensitivity in health care experienced was examined. Participants were 193 self-identified PLWHA recruited through HIV/AIDS Internet listservs and groups, and through snowball sampling techniques. Participants anonymously completed a security protected online survey that included instruments to measure the following variables of interest: (a) demographic and medical characteristics, (b) HIV/AIDS-related stigma, (c) psychological distress, (d) social support, (e) health-related quality of life, (f) experiences of social discrimination, (g) perceived patient-centered cultural sensitivity in health care experienced, and (h) social desirability. Consistent with hypotheses, results indicated that level of experiences of social discrimination was related positively and significantly to HIV/AIDS-related stigma. In addition, level of perceived patient-centered cultural sensitivity in health care experienced was related negatively and significantly to HIV/AIDS-related stigma. Exploratory research questions revealed that social support significantly moderated the relationship between HIV/AIDS-related stigma and psychological distress, such that the strength of the association between HIV/AIDS-related stigma and psychological distress was lessened for PLWHA who reported higher levels of social support. Furthermore, perceived patient-centered cultural sensitivity in health care experienced was shown to have a significant moderating effect on the relationship between HIV/AIDS-related stigma and health-related quality of life, such that the strength of the association between HIV/AIDS-related stigma and health-related quality of life was lessened for PLWHA who reported higher levels of perceived patient-centered cultural sensitivity in health care experienced. Significant differences in HIV/AIDS-related stigma scores in association with gender and race but not sexual orientation were also found in the present study. Specifically, women had higher levels of HIV/AIDS-related stigma scores than men and African Americans/Blacks and other races had higher levels of HIV/AIDS-related stigma scores than Caucasian Americans/Whites. However, HIV/AIDS-related stigma scores did not differ significantly for heterosexuals, bisexuals, and gays/lesbians.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Statement of Responsibility: by Jacob Vandenberg.
Thesis: Thesis (Ph.D.)--University of Florida, 2009.
Local: Adviser: Tucker, Carolyn M.
Local: Co-adviser: Moradi, Banafsheh.
Electronic Access: RESTRICTED TO UF STUDENTS, STAFF, FACULTY, AND ON-CAMPUS USE UNTIL 2010-12-31

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2009
System ID: UFE0041164:00001

Permanent Link: http://ufdc.ufl.edu/UFE0041164/00001

Material Information

Title: Stigma, Psychological Distress, and Health-Related Quality of Life among Persons Living with HIV/AIDS in the United States
Physical Description: 1 online resource (181 p.)
Language: english
Creator: Vandenberg, Jacob
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2009

Subjects

Subjects / Keywords: aids, discrimination, hiv, stigma
Psychology -- Dissertations, Academic -- UF
Genre: Counseling Psychology thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: The purpose of the present study was to investigate the associations between human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS)-related stigma and both psychological distress and health-related quality of life among persons living with HIV/AIDS (PLWHA) in the United States. In addition, whether these associations are moderated by social support and perceived patient-centered cultural sensitivity in health care experienced was examined. Participants were 193 self-identified PLWHA recruited through HIV/AIDS Internet listservs and groups, and through snowball sampling techniques. Participants anonymously completed a security protected online survey that included instruments to measure the following variables of interest: (a) demographic and medical characteristics, (b) HIV/AIDS-related stigma, (c) psychological distress, (d) social support, (e) health-related quality of life, (f) experiences of social discrimination, (g) perceived patient-centered cultural sensitivity in health care experienced, and (h) social desirability. Consistent with hypotheses, results indicated that level of experiences of social discrimination was related positively and significantly to HIV/AIDS-related stigma. In addition, level of perceived patient-centered cultural sensitivity in health care experienced was related negatively and significantly to HIV/AIDS-related stigma. Exploratory research questions revealed that social support significantly moderated the relationship between HIV/AIDS-related stigma and psychological distress, such that the strength of the association between HIV/AIDS-related stigma and psychological distress was lessened for PLWHA who reported higher levels of social support. Furthermore, perceived patient-centered cultural sensitivity in health care experienced was shown to have a significant moderating effect on the relationship between HIV/AIDS-related stigma and health-related quality of life, such that the strength of the association between HIV/AIDS-related stigma and health-related quality of life was lessened for PLWHA who reported higher levels of perceived patient-centered cultural sensitivity in health care experienced. Significant differences in HIV/AIDS-related stigma scores in association with gender and race but not sexual orientation were also found in the present study. Specifically, women had higher levels of HIV/AIDS-related stigma scores than men and African Americans/Blacks and other races had higher levels of HIV/AIDS-related stigma scores than Caucasian Americans/Whites. However, HIV/AIDS-related stigma scores did not differ significantly for heterosexuals, bisexuals, and gays/lesbians.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Statement of Responsibility: by Jacob Vandenberg.
Thesis: Thesis (Ph.D.)--University of Florida, 2009.
Local: Adviser: Tucker, Carolyn M.
Local: Co-adviser: Moradi, Banafsheh.
Electronic Access: RESTRICTED TO UF STUDENTS, STAFF, FACULTY, AND ON-CAMPUS USE UNTIL 2010-12-31

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2009
System ID: UFE0041164:00001


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STIGMA, PSYCHOLOGICAL DISTRESS, AN D HEALTH-RELATED QUALITY OF LIFE AMONG PERSONS LIVING WITH HUMAN IMMUNODEFICIENCY VIRUS/ACQUIRED IMMUNE DEFICIENCY SYNDROME (H IV/AIDS) IN THE UNITED STATES By JACOB JOHN VAN DEN BERG A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLOR IDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2009 1

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2009 Jacob J. van den Berg 2

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To my Mother and Father who taught me the value of perseverance, no matter the obstacle 3

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ACKNOWLEDGMENTS It is with great enthusiasm and pride that I thank the many people who have supported me throughout my entire dissertation process. I must first acknowledge all th e encouragement that I received from my family and friends despite th e significant personal cha llenges that they have encountered over the years. In pa rticular, I would like to thank my father, Jacobus F. van den Berg, mother, Marie A. van den Berg, brother, Erik J. van den Berg, sister-in-law, Lisa van den Berg, and nephew, Alexander J. van den Berg for understanding that I would not be available to them as often as they would have liked while I was working on my dissertation. I know that you did not always understand what I was doing, or why I was still in school instead of having a "real" job, but I hope you know I missed you all and that it finally paid off in the end. I would also like to especially thank my life partner, Christopher S. Ch ambers, who despite many latenight conversations of me wanting to give up on this project listened patiently and calmly reassured me that I would ma ke it through by casting away all of my fears and doubts. Your insights and advice on how I shoul d approach the topic of stig ma and discrimination from a sociological perspective were i nvaluable to me. I could not have completed this project without the unwavering love and support of my best fr iend, Denise M. Bonilla, who has always been there for me no matter what and whose wisdom I have always cherished. I greatly value your superior writing and editing skills as well as your assistance with recruiting participants for this study. I would like to thank my d ear friend, Erin P. Moore, who always knows how to cheer me up and continues to be the eternal optimist in my life. I am also extremely grateful for the guidance of my dissertation committee at the University of Florida. I especially would like to express my warmest gratitude to my dissertation chairperson, Dr. Carolyn M. Tucker, who gave me lots of constructive feedback and put forth a great deal of energy into developi ng this research endeavor into an "excellent" project. I must 4

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also thank my other dissertation committee memb ers, Dr. Bonnie Moradi, Dr. Julie Graber, and Dr. Constance Shehan, for their flexibility and patience with me. I appr eciated the combination of your expertise and unique perspectives. I w ould like to particularly thank Dr. Catherine Zimmer at the University of North Carolina at Chapel Hill for her guidance and wisdom on my dissertation. You were always there to listen to me no matter what and were able to understand exactly what I was trying to say. I would also like to acknowledge Dr. Kathleen J. Sikkema, Dr. Rae Jean Proescholdbell, and Dr. Baishakhi B. Taylor at Duke University who read early versions of my dissertation and gave me helpful feedback and support along the way. Last, but not least, I would like to thank all of the indivi duals who participated in this research and for whom I would have not been able to complete th is project without their assistance. I hope and pray that the information collected from this st udy will directly benefit all persons living with human immunodeficiency virus/ acquired immune deficiency syndrome (HIV/AIDS) to experience happier and more fulfilled lives. As I embark on the next chapter of my professional career, I will take with me a ll the lessons that I have lear ned in graduate school and the knowledge that I have acquired from completi ng this dissertation project. 5

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TABLE OF CONTENTS page ACKNOWLEDGMENTS ...............................................................................................................4 LIST OF TABLES ...........................................................................................................................9 LIST OF FIGURES .......................................................................................................................10 LIST OF ABBREVIATIONS ........................................................................................................11 ABSTRACT ...................................................................................................................................13 CHAPTER 1 INTRODUCTION ................................................................................................................ ..15 The Acquired Immune Deficiency Syndrome (A IDS) Epidemic in the United States (US) .....................................................................................................................................15 Calls for Action to Address the AIDS Epidemic in the US ....................................................16 The Concept of Stigma ...........................................................................................................18 The Concept of Discrimination ..............................................................................................19 Interrelated Com ponents of Stigma ........................................................................................20 Representations of Stigma and Discrimination ......................................................................21 Why Stigmatization and Discrimination May Occur .............................................................24 How Stigmatization and Discrimi nation Are Likely Maintained ...........................................26 Human Immunodeficiency Virus (HIV)/AIDS -Related Stigma and Discrimination .............27 Defining HIV/AIDS-Related Stigma ......................................................................................29 Conceptual Frameworks for Unde rstanding HIV/AIDS-Related Stigma ..............................29 Psychological Distress ............................................................................................................33 Health-Related Quality of Life ...............................................................................................34 Social Support .........................................................................................................................34 Perceived Patient-Centered Cultural Sensitivity in Health Care Experienced .......................36 Perceived Discrimination in Health Care and Demographic Characteristics .........................37 Statement of the Problem ........................................................................................................38 Purpose of the Present Study ..................................................................................................38 Hypotheses and Explorat ory Research Questions ..................................................................39 2 REVIEW OF THE LITERATURE ........................................................................................41 Dimensions of HIV/AIDS-Related Stigma ............................................................................42 Assessing HIV/AIDS-Related Stigma ....................................................................................44 Impact of HIV/AIDS-Related Stigma on Psychological Distress ..........................................45 Impact of HIV/AIDS-Related Stigma on Health-Related Quality of Life .............................48 Patient-Health Care Provider Relationshi p for Persons Living with HIV/AIDS (PLWHA) ............................................................................................................................50 6

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Patient-Centered Culturally Sensitive Health Care ................................................................51 Social Support, HIV/AIDS-Related Stigma, and Psychological Distress ..............................53 Social Support, HIV/AIDS-Related Stigma, and Health-Related Quality of Life .................54 Demographic Characteristics a nd HIV/AIDS-Related Stigma ...............................................55 Summary of Literature Review ..............................................................................................56 Model of Hypothesized Relationships ....................................................................................57 3 METHOD ...................................................................................................................... .........59 Participants .............................................................................................................................59 Procedure ................................................................................................................................61 Participant Recruitment ...................................................................................................61 Data Collection ................................................................................................................62 Instruments .............................................................................................................................64 Demographic and Medical Information Variables .................................................................64 HIV/AIDS-Related Stigma Measures .....................................................................................64 Psychological Distress ............................................................................................................67 Social Support .........................................................................................................................68 Health-Related Quality of Life ...............................................................................................69 Social Discrimination .............................................................................................................70 Patient-Centered Culturally Sensitive Health Care ................................................................71 Social Desirability ..................................................................................................................72 4 RESULTS ..................................................................................................................... ..........76 Preliminary Analyses ..............................................................................................................76 Descriptive Statistics for the Major Investigated Variables ...................................................77 Results of Preliminary Pearson Correlations ..........................................................................79 Results of Analyses to Test Hypotheses 1 and 2 ....................................................................82 Hypothesis 1 ....................................................................................................................82 Hypothesis 2 ....................................................................................................................83 Results of Analyses to Test Explor atory Research Questions 1, 2, and 3 ..............................83 Exploratory Research Question 1 ....................................................................................83 Exploratory Research Question 2 ....................................................................................87 Exploratory Research Question 3 ....................................................................................90 5 DISCUSSION .................................................................................................................. .....103 Summary and Interpretation of Findings ..............................................................................103 Correlations Among Investigat ed Variables of Interest ................................................104 Correlations Among Investigated Variables of Interest and Demographic Variables ..108 Hypotheses 1 and 2 ...............................................................................................................114 Hypothesis 1 ..................................................................................................................114 Hypothesis 2 ..................................................................................................................115 Exploratory Research Questions 1, 2, & 3 ...........................................................................115 Exploratory Research Question 1 ..................................................................................115 Exploratory Research Question 2 ..................................................................................116 7

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Exploratory Research Question 3 ..................................................................................117 Limitations and Directions for Future Research ...................................................................117 Sampling Limitations ....................................................................................................118 Survey Limitations ........................................................................................................118 Research Design Limitations .........................................................................................119 Conclusions ...........................................................................................................................120 Implications for Public Health Educators, Health Care Professionals, and Policymakers ...120 APPENDIX A INFORMED CONSENT ......................................................................................................125 B DEMOGRAPHIC AND MEDICAL IN FORMATION QUESTIONNAIRE ......................126 C ACQUIRED IMMUNE DEFICIENCY SYNDROME (AIDS) STIGMA MEASURE (ASM) ......................................................................................................................... ..........133 D MENTAL HEALTH INVENTORY (MHI) .........................................................................137 E MEDICAL OUTCOMES STUDY SOCIAL SUPPORT SURVEY (MOSS-SSS) .............143 F WORLD HEALTH ORGANIZA TION QUALITY OF LIFEBREF (WHOQOL-BREF) .145 G EXPERIENCES OF SOCIAL DISCRIMINATION (ESD) .................................................148 H HUMAN IMMUNODEFICIENCY VIRUS (H IV) STIGMA SCALE-REVISED (HSSR) ..........................................................................................................................................151 I HIV STIGMA SCALE (HSS) ..............................................................................................153 J MARLOWE-CROWNE SOCIAL DESIRABILI TY SCALE SHORT FORM C (M-CSDS-SFC) .................................................................................................................. ..154 K TUCKER-CULTURALLY SENSITIVE HEALTHCARE INVENTORY-PATIENT FORM (T-CSHI-PF) .............................................................................................................155 L DEBRIEFING FORM ..........................................................................................................163 M RECRUITMENT FLYER ....................................................................................................164 REFERENCES ............................................................................................................................165 BIOGRAPHICAL SKETCH .......................................................................................................180 8

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9 LIST OF TABLES Table page 3-1 Demographic characteristics of the final participant sample .............................................74 3-2 Medical characteristics of the final participant sample ......................................................75 4-1 Descriptive data for th e major variables of interest ...........................................................92 4-2 Pearson correlations for the major investig ated variables includi ng social desirability ....93 4-3 Partial correlations to test hypothesis 1 and hypothesis 2 controlling for age, gender, race, and sexual orientation ................................................................................................94 4-4 Moderating effect of social support (centered) on the re lation between stigma (centered) and psychological distre ss to examine research question 1 ..............................95 4-4 Moderating effect of social support (centered) on the re lation between stigma (centered) and psychological distress to examine research question 1 (continued) ..........96 4-5 Moderating effect of so cial support (centered) and cultural sensitivity (centered) on the relation between stigma (centered) a nd quality of life to examine research question 2 ...........................................................................................................................97 4-5 Moderating effect of soci al support (centered) and cultural sensitivity (centered) on the relation between stigma (centered) a nd quality of life to examine research question 2 (continued) ........................................................................................................98 4-5 Moderating effect of social support (cen tered) and cultural sensitivity (centered) on the relation between stigma (centered) a nd quality of life to examine research question 2 (continued) ........................................................................................................99 4-6 Multiple linear regression analysis with stigma and demographic variables to examine research question 3 ............................................................................................100

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LIST OF FIGURES Figure page 2-1 The patient-centered culturally se nsitive health care (PC-CSHC) model .........................57 2-2 Hypothesized relationships among variables of interest. ...................................................58 4-1 Plot of regression lines showing how th e significant interaction between social support (centered) and stigma (centere d) influenced psychological distress ...................101 4-2 Plot of regression lines showing how th e significant interaction between cultural sensitivity (centered) and stigma (c entered) influenced quality of life ............................102 10

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LIST OF ABBREVIATIONS AB Assessment Battery AIDS Acquired Immune Deficiency Syndrome ANCOVA Analysis of Covariance ASM AIDS Stigma Measure CD4 Cluster Designation 4 (T help er cells are responsible for coordinating much of the imm une response. HIVs preferred targets are cells that have a docking molecule called cluster designation 4 on their cells). CDC Centers for Disease Control and Prevention DMIS Demographic and Medical Information Questionnaire ESD Experiences of Social Discrimination HAART Highly Active Antiretroviral Therapy HIV Human Immunodeficiency Virus HSS-P HIV Stigma Scale Perceived HSS-R HIV Stigma Scale Revised IHS Internalized HIV Stigma IDU Injection Drug Use IP Internet Protocol MCSDS-SFC Marlowe-Crowne Social Desirability Scal e-Short Form C MHI Mental Health Inventory MOS-SSS Medical Outcomes Study-Social Support Survey MTM Male-to-Male PC-CSHC Patient-Centered Culturally Sensitive Healthcare 11

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PLWHA Persons Living with HIV/AIDS T-CSHI-PF Tucker-Culturally Sensitive Healthcare Inventory-Patient Form UN United Nations UNAIDS Joint United Nati ons Programme on HIV/AIDS US United States WHO World Health Organization WHOQOL-BREF World Health Organization Quality of Life-BREF 12

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13 Abstract of Dissertation Pres ented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy STIGMA, PSYCHOLOGICAL DISTRESS, AN D HEALTH-RELATED QUALITY OF LIFE AMONG PERSONS LIVING WITH HUMAN IMMUNODEFICIENCY VIRUS/ACQUIRED IMMUNE DEFICIENCY SYNDROME (H IV/AIDS) IN THE UNITED STATES By Jacob John van den Berg December 2009 Chair: Carolyn M. Tucker Major: Counseling Psychology The purpose of the present study was to inve stigate the associations between human immunodeficiency virus/acquired immune defici ency syndrome (HIV/AID S)-related stigma and both psychological distress and health-relate d quality of life among persons living with HIV/AIDS (PLWHA) in the United States. In addition, whether these associations are moderated by social support and perceived patient-centered cu ltural sensitivity in health care experienced was examined. Participants were 193 self-i dentified PLWHA recruited th rough HIV/AIDS Internet listservs and groups, and through snowball samp ling techniques. Participants anonymously completed a security protected online survey th at included instruments to measure the following variables of interest: (a) dem ographic and medical characteristic s, (b) HIV/AIDS-related stigma, (c) psychological distress, (d) social support, (e) health-related quali ty of life, (f) experiences of social discrimination, (g) perceived patient-c entered cultural sensitivity in health care experienced, and (h) social desirability. Consistent with hypotheses, re sults indicated that level of experiences of social discrimination was related positively and signifi cantly to HIV/AIDS-related stigma. In addition,

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level of perceived patient-centered cultural sensi tivity in health care experienced was related negatively and significantly to HIV/AIDS-related stigma. Exploratory research questions revealed that social suppor t significantly moderated the relationship between HIV/AIDS-related stigma and psychological distress, such that the strength of the association between HIV/AIDS-related st igma and psychological distress was lessened for PLWHA who reported higher levels of social support. Furthermor e, perceived patient-centered cultural sensitivity in health care experienced wa s shown to have a significant moderating effect on the relationship between HIV/AIDS-related stigma and health-related quality of life, such that the strength of the association between HIV/AIDS-related stigma and health-related quality of life was lessened for PLWHA who reported higher levels of perceived patient-centered cultural sensitivity in health care experi enced. Significant differences in HIV/AIDS-related stigma scores in association with gender and race but not sexu al orientation were al so found in the present study. Specifically, women had higher levels of HI V/AIDS-related stigma scores than men and African Americans/Blacks and other races had highe r levels of HIV/AIDS-related stigma scores than Caucasian Americans/Whites. However, HI V/AIDS-related stigma scores did not differ significantly for heterosexuals, bisexuals, and gays/lesbians. 14

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CHAPTER 1 INTRODUCTION The Acquired Immune Deficiency Syndrome (AID S) Epidemic in the United States (US) The Centers for Disease Control and Prevention (CDC) in the United States (US) reported that at the end of 2003 between 1,039,000 and 1,185,000 adults and children were currently living with human immunodeficiency virus (HIV ) or acquired immune deficiency syndrome (AIDS), and that about 24-27% of these indi viduals were undiagnosed and unaware of their serostatus.1 By the end of 2005, it was estimated that 341,524 males, 126,964 females, and 6,726 children (<13 years of age at diagnosis) were all living with HIV or AIDS in this country.2 In particular, Americans 40-44 years old (101,027) and non-Hispanic Bl acks (224,815) accounted for the highest numbers of persons living with HIV or AIDS (PLWHA). Furthermore, male-tomale (MTM) sexual contact continued to be th e number one mode of transmission followed by high risk heterosexual contact injection drug use (IDU), a nd MTM sexual contact and IDU combined (CDC, 2007). Although the number of PLWHA is high in th e US, current empirical data documenting the experience of PLWHA, remain limited. In part icular, research on stigma and discrimination is greatly warranted as they have been identified as major barriers to satisfactory health care and quality of life among PLWHA (Deacon, 2006). Despit e some recent attempts to elucidate the processes by which stigma and discriminati on impacts the health and well-being of PLWHA (e.g., Busza, 2001; Deacon, 2006; Link & Phelan, 2001), pleas for dealing with stigma and discrimination have been made over the last 20 y ears by researchers, social activists, and public health officials around the world. In the next section, a discussion of the nature and content of 1 These are the most recent statistic s reported by the CDC to date. 2 CDC notes that these estimates of the number of persons living with HIV/AIDS were for 33 states and US dependent areas with confidential na me-based HIV infection reporting. 15

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these pleas/concerns and how th e present study best addresses a gap in current HIV/AIDSrelated stigma research is presented. Calls for Action to Address the AIDS Epidemic in the US Calls for combating the deleterious e ffects of HIV/AIDS-related stigma and discrimination have been made since the mid-1980s In a statement given to the United Nations General Assembly in 1987, the Founding Director of the World Health Organization's Global Programme on AIDS (known today as the Join t United Nations Programme on HIV/AIDS or UNAIDS), Jonathan Mann, identified three phases of the AIDS epidemic3 in any community. According to Mann (1987), the first phase is char acterized by the silent and unnoticeable spread of HIV throughout communities over many years w ithout being widely perceived or understood. The second phase includes, after some unspecifi ed amount of time, the development of AIDSrelated illnesses (i.e., Kaposi's sarcoma and pneumocystis carinii pneumonia) that arises as a direct result of HIV infection. The third and fi nal phase is marked by the social, cultural, economic, and political responses to AIDS, incl uding the stigmatization and discrimination of PLWHA (Mann, 1987). Although this proclamation by Mann was an ear ly identification of the potential harmful consequences of HIV/AIDS-related stigma and discrimination, very little was done to address this problem over the next decade. In fact, it to ok approximately 13 years before public health officials and researchers attempted to contend wi th this enduring predicament and for it to be seen as a continuing challenge to fighting the AIDS pandemic.4 In 2000, the Executive Director of UNAIDS, Peter Piot stated in an address to the agency's Programme Coordinating Board that, "effectively addressing stigma removes what stil l stands as a roadblock to concerted action, 3 The CDC's official definition of an epidemic is: The occu rrence of more cases of disease than expected in a given area or among a specific group of people over a particular period of time. 4 A pandemic is a very extensive epidemic, like a plague, that is prevalent in a country, continent, or the world. 16

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whether at the local community, national or glob al level" (Piot, 2000, p. 2) A couple of years later, the theme for the 2002-2003 World AIDS Ca mpaign focused solely on that of HIV/AIDSrelated stigma and discrimination, demonstratin g the resurgence and urgency of this topic. Secretary General of the United Nations, Kofi Annan in his message on World AIDS Day in 2003 captured the importance of contending with HIV/AIDS-related stigma and discrimination by proclaiming that, No progress will be achieved by being timid, refusing to face unpleasant facts, or prejudging our fellow human beings still less by stigmatizing people living with HIV/AIDS. Let no one imagine that we can protect ourselves by building barriers between 'us' and 'them.' In the ruthless wo rld of AIDS, there is no us and them. And in that world, silence is deathJoin me in tearing down the walls of silence, stigma and discrimination that surround the epidem ic. Join me, because the fight against HIV/AIDS begins with you (Annan, 2003, p. 1). It is this fear and ignorance of difference th at creates a separation between individuals or groups (commonly referred to as the "us" versus "them" dichotomy) that continues to prevent further progress from being made in the fi ght against HIV/AIDS. Thus, understanding HIV/AIDS-related stigma and discrimination, why it occurs, and how to prevent it from happening is vital to stopping th e spread of HIV and improving th e lives of those infected and affected by this disease. In order to fully comprehend how and why HIV/AIDS-related stigma and discrimination arises in any community, it is first important to explore the general c oncepts of stigma and discrimination. In the next section, the ways in which stigma and discrimination have been defined and conceptualized in the empirical literature and pop ular discourse is presented. Second, an illustration of stigma and discrimi nation from American Literature and some historical representations of stigma and discrimination over time are discussed. Third, an identification of how HIV/AIDS-related stigma and discrimination has been described in the extant literature as the epidemic has evolved in the US is provided. Fourth, the reasons why 17

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stigmatization and discrimination may occur among PLWHA today are explored. Fifth, two conceptual frameworks for understanding HIV/AIDS-related stigma and discrimination are identified. The Concept of Stigma In both popular discourse and the empirical literature, stigma is typically understood to be a "mark of disgrace." This understanding of stigma can be traced back to Erving Goffmans (1963) explanation of stigma in his landmark book entitled, Stigma: Notes on the Management of Spoiled Identity as an "attribute that is deeply discredited" and that reduces the bearer "from a whole and usual person to a tainted, disc ounted one" (Goffman, 1963, p.3). Building upon Goffmans definition, some authors also refer to an interrelated aspect of stigma like rejection and stereotyping (Link & Phelan, 2001). Over the last three decades, several other conceptualizations of stigma have been identified in the extant literature. For example, Jones, Farina, Hastorf, Markus, Miller, and Scott (1984) argued that stigma can be seen as a relationshi p between an "attribute and a stereotype to produce a definition of stigma as a mark that link s a person to undesirable ch aracteristics" (Jones et al., 1984, p. 5). Similarly, Stafford and Scott (1986) noted that stigma is "a characteristic of persons that is contrary to a nor m of a social unit" where a norm is defined as "a shared belief that a person ought to behave in a certain way at a certain time" (Stafford & Scott, 1986, p. 80). In the same way, Crocker, Major, and Steele (1 998) indicated that "s tigmatized individuals possess (or are believed to posse ss) some attribute, or charact eristic, that conveys a social identity that is devalued in a particular social context" (Crocker et al., 1998, p. 505). Although each of these conceptu alizations has a slightly different emphasis in there explanation of stigma, they are a ll focused on the social classifica tion of the individual. In other words, these definitions center on others' perceptions of the individual and the social 18

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consequences that result from such perceptions at the micro-level. Thus, stigma is a trait, characteristic or state of being that is viewed as fundamental to the person and discrimination is the result of others' treatment of the person due to that stigmatized classification5. Persons who hold negative attitudes or who en act stigmatizing or discriminatory behavior have been referred to as perpetrators of stigma and discrimination (Herek & Capitanio, 1999; Sayce, 1998). In contrast, those with or associated with the condition (e.g., HIV) or the behavior (e.g., promiscuous sex) are considered the ta rgets of stigma and discrimination. The Concept of Discrimination Discrimination has been defined as "overt ne gative and unequal treatment of the members of a social group or stratum solely because of their membership in that group or stratum" (Anderson & Taylor, 2006, p.278). For instance, person or group X labeling and stereotyping of person or group Y leads person or group X to enga ge in some form of overt discrimination directed at person or group Y, such as refusing to rent her or him an apartment, rejecting her or his job application, or declining her or his me mbership into an orga nization. In addition, the experience of discrimination is commonly based u pon a devalued status position in such social categories as age, race, ethnicit y, gender, religion, sexua l orientation, disability, health status, national origin, and political affiliation. Besides the discrimination that is enacted by one person or group against another person or group, there is also structural discrimination (Link, 2001). One example of structural discrimination would be institutional racism wh ere on-going and regular or ganizational practices work to the disadvantage of racial minority groups even in the abse nce of individual prejudice or discrimination. When hiring, employers who are more often than not male, heterosexual, white, 5 I conceptualize discrimination as the by-product of stigma. In other words, discrimination is the end result of stigma. 19

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and affluent tend to rely on the personal hiri ng recommendations of colleagues or acquaintances that are similar in terms of their characteris tics for hiring decisions. Thus, persons of color applying for employment having been excluded from these private social networks tend to be at a greater disadvantage for job oppor tunities than their white count erparts (Fernandez, Castilla, & Moore, 2000; Fernandez & Weinberg, 1997; Royster, 2003). In deed, simila r kinds of structural discrimination are present for other stigmatized groups as well. Interrelated Components of Stigma In their conceptualization, Link and Phelan (2001) extended the definition of stigma originally proposed by Goffman and others to include the convergence of five interrelated components labeling, stereotyping, separation, status loss, and disc rimination that are used to establish a power differential between non-stigmatiz ed and stigmatized indi viduals. First, they articulated that in most societies people typical ly distinguish and label human differences that matter socially. For example, currently in the US issues of race and gender are particularly salient areas in which naming difference is consider ed socially significant, and as such these are common themes in the latest race for the presidency. Second, they argued that a stereotype is formed as a result of linking a person or gr oup to a set of undesirable characteristics. For instance, a common stereotype held in American society is that men have stronger mathematical abilities than women. Third, they contended that after social labeling and stereotyping occurs, a separation of "us" from "them" eventually de velops. That is, in many societies there are individuals who are a part of th e in-group ("us") and those that are set ap art into the out-group ("them"). Fourth, they asserted that after the first three interre lated components (i.e., labeling, stereotyping, and separation) have been esta blished, a justification is then formed by nonstigmatized individuals for devalu ing, rejecting, and excluding stigmatized persons who, in turn, experience status loss and discrimination (the last two interrelated components) as a 20

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consequence. For example, people perceived to be Arab experience racial profiling at airports under the rationale that these pe rsons must be terrorists. While some authors have challenged and expanded upon these varied definitions and conceptualizations of stigma and discrimination, most scholars and researchers investigating this topic today agree that the existence and prevalence of stigma and discrimination throughout history is clearly evident (Heat herton, Kleck, Hebl, & Hull, 2000) In the next section, a vivid representation of stigma and discrimination from American literature and history are offered to highlight the experience of these concepts. In addition, a connection is made between these examples and Link and Phelan's (2001) conceptua lization of stigma and discrimination. Representations of Stigma and Discrimination Perhaps one of the most notable examples of the depiction of stigma and discrimination from American Literature is the story of Hester Prynne in Nathanial Hawthorne's (1850) novel, The Scarlet Letter In this book, Hester is forced to w ear a prominent scarlet letter "A" on her clothes over her bosom as a mark to symbolize he r crime of adultery a nd having a child out of wedlock. In addition to displaying the scarlet letter, she also e xperiences public shaming in the form of verbal and physical abuse for her sin of ha ving a secret affair with the town minister. In fact, the first part of her sentencing is to sta nd on a scaffold for public viewing for three hours in the middle of the towns square for all to chastise her. In the mid-1600s Puritan society of Boston, Massachusetts portrayed by Hawthorne, Hester is especially castigated by the women of the colony. Hawthorne vi vidly illustrates their smugly pious attitude towards Hest er when he writes that some of the women thought she should be, "scalded with a hot iron a pplied to her forehead," bran ding her as an immoral woman. Despite Hester's apparent humility and refusal to strike back at the community, she actually resents and inwardly rebels against the vici ousness of her persecutors by saying nothing and 21

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internalizing her feelings. Ultimately, she becomes a living symbol of sin to the townspeople, who view her not as an i ndividual but as the embodime nt of evil in the world. Although banished by this society to live her life forever as a social outcast, Hester's skill in needlework is highly sought after by the sa me community members most appalled by her past immoral behavior. However, they deem their desire for her work as almost charity, as if they are doing her a favor in having her sew outfits for them. Even though she is asked by the townspeople to create clothing to be worn at official ceremoni es and by the fashionable women of the town, she is never allowed to make garments for weddings because it is believed that she might contaminate the sacredness of marriage were she to do so. In essence, the character of Hester is mean t to be understood as the embodiment of "the sinner." Through the towns treatment of her, we are given a cri tical look at the effect of public scorn on human nature. Hester goes from being a radiant beauty before her condemnation to a dreary and uninspired person thr oughout the course of the novel. She is seen by the townspeople as having fallen from grace, a culprit who deserv es the ignominy of her sins. Hester contends with her recognition of the letter's symbolism just as the community members struggle with their moral choices. The irony is that the Puritans st igmatize her with the mark of her sin and, in so doing, reduce her to a dull, lifeless woman whose char acteristic color is gr ay and whose vitality and femininity are suppressed. Hawthorne's description of stigma and the pr ocess of discrimination are consistent with Link and Phelan's (2001) conceptualization presente d earlier. First, Hester is labeled as an adulterer for having a clandestine affair and il legitimate child (Labeling). Second, stereotypes about her are formed by the townspeople immedi ately after her actions have been discovered (Stereotyping). Third, a separation between her and the community members is seen through her 22

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sentence forcing her to exist on the fringes of society (Separation). Fourth, although she is allowed to make some clothes for the townspeo ple, she is restricted from making anything related to a wedding (Status Lo ss and Discrimination). Besides Hawthorne's vivid illustration of s tigma and discrimination, literature abounds with many others. For example, Dickens' Oliver Twist powerfully depicts stigma and discrimination attached to poverty in the eighteenth century. Shaw's Pygmalion written in the early twentieth century, d eals with the stigma connected to so cial class in Victorian England. The American writer Theodore Dreiser portrays the fa te of single women in the nineteenth century in his novel, Jennie Gerhardt Finally, stigma that engulfs a whole family is a theme that Steinbeck forcefully explores in th e twentieth-century novel, The Grapes of Wrath In addition to literary depictions of stigma a nd discrimination, we can also find historical representations of these concepts. It is these historical examples that confirm the existence of stigma and discrimination. During the Second Worl d War in Nazi Germany, the Nazis devised a classification system for concentration camp prisone rs in order to quickly identify the reasons why persons had been imprisoned at the camp. Prim arily represented as inverted triangles sewn on jackets and shirts of the prisoners, these ma ndatory badges had specific meaning indicated by their color and shape. For instan ce, male prisoners in concentration camps who were sent there because of their sexuality were forced to di splay an upside-down pink triangle on their prison uniforms as a badge to denote their homosexuality or bisexuality (Plant, 1988). Similarly, Jews were required to wear the Star of David re presented as two superimposed yellow triangles, women jailed for "anti-social behavior" (e.g., lesbians, prostitutes, or women who used birth control) had to display a revers ed black triangle, and political prisoners (e.g., social democrats, anarchists) had to wear an upturned red triangl e on their garments. Also customary in the 23

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classification system were combinations of tria ngles put together as a way to signify multiple identities. For example, it would be common to see prisoners with at least two and as many as six markings of categorization. Furthermore, some groups had to put letter insignia (i.e., "P" for Poles or "B" for Belgians) on their triangles to designate their country of origin (Plant, 1988). Long before the classification system for pr isoners was devised by the Nazis, historians have documented what has been noted as the origin of the term "stigma" in Ancient Greece (Dovidio, Major, & Crocker, 2000). In an effort to ensure that their valu able property would be safe and runaway slaves would be returned to th eir owners, the Greeks tattooed their slaves with a pointed instrument. Such a device pricked the skin and made a mark called a "stigma;" coming from the Greek word "stig," which means "to pr ick" (Harvey, 2001). Centur ies later this process of branding or marking one's slaves in order to denote them as property would be carried over to American society and the treatment of African slaves. Although these examples provide a context for how stigmatization and discrimination had occurred and been discussed in the past, it is less clear as to why stigmatization and discrimination continues to occur today. In the ne xt section, the process by which stigmatization and discrimination may take place is identified. In addition, an exploration of how stigmatization and discrimination are likely maintained in most so cieties and a brief review of the literature on HIV/AIDS-related stigmatization and discrimination in the US is presented. Why Stigmatization and Di scrimination May Occur Link and Phelan (2001) provided a rationale as to why stigmatization and discrimination may surface. In most societies, they contended, a status hierarchy emerges in order to enforce order and control. When a person is connected to an unfavorable trait (e.g., a life threatening illness, physical handicap, or homosexuality), it dimi nishes his or her position in the eyes of the stigmatizer. In most cases, a downward placement of a person on a status hi erarchy is an almost 24

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immediate outcome of successfully applying negativ e labels and stereotype s to that individual. Once the stigmatized persons' position has been re duced on that social hierarchy, discrimination and social inequalities are likely to be produ ced by the stigmatizer and experienced by the stigmatized. Thus, a lower position on the status hierarchy can have a cascade of negative effects on all manner of opportunities (e.g., access to jo bs, housing, education, and healthcare) for the stigmatized person. In many countries, stigmatization is often used as a way to marginalize, exclude, and exercise control over persons who are considered aberrant or deviant according to the established social norms of a given society. When the gene ral public perceives something as unavoidable and unchangeable (like HIV or AIDS), stigma a nd discrimination are likely to develop as a common reaction to that perceive d threatening agent. Even th ough certain marginalized groups experienced societal rejection prior to th e development of HIV/AIDS based upon other stigmatized attributes (e.g., race, sexual orientation, and social class), the disease serves to further alienate and ostracize those persons. In this way, many societies continue to relinquish themselves from the responsibility of caring fo r and looking after such stigmatized populations (UNAIDS, 2000). Fundamentally, stigmatization and discriminatio n are ways to keep order over a person or a group of individuals who are deemed to be a threatening force for the purposes of controlling these "uncontrollable" persons. However, unde rstanding why stigmatization and discrimination occur is only one piece of the puzzle required to eradicate these problems from society. Hence, it can be argued that another important part of erasing stigmatization and discrimination from humanity is to understand how these problems are generally maintained in any society. 25

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How Stigmatization and Discrimination Are Likely Maintained Once a cultural stereotype is instituted, it can impact stigmatized persons in significant ways that do not involve obvious forms of discriminatory behavior on the part of people in the immediate presence of the stigmatized person. One way to explain how stigmatization and discrimination are maintained in most societies is through a combination of labeling theory and conflict theory. Accordin g to labeling theory (Becker, 1963), pe ople or groups are able to impose a label of "deviant" on certain ot her members of society that are viewed as "outsiders" to that society. Labeling theory specifically focuses at tention on the process by which individuals are marked as deviant rather than on the nature of their behavior. In this way, a persons reaction to another individual or group, not th e action itself, produces devian ce as a result of the labeling process. Emerging from studies of social change and or der, conflict theory ha s become one of the main schools of thought used in sociological study. Borrowing from the social theories of Karl Marx, this body of work asserts that conflict, not equilibrium a nd order, defines existing social arrangements. This conflict, or competition fo r dominance, occurs am ong opposing social status groups (e.g., gender, race, class, etc.), ultimately resulting in the domination of subordinate groups through power, authority, and coercion. Domi nant groups maintain their status position by creating and enforcing the social rules for su ccess and opportunity; en suring that the powerful continue to hold a monopoly on social power, privilege, and au thority (Anderson & Taylor, 2006). Linked with conflict theory, labe ling theory can explain how th ose with the power to label someone as deviant and to impose sanctions ex ert greater power in determining deviance. Undeniably, once the stamp of deviance is app lied to any individual or group, it is extremely difficult for the labeled person to recover a non-deviant identity. For example, when someone is 26

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diagnosed as being mentally ill by a mental health professional, a label in the form of a diagnosis is placed on that person that is oftentimes diff icult to remove after it has been made. Moreover, during the socialization process in most cultures, children learn at an early age what it means to be mentally ill (Angermeyer & Matschinger, 1996). Once established, people's conceptions become a lay theory of what it means to have a mental illness (Furnham & Bower, 1992). Consequently, most individuals fo rm negative preconceived notions th at if he or she is mentally ill, others will reject him or her. Negative be liefs about mental illness have an especially poignant relevance for a person who develops mental illness because the possibility of devaluation and discrimination then becomes persona lly relevant. Presumably, if this conception of mental illness becomes a part of an indivi dual's worldview, it could potentially have dire psychological consequences for that person. Although these theories may explain why stigma tization and discrimination continues to be maintained today, it is important to also identify what we al ready know about how PLWHA have experienced stigma and discrimination in the US. In the next section, a historical context for the emergence of HIV/AIDS-related stigma and disc rimination is provided. In addition, a definition of HIV/AIDS-related stigma a nd discrimination by some of th e leading scholars (e.g., Herek, Widamin, & Capitanio) in th e field is presented. Human Immunodeficiency Virus (HIV)/AIDS -Related Stigma and Discrimination Since the beginning of the HIV/AIDS epid emic, PLWHA and the social groups (e.g., homosexuals, injection drug users, and racial or ethnic minoriti es) to which they are often associated have been stigmatized and discri minated against worldwide (Herek & Capitanio, 1993; Herek & Glunt, 1988; Here k, Capitanio, & Widamin, 2002; Mann, Tarantola, & Netter, 1992). In the early 1980's, the disease was pr edominately found among White gay men in Los Angeles and New York City (Herek & Capitani o, 1999). Given its strong connection with the 27

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gay community, HIV/AIDS as it is known today, was originally refe rred to as "gay cancer," "gay plague," "gay disease," or "gay -related immune defi ciency." Consequently, the American public originally believed that HIV-inf ected individuals should be quarant ined or tattooed to mark their HIV serostatus (Blendon & Donelan, 1988; Singer, Rogers, & Corcoran, 1987; Stipp & Kerr, 1989). As noted earlier, stigma has of ten been revealed in most societies through discrimination and physical violence against members of a stigmatized group. For PLWHA, discrimination can occur in many different forms, including but not limited to, being fired from ones job, not being offered housing opportunities, or ina ccessibility of healthcare. Physical violence might consist of hitting, beating up, stabbing, or even killing some one because of their HIV serostatus. Moreover, some individuals may also express negative attit udes toward PLWHA in sub tle or indirect ways. Such statements as, "I don't like that person because they seem to be sick all of the time" or "I'm scared to be around him/her because I don't want to catch what he/she has," are prime examples of such implicit attitudes (Herek, 2002, Herek et al., 2002, Zierler, Cunningham, Andersen, Shapiro, Nakazon, Morton et al. 2000). However, people may also be more direct in their expressions of di scomfort and avoidance of PLWHA. For example, some individuals may still have the false assumption that HIV/AIDS is only a "homosexual disease" and that if they avoid all gay persons they will be safe from harm. Others have conveyed more hostile forms of discrimination, such as Fred Phelps, a Baptist minister who was well-known for preaching at gay pride parades and the funerals of persons who have died of AIDS-related illnesses with sloga ns and banners proclaiming, "God hates fags," "AIDS cure fags," "Fags die, God laughs." Fu rthermore, some people may support policies to alienate PLWHA from the rest of the population (Herek & Capitanio, 1997). 28

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Defining HIV/AIDS-Related Stigma In recent years, Herek, Widamin, and Cap itanio (2005) defined AIDS-related stigma6 as the "social devaluing of people perceived to have AIDS or HIV, as well as the individuals, groups, and communities with which they are as sociated" (Herek et al., 2005, p.16). In their work, these authors indicated that AIDS-related stigma not only effects people perceived to have HIV or AIDS but also impacts the social groups to which these individuals are typically affiliated. Thus, the experience of stigma not only affects PLWHA but anyone or anything viewed as an extension of them. This is evid ent in the different reactions that result from knowledge of how one may have contracted HIV. For instance, a gay man with the disease will be viewed less sympathetically than a heterosexu al woman who is presumed to have contracted HIV from her unfaithful partner. Ultimately, th e assumption may be that the gay man deserved what he got, whereas the heterose xual woman is a victim of her unfortunate circumstance (Herek & Capitanio, 1999). Two conceptual framewor ks for understanding HIV/AIDS-related stigma that may also explain this divergen t response are presented below. Conceptual Frameworks for Understa nding HIV/AIDS-Related Stigma As previously discussed, Goffman (1963) is widely credited for conceptualizing and creating a framework for the study of stigma. In his analysis, he contended that stigma is generally manifested by the public's perception of or attitudes towards, a person for possessing an "undesirable difference" that is inconsistent with what that particular society believes constitutes a "normal" individual. Thus, someone who is deemed to be a "blemished person" because of a particular defect (i.e., physically ha ndicapped) is seen as less than "normal" (i.e., able-bodied persons) in the eyes of that society. Once that "d ifference" has been identified, 6While some authors only refer to either HIV stigma or AI DS stigma, I refer to it as HIV/AIDS-related stigma to explicitly include both aspects (HIV and AIDS) of the disease. 29

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according to Goffman, it is maintained by the rules and sanctions of a society, resulting in a kind of "spoiled identity" for the stigmatized person. Based upon his work with people suffering from mental illness, possessing physical deformities, or practicing what were thought to be socially deviant behaviors, Goffman asserted that stigma typically falls in to three distinct categories: (a) abominations of the body, (b) blemishes of individual character, and (c) tr ibal stigma. Abominations of the body refer to physical defects that an individua l might possess, such as a person without arms, legs, or hands. Blemishes of individual character include those people who were s een as having traits, such as weak will, domineering or unnatural passions, tr eacherous and rigid beliefs, and dishonesty inferred from a known record of a mental di sorder, imprisonment, addiction, alcoholism, homosexuality, unemployment, suicide attempts, a nd radical political beha vior. Finally, tribal stigma of race, nation, and religion is believed to be transmitted through lineages and equally contaminates all members of a family (Goffman, 1963). According to Goffman, diseases associated with the highest degree of stigma share four common attributes: (a) the person wi th the disease is seen as responsible for having it, (b) the disease is progressive and incu rable, (c) the disease is not well understood among the general public, and (d) the symptoms of the diseas e cannot be concealed easily. Applying this conceptualization of stigma to HIV/AIDS, Herek (1999) argued that HIV infection fits the profile of a condition that carri es a high level of stigmatization such as that articulated by Goffman. Herek explained that HIV-positive individua ls are often blamed for their condition because there is a societal belief that contraction of the virus c ould have been avoided if better moral decisions had been made on the part of the infected person. He also noted that, even 30

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though HIV is currently treatable today through such medical a dvancements as highly active antiretroviral therapy (HAART), it is still a progr essive and incurable disease. Furthermore, Herek suggested that HIV transmission continues to be poorly understood by some people in the general public, causing them to feel threatened by the mere presence of the disease. Lastly, he stated that, although asymptomatic HIV infection can often be ma sked, symptoms of HIV-related illnesses cannot. Although Goffmans analysis is still regarded as founda tional on the management of stigma, it should be viewed in light of some limitations. First and foremost, Goffmans assessment of stigma is narrowly focused on sta tic individual factors that do not take into account a constantly evolving social process. Second, his concentration on spoiled identity is formulated on the experience of 1960s Western soci ety. In other words, hi s conceptualization of stigma must be viewed within a historical and cultural context. Equally, Herek has been critiqued by some contemporary scholars (e.g., Fine & Asch, 1988; Link & Phelan, 2001; Sayce, 1998) who have noted that his examination of HIV/AI DS-related stigma and discrimination tends to also lean towards a highly individualistic a nd Westernized rendering of the subject. Such critiques rely upon the work of the French so cial philosopher, Michel Foucault whose postmodernist approach to the study of social life, emphasized the ambiguous, complex and constantly shifting nature of social relati onships and meanings, whereas Goffmans work emerged from a US context and emphasized the stability of socially constructed meanings obtained through interactions of stigmatized and non-stigmatized persons. Foucault was particularly interested in what he coined as the "regimes of power" embedded in different knowledge systems, and the forms of control exer cised by such systems over individual, as well as social bodies (Foucault, 1977, p.33). Tw o influential books by Foucault entitled, Discipline 31

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and Punish and The History of Sexuality, Volume I: An introduction placed emphasis on what he defined as a new regime of knowledge and power that characterized modern European societies during the late-nineteenth and early twentieth centuries (Fouc ault 1977, 1978). Within this new regime conceptualized by Foucault, physical viol ence or coercion increasi ngly gave way to what he explained as "subjectificatio n" or social control exercise d not through physical force, but through the production of conforming subjects and docile bodies. In his critical analysis of knowledge and power, he highlighted how the social production of difference (what Goffman might have defined as deviance or deviant be havior) is linked to established systems of knowledge and power. In essence, he argued that the so-called "unnatural" is necessary for the definition of the "natural," the "abnormal" exists only to define what is "normal" (Foucault 1977, 1978). While Goffmans examination of stigma does not directly mention dynamics of social power, and Foucaults analysis of power seems a ltogether unconcerned with a detailed analysis of stigma, when read together their bodies of work offer a compelling case for the role of culturally constituted stigmatization (i.e., the pr oduction of negatively valued difference) in service to specific power relations and central to both establishing and maintaining social order. Within such a combined framework, the cons truction of HIV/AIDS-related stigma involves marking the difference between PLWHA and those who remain seronegative. This distinction between categories of people becomes embedded in social arrangements affirmed by the very same power dynamics that brought the system in to existence. Thus, HIV/AIDS-related stigma may function quite literally at the point of inte rsection between culture, power, and difference. Although Goffman and Foucaults conceptualizati on of stigma are both useful frameworks for understanding how and why HIV/AIDS-related stigma exists, it is also important to 32

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investigate the impact of HIV/AIDS-related stig ma on psychological distress and health-related quality of life as this examination may help to uncover some of the psychological and physical challenges faced by PLWHA. Identifying protective factors, such as social support and perceived patient-centered cultural sensitivity in health car e experienced, that could assist in reducing the negative experience of HIV/AIDS-related stigma is critical. In the next section, concepts of psychological distress, h ealth-related quality of life, soci al support, and perceived patientcentered cultural sensitivity in health care expe rienced are introduced. In addition, literature to support the inclusion of selected demographi c variables (e.g., age, gender, race, sexual orientation, and social class) in the present study is provided. Psychological Distress Psychological distress typically refers to the expe rience of negative affective states, such as depression, anxiety, and loss of emotional and behavioral cont rol (Manning & Wells, 1992). In the past, research that was or iginally conducted on psycholog ical distress among PLWHA tended to focus on the psychological impact of learning that an individual was HIV-positive and with respect to disease progression (Chesney & Folk man, 1994). Previous studie s have explored the relationship between HIV/AIDS-related stigma and psychological distress. For instance, Silver, Bauman, Camacho, and Hudis (2003) found in a US sample of 220 low-income, mostly ethnically diverse women with late-stage HIV/AIDS that perceived stigma was significantly and positively related to psychological distress. Si milarly, Miles, Burchinal, Holditch-Davis, Wasilewski, and Christian (1997) found a signifi cant positive association between enacted stigma and psychological distress in a sample of 54 HIV-positive mothers who were receiving treatment at infectious disease clinics in the southeastern US. In both of these studies, HIV/AIDS-related stigma was measured along one dimension of stigma (e.g., perceived or enacted). However, to the author s knowledge, there have not been any empirical studies to date 33

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that have examined the multiple forms of HIV/AIDS-related stigma (e.g., perceived, internalized, or enacted) and their relationships to psychological distress. Health-Related Qu ality of Life Health-related quality of life is a multidim ensional construct generally defined as a subjective evaluation of ones life across a num ber of dimensions including physical functioning, social functioning, pain, and energy (Nordenfelt, 1994). Research efforts investigating healthrelated quality of life for PLWHA have traditionally cente red on the evaluation of the effectiveness of medical and pharmacological tr eatments for HIV infection (Lubek & Fries, 1993). Yet, there is a growing recognition (i.e., Aranda-Naranjo, 2004; Clayson, Wild, Quarterman, Duprat-Lomon, Kubin, & Coons, 2006) in the extant literature that for PLWHA health-related quality of life is an im portant outcome in and of itself. Preliminary findings from international re search conducted among community samples of PLWHA residing in Ecuador sugge st a negative association be tween HIV/AIDS-related stigma and health-related quality of lif e. For instance, Ayarza and Reyes (2002) identified the traumatic impact that stigmatization had on the health-related quality of life among their sample of 42 HIV-positive Ecuadorians. Castle, Cornu, Dua, He rrera, Nadkarni, Ouedraogo et al. (2002) and Ortega, Gonzales, and Liwanag (2002) reported finding that access to services that offer peer social support often ends self-i solation and reduces stigma, and thus enhances health-related quality of life. Thus, understanding the impact of HIV/AIDS-related stigma on health-related quality of life among a US population is an area rife for fruitful discovery that was explored in the present study. Social Support Social support can be defined as the degree to which a persons basic social needs are gratified through interaction with others, such as family members, friends, and co-workers 34

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(Thoits, 1995). Basic social needs often include affection, esteem or approval, belonging, identity, and security. These needs may be met by either the provision of wh at has been referred to as "socio-emotional aid" (e.g., affection, sy mpathy and understanding, acceptance, and esteem from significant others) or the offering of "instr umental aid" (e.g., advice, information, help with family or work responsibilities, or financial supp ort). Instrumental and so cio-emotional aid share a reciprocal relationship in that practical help from others assures the individual that he or she is cared about (House & Kahn, 1985). So cial support is often consid ered to be an important resource for people coping with the challenges of chronic illness and disability and is thought to be a potential avenue for interv ention with PLWHA in order to address stigmatization. Some researchers have noted that social s upport may improve one's health by enhancing access to resources and improving health-related behaviors. For instance, Turner and Turner (1999) suggested that integrati on into supportive networks helps to improve mental and physical health by reducing levels of stress or by bufferi ng individuals from stressors that typically diminish health and well-being. Other researchers have found that connection to social supports reduces health risk behavi ors and increases emotional bonding through the provision of information and advice, and positive peer infl uence (Ennett, Bailey, & Federman, 1999; Litwak & Messeri, 1989; Resnick, Bearman, Blum, Ba uman, Harris, Jones et al., 1997). Recently, Swendemen, Rotheram-Borus, Comulada, Weiss, and Ramos (2006) suggested that social support may assist in decreasing the experience of HI V/AIDS-related stigma, which in turn, might reduce the experien ce of psychological distress among PLWHA. In previous healthrelated research, social support has been identified as a modera tor of the relationship between stress and health outcomes and stress a nd depressed mood (Petersen, Folkman, & Bakeman, 1996; Winefield, Winefield, & Tiggemann, 1992). T hus, social support in the present study was 35

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explored as a potential moderator between HIV/ AIDS-related stigma and psychological distress, as well as between HIV/AIDS-related stigma and health-related quality of life. Perceived Patient-Centered Cultural Sens itivity in Health Care Experienced Perceived patient-centered cultural sensitiv ity in health care experienced has been described as cultural competence plus and has th e following specific characteristics: (a) it emphasizes displaying patient-desired modifiable provider and staff beha viors and attitudes, implementing healthcare center policies, and disp laying physical healthca re center environment characteristics that culturally diverse patients id entify as indicators of respect for their culture and that enable these patients to feel comforta ble with, trusting of and respected by their health care providers and office staff; (b) it conceptualizes the pa tient-provider relationship as a partnership that emerges from patient-centeredness ; and (c) it is patient empowerment oriented (Tucker, Mirsu-Paun, van den Berg, Ferd inand, Jones, Curry et al., 2007). Among HIV-positive individuals, prior research has documented that the quality of and satisfaction with the patient-provider relationship is positively associated with medication adherence and positive health outcomes. A quali tative study conducted by Roberts (2002) with 28 HIV-positive patients recruited from an urban public health clinic in San Francisco, California suggested that poor patient-physic ian relationships impeded antiretroviral medication adherence. In a similar vein, a separate study found that pati ents with HIV/AIDS who were not being treated with antiretroviral medications had more negative perceptions of their health care experience and health care providers than those who were be ing treated with antiretroviral medications (Kalichman, Graham, Luke, & Austin, 2002). Forty-six women living with HIV in the sout heastern US particip ating in a focus group study identified several aspects of their encounters with health care providers (e.g., health care workers' lack of knowledge, providers' fears, and provider insensitivity) that were considered by 36

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participants to be barriers to seeking HIV/AI DS-related services (Sow ell, Seals, Moneyham, Demi, Cohen, & Brakes, 1997). Moreover, a study of HIV-positive persons new to primary HIV care in the northeastern US found that patients' perceptions of their physicians were positively associated with satisfaction of their health care providers (Sul livan, Stein, Savetesky, & Samet, 2000). In an effort to understand what additional fact ors might assist in re ducing or lessening the burden of HIV/AIDS-related stigma encounter ed by PLWHA, the present study explored whether patient-centered cultural sensitivity in he alth care experienced may serve as a moderator between HIV/AIDS-related stigma and health-relat ed quality of life, given that some prior research has documented that the quality of and satisfaction with the patient-provider relationship positively influences medication ad herence and positive health outcomes (Apollo, Golub, Wainberg, & Indyk, 2006; Bird, Bogart, & Delahanty, 2004). Perceived Discrimination in Health Care and Demographic Characteristics Several health-related studies ha ve found that a significant per centage of individuals report experiencing discrimination based on their race, so cial class, gender, age, and sexual orientation, when obtaining health care. For example, Bird and Bogart (2001) reported that 63% of participants perceived discrimination in their in teractions with health care providers based on their race and 58.9% of participan ts reported perceived discriminati on based on their social class, among a sample of 76 African Amer ican adults living in the northwestern US. Dailey, Kasl, and Jones (2008) found a positive association betwee n gender discrimination and non-adherence to mammography guidelines in a sample 1,451 African American and White women who obtained an index screening mammography at one of five urban hospitals in Connecticut. In a study among 810 patients living with diabetes in Calif ornia or Wisconsin, Piette, Bibbins-Domingo, and Schillinger (2006) found that 7% of their sample reported experien cing age discrimination, 37

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which was linked to negative health outcomes Stein and Bonuk (2001) found that 17% of the 575 gay and lesbian persons residing in the New York metropolitan area who participated in their study reported avoiding or de laying seeking care as a result of their health care providers' hostile responses to thei r sexual orientation. In the present study, there was an exploration of whether significant differences in HIV/AIDS-related stigma exist in association with age, gender, race, sexual orient ation, and social class. Statement of the Problem Despite significant pleas from researchers, soci al activists, and public health officials for a body of work that addresses the impact of HIV/AIDS-related stigma and discrimination on PLWHA (Annan, 2003; Mann, 1987; Pi ot, 2000), few recent empirical studies on stigma and discrimination have been conducted in the US. Current research that documents the lived experience of PLWHA is urgently needed as stig ma and discrimination have been noted as major barriers to satisfactory health care and quality of life among PLWHA (Deacon, 2006). Investigating HIV/AIDS-related stigma's impact on psychological distress and health-related quality of life is imperative as this examina tion may provide some insights into the physical health and psychological challenges faced by PLWH A. In order to iden tify potential protective factors against HIV/AIDS-related stigma, it was al so important to explor e whether social support would moderate the relationshi p between HIV/AIDS-related stig ma and psychological distress, and whether social support and perceived patient -centered cultural sensitivity in health care experienced would moderate the relationship between HIV/AIDS-related stigma and healthrelated quality of life. Purpose of the Present Study The purpose of the present study was to investigate the associations between HIV/AIDSrelated stigma (including measur es of perceived stigma, enacted stigma, and internalized stigma) 38

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and both psychological distress and health-related quality of life among PLWHA. In addition, whether these associations are moderated by social suppor t and perceived patient-centered cultural sensitivity in health care experienced was examined. To accomplish these objectives, there was first an exploration of the relationship between the experiences of social discrimination and HIV/AIDS-related stigma. Second, there was an examination of the relationship be tween perceived patient-centered cultural sensitivity in health care experienced and HIV/AIDS-related stigma. Third, there was an exploration of whether social support would moderate the relationship between HIV/AIDS-related stigma and psychological distress. Fourth, there was an investigation of whether social support and perceived patient-centered cultural sensitivity in health care experienced would moderate the relationship between HIV/AIDS-related stigma and h ealth-related quality of life. Fifth, there was an exploration of whether there are significan t differences in HIV/AIDS-related stigma in association with selected demogr aphic variables (i.e., age, gende r, race, sexual orientation, and social class). In the next sect ion, the two hypotheses that were te sted and the three exploratory research questions that were investigat ed in the present study are identified. Hypotheses and Exploratory Research Questions Hypotheses On the basis of prior literature, the following two hypotheses were investig ated in the present study: Hypothesis 1: Experiences of social discrimination will be related positively to HIV/AIDSrelated stigma. That is, as experiences of so cial discrimination incr ease, HIV/AIDS-related stigma will also increase. Hypothesis 2: Perceived patient-centered cultural sens itivity in health care experienced will be related negatively to HIV/AIDS-related stigma. That is, as perceived patientcentered cultural sensitivity in health care ex perienced increases, HIV/AIDS-related stigma will decrease. 39

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40 Exploratory Research Questions The following three exploratory research questions were also examined in the present study: Exploratory Research Question 1 : Does social support moderate the relationship between HIV/AIDS-related stigma a nd psychological distress? Exploratory Research Question 2 : Does social support and perceived patient-centered cultural sensitivity in health care experienced moderate the relationship between HIV/AIDS-related stigma and heal th-related quality of life? Exploratory Research Question 3 : Are there significant differe nces in HIV/AIDS-related stigma in association with demographic ch aracteristics (e.g., age, gender, race, sexual orientation, and social class)?

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CHAPTER 2 REVIEW OF THE LITERATURE This chapter presents an overview of the existing literature on hu man immunodeficiency virus/acquired immune deficiency syndrome (HIV/A IDS)-related stigma and its potential impact on psychological distress and health-related qua lity of life among persons living with HIV/AIDS (PLWHA) in the United States (US). First, a di scussion of the dimensions of HIV/AIDS-related stigma (e.g., enacted, perceived, and internalized ) that have been typically investigated separately in previous research studies is highlighted. Second, the possibility of layered stigma as an additional dimension of HIV/AIDS-related stigma is discussed. Third, a rationale for including multiple measures of HIV/AIDS-related stigma in the present study is stated. Fourth, empirical literature on the impact of HIV/AI DS-related stigma on psychological distress and health-related quality of life is presented. Fifth, the influence of the patient-provider relationship for PLWHA is examined within the context of un derstanding how this rela tionship might help to reduce or lessen the burden of HIV/AIDS-related stigma. Sixth, a literature-based, testable, and formative model for patient-centered culturally se nsitive health care that includes health care provider behaviors and attitudes, office staff beha viors and attitudes, and center policies and physical environment characteristics of the hea lth care clinic is identified to explain how perceived patient-centered cultural sensitivity in health care experienced may serve as a moderator between HIV/AIDS-related stigma and h ealth-related quality of life. Seventh, the role of social support in possibly serving as a moderator between HIV/AIDS-related stigma and psychological distress, as well as between HIV/AIDS-related stigma and health-related quality of life is discussed. 41

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Dimensions of HIV/AIDS-Related Stigma Much of the previous research on HIV/AI DS-related stigma uses a broad or vague understanding of the concept of stigma (Link & Phelan, 2001). In addition, some scholars (e.g., Deacon, 2006) have critiqued work in this area, claiming that there is not a common theoretical perspective on stigma that unites both individual and social fact ors of this complex phenomenon. Recently, Nyblade (2006) identified and described three dimensions or forms of HIV/AIDSrelated stigma, which are as follows: (a) enacte d stigma, (b) perceived or felt stigma, and (c) internalized stigma. These dimensions capture bot h individual and social features of stigma. Hence, it can be argued that the inclusion of these three dimensions may provide a more comprehensive assessment of HIV/AIDS-related s tigma as opposed to focusing solely on one of these dimensions as commonly occurs. In the HIV/AIDS-related stigma literature, enacted stigma typically refers to the actual experiences of stigma and discri mination, whereas felt or perceived stigma tends to be a persons fear or anticipation of discri mination and rejection, and intern al sense of shame (Jacoby, 1994). Perceived stigma may lead people to shape their behaviors to avoid enacted stigma, but in so doing they may also limit opportunities for support a nd treatment or otherwis e disrupt their lives (Scambler, 1998). On the other hand, internalized stigma appears to involve the devaluation, shame, secrecy, and withdrawal triggered by appl ying negative stereotypes to oneself (Corrigan, 1998). A fourth form of HIV/AIDS-related stigma that has been discussed in the extant literature but not empirically tested is the concept of layered stigma1. For example, Crawford (1996) and Novick (1997) suggested that various stigmata may layer onto HIV stigma and result in 1 Some authors (e.g., Grossman, 1991; Nyblade, 2006; Herek et al., 2005) have referred to layered stigma as compound stigma, double stigma, and symbolic stigma. 42

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differential expression toward unpopular groups (e.g., gay men, sex workers, and injection drug users) often associated with increased risk or rates of HIV infec tion. Similarly, Herek and Capitanio (1999) argued that layered stigma may occur when a person who is infected with HIV additionally has to deal with the negative association of being part of a social group that is also highly stigmatized. In this conceptualization of layered stigma, an HIV-infected gay man who is also African American, low-income, and an injection drug user, for example, has to de al with not only the stigma related to his HIV serostatus but also with the stigma associated with his race, socioeconomic status, HIV status, substance use, and sexual orientation. Thus, obtaining empirical data on layered stigma would contribu te substantially to ou r understanding of how PLWHA may negotiate their multiple identities and the impact of their experience of layered stigma on their psychological distress and health-related quality of life. In the present study, there were two ways in which the occurrence of layered stigma was assessed. The first way was to include a reliabl e and valid measure [e.g., the Experiences of Social Discrimination (ESD)] that evaluates th ree dimensions of social discrimination: (a) homophobia, (b) racism, and (c) financial hardsh ip. The second way to capture the possible existence of layered stigma was to test for differences in HIV/AIDS-related stigma in relation to participant demographic characteristics. Hence, there was an examination of whether there were any significant differences in HI V/AIDS-related stigma in associ ation with age, gender, race, sexual orientation, and social class, given that these particular va riables have been examined in previous research on discriminati on in the health care setting. 43

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In the next section, a discussion of the measur es of HIV/AIDS-stigma that have been used in past research studies and the rationale for including multiple measures of HIV/AIDS-related stigma in the present stu dy are identified. Assessing HIV/AIDS-Related Stigma Over the last decade, several measures of HIV/AIDS-related stigma that assess one dimension of stigma (e.g., perceived, enacted, or internalized) or other asp ects related to stigma (e.g., disclosure concerns, negativ e self-image, and concern with public attitudes) have been identified in the extant literature (Berger, Ferrans, & Lashley, 2001; Bunn, Solomon, Miller, & Forehand, 2007; Lee, Kochman, & Sikkema, 2002; Sowell et al., 1997; Sowell, Lowenstein, Moneyham, Demi, Mizuno, & Seals, 1997). While ma ny of these instruments claim to evaluate the negative impact of HIV/AIDS-related stigma on the lives of PLWHA, it can be argued that these instruments fail to adequately assess the multip le dimensions or forms of stigma identified by Nyblade (2006) that contribute to a fuller understanding of the e xperience of HIV/AIDSrelated stigma among PLWHA because they only focus on one dimension of stigma. In the present study, all three dimensions of HIV/AIDS-related stigma (e.g., perceived, enacted, and internalized) were assessed usi ng the AIDS Stigma Measure (ASM), which is further discussed in the measures section. Given that the ASM is a fairly new measure, other more traditionally used measures of each dimens ion of stigma [i.e., HIV Stigma Scale-Revised (HSS-R) and HIV Stigma Scale-Perceived (HSSP)] were also included in the present study. Gathering data on a new measure that evaluate s the three dimensions of stigma in one assessment tool could provide a more powerful and comprehensive assessment of HIV/AIDSrelated stigma than just focusing solely on one form of stigma, as has been done in previous research. In addition, obtaining validity data (i.e., construct, co ncurrent) for this new stigma measure could significantly contribute to its poten tial usage by other inves tigators interested in 44

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conducting HIV/AIDS-related stigma work. In the ne xt section, a review of the extant literature on the impact of HIV/AIDS-related stigma on psychological distre ss is discussed. Impact of HIV/AIDS-Related St igma on Psychological Distress Psychological distress typically refers to the expe rience of negative affective states, such as depression, anxiety, and loss of emotional and behavioral cont rol (Manning & Wells, 1992). In the US, several research studies involving PLWHA have documente d the association between at least one of the three different dimensions of HIV/AIDS-related stigma (e.g., enacted, perceived, and internalized) and depression, as well as anxiety, alienation, and poor psychological functioning (Clark, Linder, Armistead, & Austin, 2003; Crandall & Coleman, 1992; Lee, Kochman, & Sikkema, 2002; Lichtenstein, Laska, & Clair, 2002; Vanable, Carey, Blair, & Littlewood, 2006). In addition, previous US empirical studies among PLWHA have found a significant positive relationship between one of the dimensions of HIV/AIDS-related stigma and psychological distress (Miles, Burchinal, Holditch-Davis, Wasilewski, & Christian, 1997; Silver, Bauman, Camacho, & Hudis, 2003). In one of the earliest studies on AIDS-relate d stigmatization, Crandall and Coleman (1992) found in sample of 48 US men and women who we re either diagnosed with AIDS or AIDSrelated complex,2 or were diagnosed as being HIV-pos itive that those participants who felt stigmatized by others also experienced higher levels of depression, anxiety, and alienation. Moreover, these authors showed that feelings of depression, anxiety, and alienation were independent of HIV diagnostic se verity but were associated with disruptions in social relationships. Lichtenstein and colleagues (2002) study on chronic sorrow with a diverse sample of 21 HIV-positive men and women living in Birmingham, Alabama showed that half of their 2 AIDS-related complex was a term that was originally used among health professionals to refer to people with HIV infection who had only mild symptoms of illness such as swollen lymph glands. The term is rarely used today. 45

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participants were clinically depressed. In part icular, these authors noted that stigma and the social isolation that results fr om having a "discredited identity" were especially challenging for the African American infected mothers in the study, who reporte d greater levels of depression. Similarly, Clark et al. (2003) f ound that higher perceptions of AIDS-related stigma among their sample of 98 HIV-infected African American wo men with children were associated with poorer psychological functioning. These authors operationalized psychologi cal functioning as the extent to which the experience of AIDS-related stigma wa s perceived to cause ps ychological distress. Prior research that has specifically investigat ed the concept of internalized HIV stigma (IHS) among PLWHA found that higher levels of IHS may be related to several different factors. Lee et al. (2002) in a sample of 268 HIV-pos itive men and women living in Milwaukee and Madison, Wisconsin or New York City showed that being recently diagnosed with HIV, having family members who were less accepting of their illn ess, being less likely to have ever attended an HIV support group, knowing fewer PLWHA, and worrying about spreading their infection to others all contributed to highe r levels of IHS. After cont rolling for the possible confounding effects of demographic characteristic s, health status, level of grief, styles of coping with illness, and social support, these authors also found th at IHS accounted for a significant and unique proportion of the variance in levels of depression, anxiety, and hopelessness. Among a sample of 221 HIV-positive men a nd women who were outpatients at a university-based inf ectious disease clinic in central New York State, Vanable et al. (2006) found that study participants who repor ted more frequent stigma-relate d experiences that focused on mistreatment (e.g., "How often have you been treated badly by people because of your HIV/AIDS illness?") and social avoidance (e.g., "H ow often do others avoid you after they learn of your HIV/AIDS status?") since first being diagnosed with HIV we re more likely to experience 46

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depressed mood than those participants who repor ted less frequent stigma-related experiences. Furthermore, these authors noted that participan ts who reported psychiatric treatment within the previous year also endorsed more fr equent stigma-related experiences. As noted earlier, some previous research has explored the relationship between one of the dimensions of HIV/AIDS-related stigma (e.g., perceived, enacted, a nd internalized) and psychological distress. For example, Silver a nd colleagues (2003) found in a US sample of 220 low-income, mostly ethnically di verse women with late-stage HI V/AIDS that perceived stigma was significantly and positively related to psycho logical distress. Similarly, Miles et al. (1997) found a significant positive associa tion between enacted stigma a nd psychological distress in a sample of 54 HIV-positive mothers who were recei ving treatment at infectious disease clinics in the southeastern US. While results from each of these studies demonstrate the positive relationship between HIV/AIDS-related stigma and psycho logical distress, it is important to consider these studies in light of two limitations. First, all of the authors of these studies defined stigma as only one of the three dimensions (e.g., perceived, enacted, and in ternalized) of HIV/AIDS-related stigma as previously discussed. Second, standardized HIV/AIDS-related stigma measures (i.e., HIV Stigma Scale ) were not used in these studies; rather, separate items (i.e., I feel stigmatized as a result of my health status or Do you think that HIV/ AIDS is a disease that your immediate family would not want others to know about?) of stigma were created by the in vestigators to measure stigma. Thus, there are no known empirical studies to date to the authors knowledge that have conducted a standardized global assessment3 of HIV/AIDS-related stigma and its potential 3 When I refer to global assessment he re I am specifically talking about examining multiple forms or dimensions of HIV/AIDS-related stigma (e.g., pe rceived, enacted, and internalized) in a general population of PLWHA. 47

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negative psychological impact on PLWHA. In the ne xt section, a discussion of the impact of HIV/AIDS-related stigma on health-relat ed quality of life is presented. Impact of HIV/AIDS-Related Stigma on Health-Related Quality of Life Health-related quality of life is a multidim ensional construct generally defined as a subjective evaluation of ones life across a num ber of dimensions including physical functioning, social functioning, pain, and energy (Nordenfelt, 1994). Research on adaptation to terminal or chronic illnesses high light the importance of a number of personal and environmental characteristics that influence health-related quali ty of life. These characteristics include selfesteem, quality of social and family relationshi ps, role functioning, financial resources, and communication patterns (Servellen & Aguirre, 1995). An increasing number of empirical studies ha ve focused on assessing health-related quality of life among PLWHA (Howland, Storm, Crawford, Ma, Gortma ker, & Oleske, 2007; Jia, Uphold, Wu, Chen, & Duncan, 2005; Uphold, Holm es, Reid, Findley, & Parada, 2007). Early investigations of health-r elated quality of life among PLWHA focused on assessment methodology issues (e.g., Kaplan, Anderson, Wu, Mathews, Kozin, & Orenstein, 1989). However, more recent studies have sought to iden tify predictors of health -related quality of life and to develop interventions by which it can be improved for PLWHA (Hughes, Jelsma, MacLean, Darder, & Tinise, 2004; Roth & Robbi ns, 2004; Sikkema, Hansen, Meade, Kochman, & Lee, 2005). To the authors knowledge, no published empiri cal studies in the US have explored the relationship between HIV/AIDS-related stigma a nd health-related quality of life (Emlet, 2007). The authors of a few unpublished international studies that were presented at the 2002 XIV 48

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International AIDS Conference in Barcelona, Spain4 reported some preliminary findings that suggest a negative association between HIV/AIDS-re lated stigma and health-related quality of life. For example, Ayarza and Reyes (2002) desc ribed the traumatic eff ect that stigmatization had on the health-related quality of life among PLWHA in Ecuador. Castle, Cornu, Dua, Herrera, Nadkarni, Ouedraogo et al. (2002) and Ortega, Gonzales, and Liwanag (2002) reported finding that access to services that offer peer social support ends self-isolati on and reduces stigma, and thus enhances health-related quality of life. Orlando, Guaraldi, Murri, Wu, Nardini, Beghetto et al. (2002) found a significant negative correlation between lipodystrophy (a disturbance in the way one's body produces, uses, or stores fat) and lower health-related quality of life among 175 AIDS patients living in Italy. Although these investigators did not measure HIV/AIDS-rela ted stigma directly, th ey reported that lower role functioning as measured by their health-related quality of life scale was attributable to perceived stigma. These unpublished international studies illustrate th e need for additional research to investigate the relationship between HIV/AIDS-related stigma and health-related quality of life among PLWHA in the US. In considering the impact of HIV/AIDS-re lated stigma on psychological distress and health-related quality of life, it is also important to take into account what variables might influence how HIV/AIDS-related stigma is expe rienced by PLWHA. For example, it is quite possible that protective factors, such as the patient-health care provider relationship or social support, could help to decrease or lessen the burden of HIV/AIDS-related stigma. In the next section, a discussion of the exis ting literature on the patient-pr ovider relationship experienced by PLWHA is provided. 4 Findings from these studies were collected by the current author during his trip to the 2002 XIV International AIDS Conference in Barcelona, Spain to present his rese arch. However, study abstracts are also available online through the US National Institutes of Health's website. 49

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Patient-Health Care Provider Relationship fo r Persons Living with HIV/AIDS (PLWHA) In recent years, the patient-health care provider relationship has gained considerable attention in the HIV/AIDS literature on me dication adherence and health outcomes among PLWHA (Apollo, Golub, Wainberg, & Indyk, 20 06; Bird, Bogart, & Delahanty, 2004). Beach, Keruly, and Moore (2006) found in a sample of 1,723 HIV-infected persons that the quality of the patient-provider relationship wa s directly related to the health outcomes of these patients. In their study, these authors showed th at participants who reported that their physicians displayed patient-centered communication (defined by th ese authors as understanding each patient as a unique human being) were more likely to receiv e highly active antiretr oviral therapy (HAART), be adherent to HAART, and have undetectable serum HIV R NA. These patients also noted higher quality of life, missed fewer appointme nts, held more positive beliefs about HAART therapy, had less social stre ss, and were less likely to use illicit substances. Earlier HIV/AIDS-related research that was conducted on satisfaction with the patientprovider relationship among PLW HA found a number of common factors that appear to influence whether the patient values the relation ship. First, the nature of the relationship (e.g., sharing a personal connection) seems to be more important than the type of health care provider (i.e., physician or nurse) for impacting patients positive ratings of the relationship (Stone, Weissman, & Cleary, 1995). Secon d, knowledge of the health care provider, especially as it relates to information regarding current medicati ons or treatment options for HIV or AIDS, has been noted as an important factor in provider-patient relations hip satisfaction (Sullivan, Stein, Savetsky, & Samet, 2000). Third, practice styles of the health care provider that denote such characteristics as caring, follow-through, and taki ng time with patients is believed to contribute to satisfaction with the rela tionship by patients (Bakken, Holzemer, Brown, Powell-Cope, Turner, Inouye, et al. 2000). 50

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Although prior research has documented that the quality of and satisfaction with the patient-provider relationship positively influences medication adherence and health outcomes, no empirical studies to the author s knowledge have investigated whether the patient-provider relationship may help to minimize the experien ce of HIV/AIDS-related stigma among PLWHA. In addition, it is quite po ssible that other contributing factor s to the health care experience may assist in reducing or lessening the burden of HIV/AIDS-related stigma encountered by PLWHA. In the next section, a literatu re-based, testable, and forma tive model for patient-centered culturally sensitive health care that includes heal th care provider behaviors and attitudes, office staff behaviors and attitudes, a nd center policies and physical environment characteristics in the health care clinic is presented. Patient-Centered Culturally Sensitive Health Care Extending the relationship beyond the patien t and provider (e.g., doctors, nurses) to improve a patients health-promoting behaviors (i.e., recommended healthy eating), health care behaviors (i.e., treatment adherence), and heal th-related outcomes and statuses (i.e., blood pressure), Tucker, Herman, Ferdinand, Bailey, Lop ez, Beato, et al. (2007) proposed a literaturebased, testable, and formative model for patient-c entered culturally sensitive health care (PCCSHC) that also includes office staff members (e .g., front desk staff) be haviors and physical environmental characteristics (e.g., waiting room area) and policies (e.g., stated and publicly displayed statement regarding the order in which patients are seen) of the health care clinic. In their work, these authors specifically argued for the promotion of PC-CSHC environments with the ultimate goal of reducing the health disparities that curren tly exist between minority and majority individuals in the US. According to Tucker et al., their model cons ists of a PC-CSHC intervention program that includes the following three subcomponents: (a) tr aining health care providers and office staff 51

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members to engage in behaviors and display attitudes that enable patients to feel comfortable with, trusting of, and respected by their health care providers and staff members and that enable them to feel that they and thei r cultures are respected (i.e., inqui ring about and respecting cultural beliefs of patients); (b) changing the health care clinic physical environment and clinic policies in ways that culturally divers e patients report as making them feel a sense of comfort and belonging in the clinic and invol ving health care administrators and providers in making these changes (i.e., displaying culturally diverse artw ork and informational materials and posting a statement regarding the order in which patien ts are seen); and (c) training and empowering patients to engage in health-promoting lifestyle s and to motivate and inspire desired behaviors and attitudes from providers and office staff members (i.e., giving negative and positive feedback to their health care provider or front desk st aff member in a constructive manner) and desired changes in the health care environment (i.e., requesting that an indoor childs play area be created in the clinic waiting area). It is explained by Tucker et al. that with the implementati on of the PC-CSHC intervention program participating patients le vels of perceived PC-CSHC and perceived interpersonal control (e.g., psychological empowerment) are impacted, wh ich in turn, influence patients engagement in health-promoting behaviors and health care satisfaction. It is also suggested in the PC-CSHC model that patient health care satisfaction directly effects patient treatment adherence; but is not directly associated with patient health outcomes and statuses. Ra ther, these authors postulated that health outcomes and statuses are influenced separately by patients health-promoting lifestyles and treatment adherence. The PC-CSHC m odel is illustrated in Figure 2-1 at the end of this chapter. 52

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In the present study, exploring the potential association between HIV/AIDS-related stigma and perceived patient-centered cultural sensitivity in health care experienced is critical to understanding the health care needs and challenges often faced by PLWHA. Furthermore, since perceived patient-centered cultural sensitivity in health care experienced may also contribute to the relation between HIV/AIDS-related stigma and health-related quality of life, it would be important to see if perceived pa tient-centered cultural sensitivity in healthcare experienced may also serve as a moderator between HIV/AIDS-related stigma and health-related quality of life. It is also essential to consider what additional pr otective factors (e.g., social support) might assist in lessening or reducing the expe rience of HIV/AIDS-related stig ma among PLWHA. In the next section, the existing literature on the role of social support in possibly serving as a moderator between HIV/AIDS-related stigma and psychological distress is discussed. Social Support, HIV/AIDS-Related St igma, and Psychological Distress Social support from significant others, family members, and friends is widely believed to buffer the impact of a variety of stressful life events including chronic illness (Cohen & Willis, 1985). Decreases in the experience of psychologi cal distress among PLWHA have been linked to social support (Hudson, Lee, Miramontes, & Po rtillo, 2001). In addition, social support is considered to be an important factor in HI V illness progression (Golub, Astemborski, Hoover, Anthony, Vlahov, & Strathdee, 2003), adherence to medication regimens (Ammassari, Trotta, Murri, Castelli, Narciso, Noto et al., 2002), phys ical functioning (Vogl, Rosenfeld, Breitbart, Thaler, Passik, McDonald et al., 1999), and sp irituality (Tuck, McCain, & Elswick, 2001). Recently, it has been suggested that social suppor t may assist in decreasing the experience of HIV/AIDS-related stigma, which in turn, might reduce the experience of psychological distress among PLWHA (Swendeman, Rotheram-Borus, Comulada, Weiss, & Ramos, 2006). In previous health-related research, social suppor t has been identified as a moderator of the 53

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relationship between stress and health outcome s (Winefield, Winefield, & Tiggemann, 1992) and stress and depressed mood (Petersen, Folkman, & Bakeman, 1996). However, to the authors knowledge social support has not ye t been explored as a potential moderator of the relationship between HIV/AIDS-related stigma and psychological distress. While social support may serve as a modera tor of the relationship between HIV/AIDSrelated stigma and psychological distress, it is also quite pos sible that social support may moderate the relationship between HIV/AIDS-related stigma and health-related quality of life. In the next section, the role of social support in possibly se rving as a moderator between HIV/AIDS-related stigma and health-related quality of life is explored. Social Support, HIV/AIDS-Related Stigma, and Health-Related Quality of Life Reduced levels of health-related quality of life among PLWHA may be associated with a number of factors. These include multiple AIDS-related losses and bereavement (Hansen, Tarakeshwar, Ghebremichael, Zhang, Kochman, & Sikkema, 2006), the need to make significant changes in sexual behavior (Uphold, Holmes, Reid, Findley, & Parada, 2007), relationship and social support disruption (B urgoyne & Renwick, 2004), and limite d employment opportunities (Stangl, Wamai, Mermin, Awor, & Bunnell, 20 07). However, it is less clear what the associations are between social support, HIV/AIDS-related stigma and health-rela ted quality of life. To date, few empirical studies have investig ated the relationship be tween social support, HIV/AIDS-related stigma, and health-related quality of life. The only known study that has indirectly looked at the rela tionships among these variables was conducted by Heckman, Somlai, Sikkema, Kelly, and Franzoi in 1997. The purpose of the study was to identify psychosocial predictors of general health -related quality of life among 275 men and women living with HIV who reside in Wisconsin. In this community sample, the specified researchers found that 54

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participants who reported higher levels of health -related quality of life also reported increased physical well-being, greater levels of social support, frequent use of active coping strategies, and fewer experienced incidents of stigma and discrimination. While these results do provide some empiri cal evidence for associations among social support, HIV/AIDS-related stigma, and health-related quality of life, additional research is desperately needed to further examine these associations. Understanding the role of social support in possibly moderating the relationship between HIV/AIDS-related stigma and healthrelated quality of life is essential for several reasons. Firs t, as life expectancy among PLWHA continues to increase, it is important to recogni ze protective factors (i.e., social support) that may guard against HIV/AIDS-related stigma. Second, health-related quality of life may influence such factors as medical decision making, willingne ss to pursue or accept medical treatment, and disease course and progression (Rei dy & Taggart, 1992). Third, if hea lth-related quality of life is related to social support, th en intervention programs focu sed on reducing HIV/AIDS-related stigma that foster such variables as social s upport may in turn improve health-related quality of life among PLWHA. Demographic Characteristics a nd HIV/AIDS-Related Stigma Prior research has investigated the re lationship between various demographic characteristics (e.g., gender, race, sexual orient ation, social class, and age) and HIV/AIDSrelated stigma. Carr an d Gramling (2004) and Lekas, Siegel, and Schrimshaw (2004) found significant positive associations between gender and HIV/AIDS-related stigma in their community samples of HIV-positive persons livi ng throughout the US. In addition, Sandelowski, Lambe, and Barroso (2004) conducted a metasynthe sis (systematic integrations in findings) of qualitative studies on stigma among women with HIV. These au thors reviewed 93 qualitative 55

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studies that included 1,780 US HIV-positive wome n and reported that perceived and enacted stigma were pervasive in these womens' lives, in part due to the fact that they were women. Significant positive associations between r ace and HIV/AIDS-related stigma and sexual orientation and HIV/AIDS-relate d stigma have also been noted by some researchers. Among their sample of 202 HIV-positive persons residing in two large US cities, Sayles, Hays, Sarkisian, Mahajan, Spritzer, and Cunningham (2008) found that partic ipants who reported higher overall internalized stigma scores also self-identified as racial/ethnic minorities and heterosexual. It has also been suggested th at HIV-positive African American and Latina heterosexual women living in poverty experience increased stigma due to associations with gender, race/ethnicity, social class, and sexual orienta tion (Bunting, 1996). Emlet (2007) examined relationships between age, HIV-related stigma, and patterns of disclosure of HIV status. In his study with 88 persons living with HIV, who ranged in age from 20-71 years old, Emlet found that differences in HIV-related stigma scores by age were not statistically significant. However, Emlet noted that results from his study should be interpreted with caution given that all of his participants were drawn from the same AIDS-service organization in the Pacific Northwest of the US. Summary of Literature Review In sum, research that extends the existing literature on HIV/AIDS-related stigma and its potential impact on psychological di stress and health-rela ted quality of life of PLWHA is clearly needed. In the present study, investigating multi ple dimensions of HIV/AIDS-related stigma (e.g., perceived, enacted, and intern alized) may provide us with a fuller understand ing of this complex phenomenon. In addition, empirically inves tigating the existence of a fourth form of stigma (e.g., layered stigma) could offer some insights into the multidimensional nature of HIV/AIDS-related stigma. Identifying protective f actors (e.g., perceived patient-centered cultural 56

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sensitivity in health care experienced and social support) that moderate the relationship between HIV/AIDS-related stigma and psychological distress, as well as between HIV/AIDS-related stigma and health-related quality of life could also have important implications for helping PLWHA cope with the burden of HIV/AIDS-related stigma. In the next section, a model of all the hypothesized relationships is presented. Model of Hypothesized Relationships In the present study, based upon all of the existing empirical literature previously identified in this chapter, the hypothesized relationships betw een the following variables were examined: (a) HIV/AIDS-related stigma, (b) psychol ogical distress, (c) social support, (d) healthrelated quality of life, (e) experi ences of social discrimination, a nd (f) perceived patient-centered cultural sensitivity in health care experienced. The nature of these hypothesized relationships is presented below in Figure 2.1. Patient Health Promoting Lifestyle Patient Satisfaction Patient Behaviors Patient Treatment A dherence Physical Health Care Environment Patient Perceived Interpersonal Control Patient Provider/Staf f Behaviors -C entered Culturally Sensitive Health Care Intervention Program Patient Perceived Cultural Sensitivity Patient Centered Culturally Sensitive Health Care Patient Health Outcome/Status V ariablesFigure 2-1. The patient-centered culturally sensitive health care (PC-CSHC) model 57

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58 HIV/AIDSRelated Sti g ma H2 + Psychological Distress Health-Related Q ualit y of Life ERQ2 ERQ2 ERQ2 ERQ1 H1 ERQ1 ERQ1 ERQ2 Patient Centered Cultural Sensitivity in Health Care Experienced ERQ2 *Social Support Experiences of Social Discrimination Figure 2-2. Hypothesized relationshi ps among variables of interest. *Note: In the model, social support is indicated as a moderator of the relationship between HIV/AIDSrelated stigma and psychological distress, as well as between HIV/AIDS-related stigma and health-related quality of life; Perceived patient-centered cultural sens itivity in health care experienced is indicated as a moderator of the relationship between HIV/AIDS-related stigma and health-related quality of life. H = Hypothesis; ERQ = Exploratory Research Question.

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CHAPTER 3 METHOD This chapter describes the methodology that was used in the present study. First, information on a power analysis that was calcula ted prior to study implementation in order to determine an appropriate sample size to achieve adequate power is discu ssed. Second, participant inclusion criteria are identifie d. Third, demographic and medical characteristics of the final participant sample are presented. Fourth, participant recruitment efforts and the data collection process are described. Fifth, the survey instruments that were used to measure the variables of interest are provided (i.e., the asse ssment battery for this study). Participants Based upon a power analysis calculation1 (with power = 80%, alpha = .025, and = .64), it was determined that at least 158 participants was needed in the present study to achieve adequate power. In order to obtain 158 pa rticipants, over 200 self-identif ied persons living with human immunodeficiency virus or acqui red immune deficiency syndrome (PLWHA) were recruited. Inclusion criteria were th at study participants must: (a) be at le ast 18 years of age or older, (b) be diagnosed with HIV or AIDS, (c) have the ability to read and understand English, and (d) live in the United States (US). Data were collected from a total of 212 partic ipants. Given that the focus of the present study was on PLWHA in the US, two individuals who indicated living outs ide of the US and 15 persons with large amounts of missing data were excluded from all of the data analyses. Two participants whose validity data suggested the possibility of random responding (determined as 1 The power analysis was calculated by using nQuery Advisor version 5.0 (Elashoff, 2002). 59

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incorrectly answering three or more validity items2) were also not included. As such, the final participant sample consisted of 193 PLWHA (123 men, 70 women). The demographic characteristics of the final pa rticipant sample are presented in Table 3-1. Participants ranged in age from 18 to 74 years ( M = 39.80, SD = 12.26, median = 40). Approximately 41% of the sample identified as Caucasian American/White, 40% identified as African American/Black, 8% identified as Hispanic/Latina/o, 6% identified as Asian American/Pacific Islander, 1% identified as American Indian/Native American, and 4% identified as multiracial or other. In terms of se xual orientation, 46% of the sample identified as exclusively heterosexual, 34% identified as excl usively gay/lesbian, 8% identified as bisexual, 8% identified as mostly gay/lesb ian, and 4% identified as mostly heterosexual. About 59% of the participants reported being single, 19% reporte d being in a committed relationship, 13% reported being married, 5% reported being divorced, 3% reported being widowed, and 1% reported being separated. With respect to soci al class, 25% of the sample identified as lower class, 34% identified as working class, 32% identified as middle class, 6% identified as upper-middle class, and 3% identified as upper cla ss. Approximately 92% of the sa mple indicated that they had disclosed their HIV status to someone else. With regard to their medical history, descriptiv e statistics for the final participant sample are presented in Table 3-2. The mean years sinc e being diagnosed with HIV infection for the entire sample was 8.34 ( SD = 5.36, median = 8). Approximately 47% of the participants indicated that they believed they contract ed HIV through male-to-male sexual contact, 34% indicated high risk heterosexual co ntact, 7% indicated injection drug use, 6% indicated that they did not know how they contracted HIV, 4% i ndicated high risk heterosexual contact and 2 A total of five validity items were randomly embedded in the measures of the study survey. Further explanation of these items is provided in the subsection of data co llection in the procedure section of this chapter. 60

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injection drug use combined, and 2% i ndicated other ways of transmission.3 Approximately 78% of participants reported cu rrently being asymptomatic, 11% reported currently being symptomatic, and 11% reported currently havi ng AIDS. Regarding treatment, 71% of participants indicated th at they had used Highly Active Anti retroviral Therapy (HAART) in the past, 58% indicated that they are currently us ing HAART, and 51% indica ted that they were currently taking other HIV/AIDS-re lated medications (i.e., Atripla, Kaletra, Norvir, Truvada, etc.). Procedure Participant Recruitment Participants were recruited through HIV/AIDS Internet list servs and groups, and through snowball sampling techniques. Spec ifically, advertisements solicit ing participants for a study on the life experiences of PLWHA were sent to a variety of online lis tservs that focus on HIV/AIDS-related issues and that have a co mbined focus on HIV/AIDS and racial/ethnic minorities. This study was also advertised th rough various on-line groups including AOL, Google, Craigslist, Livejournal, Facebook, MySp ace, and Yahoo. In addition, recruitment flyers (please refer to Appendix M for a copy) adver tising this research was posted in various community-based organizations (CBO) and clinic s that primarily serve low-income populations, racial/ethnic minorities, a nd PLWHA. Snowball sampling t echniques included encouraging members of the online listservs and groups, repr esentatives of the CBO and clinics, and study participants to forward or give the survey web address to frie nds and relatives eligible to participate in this study. 3 Additional modes of transmission identified by participants included blood transfusion, childbirth, low risk heterosexual contact, and being raped. 61

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Data Collection A security protected online survey housed by SurveyMonkey.com was used to collect data from potential participants. Some research has suggested that th is method of obtaining data has several advantages. First, data collected via the Internet may re sult in better representation of individuals who are less open about their HIV serostatus (Elford, Bo lding, Davis, Sherr, & Hart, 2006) as it provides participants with anonymity so that they do not have to disclose their serostatus to researchers in person (Ross, Tikkanen, & Mansson, 2000). Second, it will likely result in a more representative sample of diverse populations with regard to demographic characteristics (Bowen, Williams, & Horvat h, 2004; Hirshfield, Remien, Humberston, Walavalkar, & Chiasson, 2004). Third, online re cruitment may increase the likelihood of recruiting large numbers of PLWHA (Birnbaum 2004; Rhodes, Bowie, & Hergenrather, 2003). The study advertisements directed participants to a security protected online survey. Data was collected over a three month period. The inform ed consent (please refer to Appendix A for a copy), which includes information pertaining to the purpose of the st udy, confidentiality of responses, and contact information of the resear chers, was shown to participants once they connected to the online survey website. The particip ants were then instructed to click a link that served as an indication that th ey were voluntarily agreeing to participate in this study. Next, participants were taken directly to the online survey. The survey measures, which are described in greater detail in the section on instruments, were counterbalanced to reduce order effects (please refer to Appendices B-K for survey measures). Additionally, a validity item was embe dded in some of the m easures. These validity items directed participants to respond in a particular manner. For instance, an item asked participants to select the option for Strongly Ag ree or Not At All Agre e. There were a total of five validity items randomly placed throughout th e entire survey. The purpose of these items 62

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was to identify random responding, and to ensure that all participants were reading and understanding the questions. At the completion of the online survey, wh ich took approximately 45 minutes or less4, all participants received a thank you note and debriefing message (please refer to Appendix L for a copy). Two websites and a toll-f ree national hotline number were provided for participants interested in contacting counse ling services and/or receiving information about HIV or AIDS. Participants were encouraged to forward or give the survey web address to friends and relatives eligible to participate in this study. No identifying information (e.g., name, birth date, social security numbers, etc.) was collected by the survey instruments. SurveyMonkey.com (the server that was used to collect and house the data throughout the end of data collection) was desi gned with a 128-bit encryption algorithm, which means that the data was encrypt ed on the computer where the participant was accessing the survey, and that the data was also en crypted in transmission from their computer to the main server. In this way, SurveyMonkey.c om does not capture In ternet Protocol (IP) addresses along with the submission of completed su rveys. The collected survey data was stored on highly secure and firewalled servers, which ca n only be accessed by the Principal Investigator (PI) via password-protected and encrypted file tran sfer protocols. At the end of data collection, the survey and corresponding data were removed from SurveyMonkey.com and stored locally on a highly secured and firewalled computer, whic h can only be accessed by the PI via password protected and encrypted f ile transfer protocols. However, participants were provided with a simplified version of these security procedures in that they were told on the informed consent 4 Two volunteer undergraduates and two volunteer HIV-posi tive patients took the online survey to provide initial feedback on their experience of taking the survey (i.e., per ceived clarity of questions, wh ether or not the format was user-friendly, etc.) and to time how long it took these volunteers to complete the entire survey. The average time for survey completion by the volunteers was 37 minutes. 63

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that no record of their web address would be main tained and that all of their responses would be completely anonymous (please refer to Appendix A). All study procedures were reviewed and approved by the Institutional Review Bo ard of the University of Florida. Instruments Participants anonymously completed an A ssessment Battery (AB) through a security protected online survey. Th e AB consisted of the instruments used to measure the variables of interest, which are as follows: (a) demographic and medical information variables, (b) HIV/AIDS-related stigma, (c) psychological distress, (d) social support, (e) health-related quality of life, (f) social discriminati on, and (g) perceived patient-centere d cultural sensitivity in health care experienced. The following measures were included in the AB5. Demographic and Medical Information Variables Demographic and medical information questionnaire (DMIQ). The DMIQ assessed the selected demographic (e.g., age, gender, race, sexual orientation, rela tionship status, social class) and medical characterist ics (e.g., current HIV/AIDS disease status, usage of HAART or other HIV/AIDS-related medications) of the partic ipants. Please refer to Appendix B for a copy of the DMIQ. HIV/AIDS-Related Stigma Measures AIDS stigma measure (ASM; Ramirez-Valles, 2007). The ASM is a newly developed 44-item, 4-point Likert-type scal e (1 = Strongly Disagree to 4 = Strongly Agree) that assesses HIV/AIDS-related stigma along three dimensions: (a) perc eived stigma, (b) experience of stigmatization, and (c) internaliz ed stigma. Item ratings are averaged to yield an overall score, with higher scores indicating more intense experiences of HIV/AIDS-related stigma. Sample 5 Full names of measures (i.e., AIDS stigma measure ) have been provided here for the reader. However, in the actual online survey, full names of measures were removed. 64

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items include the following: Many people would not want to be friends with someone with HIV/AIDS (Perceived Stigma Subscale); People tr eat me differently when they find out I have HIV/AIDS (Experiences of Stigma tization Subscale); and I some times feel ashamed of having HIV/AIDS (Internalized Stigma Subscale). A ccording to Ramirez-Va lles (2007), preliminary analyses with this measure indicate good re liabilities for each of the subscales ( = 0.96, 0.81, 0.88, 0.93, respectfully). In the present study, Cronbach s alpha calculated for the subscales that were combined into a total score was 0.98. In addition, other measures of stigma (i.e., HIV Stigma Scale-Revised and HIV S tigma Scale-Perceived) were included in the AB to obtain validity data on the newer develo ped ASM measure. Only total scores from the ASM were used to assess HIV/AIDS-related stigma. Please re fer to Appendix C for a copy of the ASM. HIV stigma scale-revised (HSS-R; Bunn, Solomon, Miller, & Forehand, 2007). The HIV Stigma Scale (HSS) was orig inally developed by Berger, Fe rrans, and Lashley (2001) from the literature on stigma and ps ychosocial aspects of living with HIV/AIDS to measure PLWHAs perceptions of stigma. Recently, Bunn et al. (2007) revised HSS (referred to here in as the HSSR) by reducing the number of items and retaining the original four factors but renaming one of the subscales. These four f actors are as follows: (a) Enact ed Stigma (formerly called Personalized Stigma), (b) Disclosure Concerns, (c) Negative Self-Image, and (d) Concern With Public Attitudes. The HSS-R is a 32-item, 4-point Likert-type scale (1 = Strongly Disagree to 4 = Strongly Agree) measuring how stigmatized PLWHA feel across its four dimensions of stigma described above. Subscale scores are co mputed by summing the responses to the items associated with that subscale (after reverse-coding two of the items), while a generalized stigma score is calculated based on the sum of the respon ses to all items. Higher scores indicated more intense perceptions of stigma. Sample items for each of the subscales are as follows: I have lost 65

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friends by telling them that I have HIV/AIDS (Enacted Stigma); I worry people who know I have HIV/AIDS will tell others (Disclosure Con cerns); Having HIV/AIDS is disgusting to me (Negative Self-Image); and Most people belie ve a person who has HIV/AIDS is dirty (Concern With Public Attitudes). Cronbachs alph as for the subscales reported by Bunn et al. ranged from 0.90 to 0.97, and the Cronbachs alpha for the overall scale was reported as 0.95. These data indicate that the HSSR has very good internal consistency. These authors also noted high correlations between the HSS-R and ot her psychosocial measures (e.g., Stigma Consciousness Questionnaire, Discrimination Scale, and Rosenbergs Self-Esteem Scale), which demonstrates its validity. With the present sample, Cronbachs alpha was 0.96 for HSS-R items. Please refer to Appendix H for a copy of the HSS-R. HIV stigma scale-perceived (HSS-P; Wight, Aneshensal, Murphy, Miller-Martinez, & Beals, 2006). The HSS-P measure (referred to simply as the HIV Stigma Scale in the Wight et al. article) was developed based upon Sowell, Seal s, Moneyham, Demi, Cohen, and Brakes (1997) study of women with HIV living in rural communiti es for seven of the items, and two additional items were derived from separate qualitative interviews. Wight et al. reported that from these two sources, they developed the HSS-P, a 9-item, 4-point Likert-type scale (1 = Str ongly Disagree to 4 = Strongly Agree) to assess perceptions of HIV stigma. Item ratings were averaged to yield an overall score, with hi gher scores indicating more in tense experiences of perceived stigma. Sample items include, Feel blamed by others, Feel people avoid you, and Fear your family will reject you. With regard to validity, Wight et al. reported that perceived stigma items were related positively to scores on personal stig ma scales in samples of persons living with HIV, and reported Cronbachs alpha for this scale was 0.84. In the present sample, Cronbachs alpha for HSS-P items was 0.86. Please refer to the Appe ndix I for a copy of the HSS-P. 66

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Psychological Distress Mental health inventory (MHI); Veit & Ware, 1983). The MHI is a 38-item, 6-point Likert-type scale (1 = Extremely happy, could not have been more satisfied or pleased/ Always/ All of the time / Extremely so, to th e point where I could not take care of things/ Yes, constantly to 6 = Very dissatisfied, unhappy most of the ti me/ Never/ Not bothered at all / No, never) developed as part of the National Health Insurance study to determine the degree of psychological distress and psychological well-being among participants. Items are positively scored on a 0-100 scale. A summary score, called the Mental Health Index, denotes overall mental wellness. There are also highe r order subscales that measure psychological distress and psychological well-b eing, and five lower order s ubscales that measure anxiety, depression, loss of behavioral and emotional contro l, positive affect, and emotional ties. For the Mental Health Index and the psychological we ll-being subscales, higher scores signify a healthier mental state. For the psychological di stress subscales, higher sc ores indicate a poorer mental state. Sample items include: During the past month, how much of the time have you been a very nervous person? (Anxiety Subscale); During the past month, how much of the time did you feel depressed? (Depress ion Subscale); During the past month, how much of the time have you felt emotionally stable? (Behavioral/E motional Control Subscale); During the past month, how much of the time have you felt calm a nd peaceful? (Positive Af fect Subscale); and During the past month, how much of the time have you felt loved and wanted? (Emotional Ties Subscale). Veit and Ware (1983) demonstrated both reliabil ity and validity of th is measure in their original work with 5,089 participants living in 6 communities representing the four US census regions. Cronbachs alpha was reported by these authors to range from 0.83 to 0.91 for scales based on the five lower order factors and from 0.92 to 0.96 for scales based on the two higher 67

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order factors and the Mental Health Index. In a sample of 119 PLWHA in Hong Kong, Mak, Cheung, Law, Woo, Li, & Chung (2007), reported Cronbachs alphas of 0.91 for psychological distress and 0.93 for psychological well-being subscales. In the pr esent study, only total scores on the psychological distress subscale from the MHI was used to assess psychological distress. Alpha for psychological distress subscale scores was 0.96. Please re fer to Appendix D for a copy of the MHI. Social Support Medical outcomes study social support survey (MOS-SSS; Sherbourne & Stewart, 1991). The MOS-SSS is a 22-item, 5-point Likert-type (1 = None of the Time to 5 = All of the Time) that evaluates social support. Th is instrument was originally developed for participants in the Medical Outcomes Study (MOS ), a two-year study of patients with chronic conditions, such as diabetes, hypertension, coronary heart disease, and/or depression (for a complete review, please refe r to Tarlov, Ware, Greenfield, Nelson, Perrin, & Zubkoff, 1989). Participants first identify approximately how many close friends and relatives they have and rate their social support system over four domains, in cluding: (a) tangible supp ort, (b) affectionate support, (c) positive social interaction, and (d) em otional/informational support. Item ratings are summed to form a total score, with higher ratings indicating greater levels of social support. Sample items include the following: Someone to help you if you were confined to a bed? (Tangible Support Subscale); Someone who shows you love and affection (Affectionate Support Subscale); Someone to get together with for relaxation (Posi tive Social Interaction Subscale); and Someone to c onfide in or talk to about yourself or your problems? (Emotional/Informational Support Su bscale). In terms of validity, social support scores were correlated negatively with mental health scores in Sherbourne and Stewar ts original study with 2,987 patients. These authors also reported Cronb achs alpha ranging across subscales from 0.91 68

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to 0.97. In a sample of 152 adults dually diagnosed with severe mental illness and substance use disorder, Meade (2006) noted a Cronbachs alpha of 0.90 for the entire measure. In the present study, Cronbachs alpha calculated for the subscales that were co mbined into a total score was 0.92. Only total scores from the MOS-SSS were used to assess social support. Please refer to Appendix E for a copy of the MOS-SSS. Health-Related Qu ality of Life The world health organization quality of life-bref (WHOQOL-BREF; WHO, 1998). The WHOQOL-BREF is a 26-item, 5 point Like rt-type scale (1 = Very Poor/ Very Dissatisfied / Not at all/ Never to 5 = Very Good/ Very Satisfied / An Extreme Amount / Always) that assesses health-related quality of life across four domains. The four domains are: (a) physical health and level of i ndependence (seven items assessing areas such as presence of pain and discomfort, dependence on substances or treatments, energy and fatigue; mobility, sleep and rest of daily living, and perceived working capacity), (b) psychological well being (eight items assessing area s such as affect, bot h positive and negative self-concept, higher cognitive functions; body image and spirituality), (c ) social relationships (three items assessing areas such as social contacts, family support and ability to look after fa mily; sexual activity), and (d) environment (eight items assessing areas such as freedom, quality of home environment, physical safety and security and financial status, involvement in recreational activity, health and social care, quality and accessibility ). Two additional items that are examined separately include one which asks about the individuals overall pe rception of quality of life and the other which asks about the individuals overall perception of his or her healt h. The domain scores are scaled in a positive direction (i.e., higher sc ores denote higher quality of life). The WHOQOL group (1998) reported Cronbach alpha values for each of the four domain scores ranging from 0.66 (Social Relationships Domain) to 0.84 (Phys ical Health Domain). In a 69

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study assessing health-related quality of life using the WHOQOL-BREF in 224 Taiwanese patients with HIV infection, Hsiung, Fang, Ch ang, Chen, and Wang (2005) reported internal consistencies across the domains of this m easure ranging from 0.75 and 0.86. With respect to validity, these authors also noted good correlations ( r = 0.48) between the physical component summary of the 36-Item Short Form Health Su rvey (SF-36) and the physical domain of the WHOQOL-BREF, as well as between the mental component summary of the SF-36 and all four domains of the WHOQOL-BREF ( r range = 0.60-0.75). In the present study, Cronbachs alpha calculated for the subscales that were combined into a total score was 0.89. Only total scores from the WHOQOL-BREF were used to assess health-related quality of life. Please refer to Appendix F for a copy of the WHOQOL-BREF. Social Discrimination Experiences of social discrimination (ESD; Diaz, Ayala, Bein, Henne, & Marin, 2001). The ESD measure was referred to in the Diaz et al. (2001) study as the experiences of homophobia, racism, and poverty. This measure wa s slightly adapted in the present study to capture a broader lesbian, gay, and bisexual audien ce, in contrast to th e target group of Latino non-heterosexual males for which the measure wa s originally developed. The only two minor modifications that were made to the s ubscale on homophobia was to exclude the word effeminate and to replace the term homosexual with sexual orientation. The ESD is a 25item, 4-point Likert-type scale (1 = Never to 4 = Many times) that examines three dimensions of social discrimination including: (a) homophobia, (b) racism, and (c) financial hardship. Item ratings are averaged to yield an overall score, with highe r scores indicating more frequent experiences of social discrimination. Sample items from each of the subscales include the following: As you were growing up, how ofte n did you feel that your homosexuality hurt and embarrassed your family? (Homophobia Subscal e); How often have you been turned down 70

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for a job because of your race or ethnicity? (R acism Subscale); and In the last 12 months, how often have you had to borrow money from a friend or relative to get by fi nancially? (Financial Hardship Subscale). In terms of validity, with their sample of 912 Latino gay men living in New York City, Miami, and Los Angeles, Diaz, Ayala, and Bein (2004) re ported that all three subscales of the ESD were generally correlated positively with psychological distress. Diaz et al. (2001) reported high levels of internal consis tency for each of the subscales of the ESD: Homophobia ( = 0.75); Racism ( = 0.82); and Poverty ( = 0.72). In the present study, Cronbachs alpha calculated for the subscales th at were combined into a total score was 0.88. Only total scores from the ESD were used to assess experiences of soci al discrimination. Please refer to Appendix G for a copy of the ESD. Patient-Centered Culturally Sensitive Health Care Tucker-culturally sensitive healthcare inventory-patient form (T-CSHI-PF; Tucker, Mirsu-Paun, van den Berg, Ferdinand, Jones, Cu rry et al., 2007). The T-CSHI-PF is a 129-item, 4-point Likert-type scale (1 = S trongly Disagree to 4 = Strongly Agree) used to measure the level of patient-centered cultural sensitivity perceive d in the health care that individuals receive from their health care providers and clinic office staff members, and in their clinic physical characteristics and policies at their health care ce nter or site. Items rela te to three components: (a) provider behaviors and attitudes, (b) clinic office staff memb er behaviors and attitudes, and (c) clinic physical environmental characteristic s and policies. Originally developed and pilot tested as three separate race/ ethnicity-specific forms for African American patients, nonHispanic White patients, and Hispanic patients (with English and Spanish forms), the newly revised version of the T-CSHI-PF combines all three of these separate race/ethnicity-specific forms and excludes items that would have been redundant in the combining process. Sample 71

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items from each of the components include, Is compassionate or shows that he or she cares about how I feel (Health Care Provider Behavior and Attitudes Component), Are skilled at working with people (Clinic Office Staff Be haviors and Attitudes Component), Is a comfortable and relaxing place or Has the policie s posted regarding the order in which patients are seen (Health Care Physical Environment Characteristics and Polic ies Component). Item ratings are averaged to yield an overall score, with higher scores indica ting greater experiences of perceived cultural sensitivity. Discriminant vali dity was evidenced in the present study by the fact that social desirability was uncorrelated with T-CSHI-PF scores ( r = .13, p = .70). With respect to the original forms, Tucker et al. reported Cronbachs alphas for the African American and non-Hispanic White American patient form s ranging from 0.71 to 0.96 and six month testretest and split-half reliab ilities being 0.92 and 0.99, respectf ully. In the present study, Cronbachs alpha calculated for the subscales th at were combined into a total score was 0.98. Only averaged total scores of the three subcom ponents from the T-CSHIPF was used to assess perceived patient-centered cultural sensitivity in health care experienced. Please refer to Appendix K for a copy of the T-CSHI-PF. Social Desirability Marlowe-Crowne social desirability scale short form C (MCSDS-SFC; Crowne & Marlowe, 1960). The MCSDS-SFC, a condensed version of Marlowe and Crownes original measure, was included to examine social desi rability. Specifically, the MCSDS-SFC assesses the tendency for individuals to think or act in ways that conform to soci etal norms. It is comprised of items (e.g., No matter who Im talking to, Im always a good listener, and I have never deliberately said something to hurt someones feeli ngs) that describe highly desirable, culturally approved behaviors, but have lo w probability of occurrence. Re spondents endorse either True or False across 13 different statements. One poin t is scored for each re sponse in the socially 72

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desirable direction, with scores ranging from 0 ( no social desirability) to 13 (highest social desirability). With rega rd to validity, Robinette (1991) re ported that MCSDS-SFC scores were related positively to scor es on the L (Lie) scale and the K (correction) scale of the Minnesota Multiphasic Personality Inventory (MMPI) in a sample of 481 military trainees. In their original work on the MCSDS, Marlowe and Crowne reporte d an internal consiste ncy of 0.88 and a testretest stability coefficient of 0.89. Correlations between the original and Short Form C have been noted at 0.93 (Reynolds, 1982). Recently, C ourtenay-Quirk, Wolitski, Parsons, and Gomez (2006) reported a Cronbachs alpha for this measure of 0.71 in a sample of 456 HIV-positive men who have sex with men. With the present study, Cronbachs alph a for this measure was also 0.71. Please refer to Appendix J for a copy of the MCSDS-SFC. 73

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Table 3-1. Demographic characteristics of the final participant sample Characteristics N % Gender Men Women 123 70 64 36 Race Caucasian American/White African American/Black Hispanic/Latino/a Asian American/Pacific Islander Multiracial or Other American Indian/Native American 79 77 15 11 8 3 41 40 8 6 4 1 Sexual Orientation Exclusively Heterosexual Exclusively Gay/Lesbian Bisexual Mostly Gay/Lesbian Mostly Heterosexual 89 65 16 15 8 46 34 8 8 4 Relationship Status Single Committed Relationship Married Divorced Widowed Separated 113 36 26 10 6 2 59 19 13 5 3 1 Social Class Working Class Middle Class Lower Class Upper-Middle Class Upper Class 66 62 49 11 5 34 32 25 6 3 HIV Disclosure Yes No 177 16 92 8 Note. N = 193. 74

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75 Table 3-2. Medical characteristics of the final participant sample Characteristics N % Mode of Transmission Male-to-Male Sexual Contact High Risk Heterosexual Contact Injection Drug Use Do Not Know High Risk Heterosexual Contact and Injection Drug Use Combined Other 90 66 13 11 8 5 47 34 7 6 4 2 HIV/AIDS Status Asymptomatic Symptomatic Have AIDS 150 22 21 78 11 11 Past HAART Use Yes No 137 56 71 29 Current HAART Use Yes No 112 81 58 42 Other HIV Medications Yes No 98 95 51 49 Note: N = 193; HAART = Highly Active Antiretroviral Therapy; Other modes of transmission identified by participants included blood transfusion, childbirth, low risk heterosexual contact, and being raped.

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CHAPTER 4 RESULTS This chapter presents the results of the analyses addre ssing the hypotheses and exploratory research questions set forth in this study. The results are divided into six major parts in this chapter. First, preliminary analyses condu cted prior to analyzing the descriptive data for all of the major study variables are presented. S econd, the descriptive data for all of the major variables in the present study are reported. Third, the results of the preliminary Pearson productmoment correlations (hereinafter referred to simply as Pears on correlations) calculated to determine whether there were any significant co rrelations among the inve stigated variables of interest and to examine the relationship between social desirability and the other studied variables are described. Fourth, th e results of the partial correla tions performed to address the first and second hypotheses in this study are presented. Fifth, the re sults of the two hierarchical multiple regressions conducted to test the first and second exploratory research questions are described. In addition, the plot of the regressi on lines showing how the significant interaction between social support and human immunodefi ciency virus/acquired immune deficiency syndrome (HIV/AIDS)-related stigma influence psychological distress and the plot of the regression lines showing how the significant in teraction between perceived patient-centered cultural sensitivity in health care experienced and HIV/AIDS-related stigma influence healthrelated quality of life are presented. Sixth, the results of a multiple linear regression to examine the third exploratory research question are prov ided. All statistical analyses were performed using the Statistical Package for So cial Science (SPSS) version 15. Preliminary Analyses Prior to conducting the analyses to addre ss the hypotheses and exploratory research questions, the demographic characteristics (e .g., age, gender, race, social class, sexual 76

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orientation) and variables of in terest (HIV/AIDS-related stigma psychological distress, social support, health-related quality of life, experiences of social discrimination, and perceived patientcentered cultural sensitivity in health care experienced) were examined for accuracy of data entry, missing values, and fit between their dist ributions and the assumptions of multivariate analyses. The assumption of normality was met by verifying that there was no significant skewness or kurtosis, and by producing and in specting histograms and normal and detrended probability plots. Linearity and homoscedastici ty were verified by producing and inspecting bivariate scatterplots. In addi tion, inspection of the correlatio n matrix revealed no bivariate correlations above 0.70 among the variables of interest, indicating that mu lticollinearity did not exist. Descriptive Statistics for the Major Investigated Variables Descriptive statistics for the present sample (see Table 4-1) were generally comparable to sample means presented in prev ious studies. More specifically, the present samples mean for HIV/AIDS-related stigma as measured by the AIDS Stigma Measure (ASM) was 2.38 ( SD = 0.84), which is similar to the mean of 2.42 ( SD = 0.92) obtained from a sample of 643 gay and bisexual Latino men who live in ei ther Chicago, Illinois or San Fr ancisco, California (RamirezValles, 2007). The mean psychologi cal distress score from the Mental Health Inventory (MHI) in the present sample was 47.18 ( SD = 26.41), which is slightly highe r than scores on this measure that were previously reported ( M = 41.90, SD = 13.00) in a study involving a sample of 115 persons living with HIV in the Los Angeles metropolitan area (Murphy, Marelich, Hoffman, & Steers, 2004). The present sample had a mean score of 3.03 ( SD = 1.29) on the Medical Outcomes Study Social Support Survey (MOS-SSS), which is simila r to, though slightly lower than scores on this measure that were previously reported ( M = 3.20, SD = 1.06) by Mak, Cheung, Law, Woo, Li, 77

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and Chung (2007) in a study involving a sample of 119 HIV-positive individuals living in China. The mean health-related quality of life scor e as assessed by the World Health Organization Quality of Life-Bref (WHOQOL-BREF) for the present sample was 49.86 ( SD = 26.09), which is comparable to reported scores on this measure ( M = 50.88, SD = 22.75) in a study involving a sample of 224 patients with HIV infection residing in Taiwan (Hsiung, Fang, Chang, Chen, & Wang, 2005). With regard to experiences of social discrimination, Bianchi, Zea, Poppen, Reisen, and Echeverry (2004) reporte d a mean score of 1.90 ( SD = 0.73) on the Experiences of Social Discrimination (ESD) measure in a study of 140 HIV-positive immigrant Latino gay men living in New York City or Washington, DC. In contrast the mean experiences of social discrimination score on the ESD for the pr esent sample was 1.61 ( SD = 0.65), which is lower than that found by Bianchi and colleagues. This difference in mean scores may be a reflection of the varied sexualities, mixed gender, and ethnic diversity present in the presen t sample in comparison to the Bianchi et al. study, which focused entirely on immigrant Latino gay men. In the present study, the mean perceived patientcentered cultural sensitivity in health care experienced score as measured by the Tucker-Cul turally Sensitive Healthcare Inventory-Patient Form (T-CSHI-PF) was 2.67 ( SD = 0.79), which is slightly lower than what was found by Tucker, Mirsu-Paun, van den Berg, Ferdinand, Jone s, Curry et al. (2007) in their community sample of 179 African American and non-Hispan ic white American patients. These authors reported means and standard deviations for all three subcomponents (e.g., provider behaviors and attitudes, clinic office staff me mber behaviors and attitudes, a nd clinic physical environmental characteristics and policies) of th e T-CSHI-PF that ranged from 2.94 ( SD = 0.37) to 3.39 ( SD = 0.50) for the non-Hispanic white American patients and 3.11 ( SD = 0.52) to 3.26 ( SD = 0.54) for the African American patients in their sample. 78

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With respect to social desirability, Proesc holdbell, Roosa, and Nemeroff (2006) reported a mean score of 3.48 (no standard deviation reporte d) on the Marlowe-Crowne Social Desirability Scale-Short Form C (MCSDS-SFC ) in a study involving 348 gay and bisexual men living in a community in the southwest. The mean score on the MCSDS-SFC reported by Proescholdbell et al. is lower than what was found in the present sample ( M = 4.03, SD = 0.96) for this measure. Results of Preliminary Pearson Correlations Before conducting tests of the hypotheses and ex ploratory research questions, preliminary Pearson correlations were calculated to determin e whether there were a ny significant correlations among the investigated variables of interest and to examine th e relationship between social desirability and the other studied variables. As presented in Table 4-2, HIV/AIDS-related stigma scores (as measured by the AIDS Stigma Measur e (ASM) only) were shown to have a significant positive correlation with psychological distress scores ( r = .58, p = .00) and experiences of social discrimination scores ( r = .59, p = .00). As level of HIV/AIDS-rela ted stigma increased, level of psychological distress and experiences of social discrimination also increased. HIV/AIDS-related stigma scores were also shown to have a sign ificant negative correla tion with social support scores ( r = -.67, p = .00), health-related qua lity of life scores ( r = -.61, p = .00), and perceived patient-centered cultural sensitivity in health care experienced scores ( r = -.58, p = .00); that is, as level of HIV/AIDS-related stig ma increased, levels of social support, health-rela ted quality of life, and perceived patient-centered cultural sensitivity in health care experienced decreased. Psychological distress scores were shown to have a significant nega tive correlation with social support scores ( r = -.61, p = .00), health-related quality of life scores ( r = -.55, p = .00), and perceived patient-centered cultural sensitivity in health care experienced scores ( r = -.60, p = .00). As level of psychological distress increased, le vels of social support, health-related quality of life, and perceived patient-centered cultural sensitivity in health care experienced decreased. 79

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Furthermore, psychological distress scores were shown to have a significant positive correlation with experiences of social discrimination scores ( r = .40, p = .00). Thus, as level of psychological distress increased, level of experiences of social discrimination increased as well. Social support scores were shown to have a significant positive relationship with healthrelated quality of life scores ( r = .59, p = .00) and perceived patient-centered cultural sensitivity in health care experienced scores ( r = .52, p = .00). As level of social support increase d, levels of health-related quality of life and perceived patient-centered cultural sensitivity in health care experienced also increased. Moreover, social sup port scores were shown to have a significant negative relationship with experiences of social discrimination scores ( r = -.57, p =.00); that is, as level of social support increas ed, level of experiences of so cial discrimination decreased. Health-related quality of life scores were shown to have a significant positive relationship with perceived patient-centered cultural sensitivity in health care experienced scores ( r = .59, p = .00) and a significant negative rela tionship with experiences of so cial discrimination scores ( r = .57, p = .00). As level of health-related quality of life increased, level of perceived patientcentered cultural sensitivity in health care experienced also increased, while level of experiences of social discrimination decrease d. In addition, experiences of soci al discrimination scores were shown to have a significant ne gative relationship with percei ved patient-centered cultural sensitivity in health care experienced scores ( r = -.45, p = .00); that is, as le vel of experiences of social discrimination increased, le vel of perceived patient-centered cultural sensitivity in health care experienced decreased. The correlation analysis also revealed that soci al desirability scores were not significantly correlated with any of the study variables, suggesting that participants were not responding to the instruments to assess these variab les in a socially desirable manner. 80

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Links between demographic variables and the va riables of interest were also examined using Pearson correlations in orde r to identify potential covariates to be entered in subsequent analyses. As shown in Table 4-1, increased age showed a significant positive correlation with HIV/AIDS-related stigma scores ( r = .27, p = .00) and significant ne gative correlations with social support scores ( r = -.21, p = .00), health-related quality of life scores ( r = -.26, p = .00), and perceived patient-centered cultural sensitivity in health care experienced scores ( r = -.16, p = .00); that is, as age increased, le vel of HIV/AIDS-related stigma also increased, but levels of social support, health-related quality of life, and perceived patien t-centered cultural sensitivity in health care experienced decreased. Gender showed significant positive correlations with HIV/AIDS-related stigma scores ( r = .50, p = .00), psychological distress scores ( r = .41, p = .00), and experiences of social discrimination scores ( r = .17, p = .02), as well as significant ne gative correlations with social support scores (r = -.52, p = .00), health-related quality of life scores ( r = -.54, p = .00), and perceived patient-centered cultural sensitivity in health care experienced scores ( r = -.51, p = .00). Women reported higher levels of HIV/AIDS -related stigma, psychological distress, and experiences of social discrimination than men. At the same time, women reported lower levels of social support, health-related quality of life, and perceived patien t-centered cultural sensitivity in health care experienced. Race showed significant positive correlations with HIV/AIDS-related stigma scores ( r = .59, p = .00), psychological distress scores ( r = .45, p = .00), and experiences of social discrimination scores ( r = .56, p = .00), as well as significant ne gative correlations with social support scores (r = -.61, p = .00), health-related quality of life scores ( r = -.62, p = .00), and perceived patient-centered cultural sensitivity in health care experienced scores ( r = -.60, p =.00). 81

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African Americans reported higher levels of HIV/AIDS-related stigma, psychological distress, and experiences of social discrimination than any of the other races. Furthermore, African Americans reported lower levels of social support, health-related quality of life, and perceived patient-centered cultural sensitivit y in health care experienced. Sexual orientation showed significant positive co rrelations with HIV/AIDS-related stigma scores ( r = .33, p = .00) and psychological distress scores ( r = .21, p = .00), as well as significant negative correlations with social support scores ( r = -.36, p = .00), health-relat ed quality of life scores ( r = -.37, p = .00), and perceived patient-centered cultural sensitivity in health care experienced scores ( r = -.41, p = .00). Heterosexuals reported hi gher levels of HIV/AIDS-related stigma and psychological distress, an d they reported lower levels of social support, health-related quality of life, and perceived pati ent-centered cultural sensitivity in health care experienced than gay/lesbian participants. Thus, age, gender, r ace, and sexual orientation were included as covariates in all anal yses to adjust for their links wh en testing hypotheses and exploratory research questions. The variables of interest in the present study were not related significantly to social class. Results of Analyses to Test Hypotheses 1 and 2 Hypothesis 1 Hypothesis 1 stated that experiences of social discrimination would be related positively to HIV/AIDS-related stigma; that is, as experiences of social discrimina tion increase, HIV/AIDSrelated stigma would also increase To test Hypothesis 1, partial correlations, controlling for age, gender, race, and sexual orientation, were performed to explore the statistical significance and strength of the relationship betw een experiences of social discri mination (assessed by using total scores from the ESD) and HIV/ AIDS-related stigma (assessed by using total scores from the ASM only). As presented in Table 4-3, the part ial correlation of e xperiences of social 82

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discrimination scores with HIV/AI DS-related stigma scores was .47 ( p = .000). This finding is consistent with Hypothesis 1, indicating that leve l of experiences of social discrimination was related positively and significantly to HIV/AIDS-related stigma, ev en after controlling for age, gender, race, and sexual orientation. Hypothesis 2 Hypothesis 2 stated that perceived patientcentered cultural sensitivity in health care experienced would be related negatively to HIV/AIDS-related stigma ; that is, as perceived patient-centered cultural sensitivity in health care experienced increases, HIV/AIDS-related stigma would decrease. To test Hypothesis 2, pa rtial correlations, contro lling for age, gender, race, and sexual orientation, were performed to explore th e statistical signifi cance and strength of the relationship between the pair of variables of interest [e.g., perceived patient-centered cultural sensitivity in health care experienced (assessed by using averaged total scores of the three components the Provider Behaviors and Attitude s, Office Staff Behaviors and Attitudes, and Center Policies and Physical Environment Characteristics of the T-CSHI-PF ) and HIV/AIDSrelated stigma (assessed by using total scores from the ASM only)]. As shown in Table 4-3, the partial correlation of perceived patient-centered cultural sensitivity in health care experienced scores with HIV/AIDS-relate d stigma scores was -.63 ( p = .000). This finding is consistent with Hypothesis 2, indicating that level of perceived patient-centered cultu ral sensitivity in health care experienced was related negatively and significantly to HIV/AIDS-related stigma, even after controlling for age, gender, race, and sexual orientation. Results of Analyses to Te st Exploratory Research Questions 1, 2, and 3 Exploratory Research Question 1 The first exploratory research question under i nvestigation explored whether social support would moderate the relationship between HIV/AIDS-related stigma and psychological distress. 83

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To test exploratory research question 1, as suggested by Bar on and Kenny (1986) when testing for moderator effects, a hierarchical multiple regression was conducted to examine if social support (assessed by using total scores from th e MOS-SSS) moderated the relationship between HIV/AIDS-related stigma (assessed by using total scores from the ASM only) and psychological distress (assessed by using psychological distre ss subscale scores from the MHI). In this hierarchical multiple regression, the predicto r variable was HIV/AIDS-related stigma, the criterion variable was psychologi cal distress, and the interacti on term was social support X HIV/AIDS-related stigma. Previous researchers (e.g., Frazier, Ti x, & Barron, 2004; McClelland & Judd, 1993; Pedhazur & Schmelkin, 1991; Wampold & Freund, 1987) have identified statistical difficulties of detecting moderator effects and have noted th at the contribution of interaction terms above and beyond main effects will be small. Given th ese challenges, McClelland and Judd (1993) and Pedhazur and Schmelkin (1991) have recommended the use of liberal alphas (e.g., .10) in evaluating the significance of modera tor effects. Thus, in testing the first exploratory research question for the present st udy, alpha was set at .10. In this hierarchical multiple regression, centered variables (i.e., mean deviation scores) were used as recommended by Aiken and West (1991) in order to reduce multicollinearity between the interaction term and the main ef fects when testing for moderator effects. Demographic variables that had significant re lationships with psychological distress as determined by the Pearson correlations discus sed earlier (e.g., gende r, race, and sexual orientation) were entered togeth er at Step 1, HIV/AIDS-related stigma was entered at Step 2, social support was entered at Step 3, and the interaction term (socia l support X HIV/AIDS84

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related stigma) was entered at Step 4. A significant unstanda rdized coffecient ( B ) and R2 change for the interaction term indicates a si gnificant moderator effect. As presented in Table 4-4, in the first mode l, significant effects were found for women ( = .24, p < .05), African Americans/Blacks ( = .43, p < .001), and other races ( = .22, p < .05). This finding suggests that wome n had higher psychological distress scores than men and African Americans/Blacks and other races had higher ps ychological distress scores than Caucasian Americans/Whites. However, psychological distre ss scores did not di ffer significantly for heterosexuals, bisexuals, and gays/lesbians. In the second model, significan t effects remained for women ( = .17, p < .05), African Americans/Blacks ( = .20, p < .05), and other races ( = .14, p < .05). Psychological distress scores continued to be non-significant for he terosexuals, bisexuals, and gays/lesbians. When HIV/AIDS-related stigma was entered into the model, a significant effect ( = .43, p < .001) was found. This result suggests that as HIV/AIDS-re lated stigma scores in creased, psychological distress scores also increased substantially. In the third model, significant effects remained for women ( = .15, p < .10), African Americans/Blacks ( = .16, p < .10), and other races ( = .15, p < .05). A significant effect was also found for gays/lesbians ( = .15, p < .10) but remained non-significant for bisexuals and heterosexuals. In addition, HIV/AIDS-related stig ma was not statistically significant in the model. When social support was entered into the model, a significant effect ( = -.43, p < .001) was found. This result indi cates that as social support scor es increased, psychological distress scores decreased substantially. In the fourth model, significant effects remained for women ( = .16, p < .10), other races ( = .15, p < .05), gays/lesbians ( = .16, p < .05), and social support ( = -.42, p < .001). 85

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However, psychological distress sc ores did not differ for Africa n Americans/Blacks, bisexuals, and heterosexuals. In addition, HIV/AIDS-related stigma was not statistically significant in the model. When the interaction term social suppor t X HIV/AIDS-related stigma was entered into the model, a significant effect ( = -.12, p < .05) was found. Inspection of R2 change for the interaction term soci al support X HIV/AIDS-related stigma (R2 change = .01, p < .05) revealed a significant moderato r effect, indicating that social support moderated the relationship between HIV/AIDS-rela ted stigma and psychological distress. More specifically, the interac tion of social support and HIV/AIDS-re lated stigma was significant and accounted for 1% of the variance in psychological distress, above and beyond the variance accounted for by demographic covariates and the ma in effects of the interacting variables. In addition, the model as a whole was stat istically significant [F (8, 184) = 17.45, p < .001]. The plot of the regression lines showing how the significant interaction between social support and HIV/AIDS-related stigma influenced psychological distress is presented in Figure 41. In the first interaction line (+2 SD ), the simple slope was -6.51 (p = .12) and the intercept was 19.99. In the second interaction line (+1 SD ), the simple slope was -0.90 ( p = .38) and the intercept was 32.39. In the third interaction line (mean), the simple slope was 4.71 ( p = .00) and the intercept was 44.78. In the f ourth interaction line (-1 SD ), the simple slope was 10.32 ( p = .00) and the intercept was 57.18. In the fifth inte raction line (-2 SD), the simple slope was 15.92 ( p = .00) and the intercept was 69.58. Results of the interaction analysis suggest th at statistical significance in the simple slopes exists when social support is at its mean and lower as indicated above. In other words, as social support goes down, the slope of lines become more strongly positive, such that the relationship between HIV/AIDS-related stigma and psychological distress becomes stronger as social support 86

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declines. Thus, it appears that among participants in the pres ent study, social support is buffering the negative impact of HIV/AIDS-related stigma on psycholog ical distress. Exploratory Research Question 2 The second exploratory resear ch question under investigatio n explored whether social support and perceived patient-centered cultural sensitivity in health care experienced would moderate the relationship between HIV/AIDS-related s tigma and health-related quality of life. To test the second exploratory research que stion, a hierarchical multiple regression was conducted to examine if social support [(assesse d by using total scores from the MOS-SSS) and perceived patient-centered cultural sensitivity in health care experienced (assessed by using averaged total scores of the three component s the Provider Behaviors and Attitudes, Office Staff Behaviors and Attitudes, and Center Policies and Physical E nvironment Characteristics of the T-CSHI-PF) moderated the relationship be tween HIV/AIDS-related stigma (assessed by using total scores from the ASM) and health-relate d quality of life (assessed by using total scores from the WHOQOL-BREF)]. In this multiple re gression, the predictor variable was HIV/AIDSrelated stigma, the criterion variable was health-related quality of life, and the two interaction terms were social support X HI V/AIDS-related stigma and perceived patient-centered cultural sensitivity in health care experienced X HIV/ AIDS-related stigma. In testing the second exploratory research question, alpha was again set at .10. In this hierarchical multiple regression, centered variables were used in order to reduce multicollinearity between the interaction terms a nd the main effects when testing for moderator effects (Aiken & West, 1991). Demographic variab les that had significant relationships with health-related quality of life as determined by the Pearson correlations discussed earlier (e.g., age, gender, race, and sexual orientation) were entered together at Step 1, HIV/AIDS-related stigma was entered at Step 2, social support was entered at Step 3, perceived patient-centered 87

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cultural sensitivity in health care experienced wa s entered at Step 4, the first interaction term (social support X HIV/AIDS-related stigma) was entered at Step 5, and the second interaction term (perceived patient-centered cu ltural sensitivity in health care experienced) was entered at Step 6. Significant unsta ndardized coffecients ( B ) and R2 changes for the interaction terms indicate significant m oderator effects. As presented in Table 4-5, in the first mode l, significant effects were found for age ( = .11, p < .10), women ( = -.18, p < .05), and African Americans/Blacks ( = -.48, p < .001). This finding suggests that older participants had lowe r health-related quality of life scores than younger participants, women had lower health-related quality of life scores than men, and African Americans/Blacks had lower health-rela ted quality of life scores than Caucasian Americans/Whites. However, health-related quality of life scores did not differ significantly for all other races and by sexual orientation. In the second model, significant effect s remained for African Americans/Blacks ( = -.11, p < .10) and were now signifi cant for all other races ( = .09, p < .10). However, health-related quality of life scores did not differ significantly for older part icipants, women, and bisexual and gay/lesbian participants. When HIV/AIDS-related stigma was entered into the model, a significant effect ( = -.68, p < .001) was found. This result sugge sts that as HIV/AIDS-related stigma scores increased, health-related quality of life scores decr eased substantially. In the third model, the only significant effects that rema ined were for other races ( = .08, p < .10) and HIV/AIDS-related stigma ( = -.45, p < .001). When social support was entered into the model, a significant effect ( = .29, p < .05) was found. This result suggests that as social support scores increased, health-related quali ty of life scores in creased as well. 88

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In the fourth model, significant e ffects only remained for other races ( = .08, p < .10), HIV/AIDS-related stigma ( = -.45, p < .001), and social support ( = .30, p < .05). When perceived patient-centered cultural sensitivity in health care experienced was entered into the model, it was not statistically significant. In the fifth model, significant effects only remained for other races ( = .08, p < .10), HIV/AIDS-related stigma ( = -.46, p < .05), and social support ( = .30, p < .05). When the interaction term soci al support X HIV/AIDS-related stigma was entered into the equation, it was not statistical ly significant. Given this non-significant finding for the interaction term social support X HIV/AI DS-related stigma, it was not included in the last model. In the sixth and final model, significant e ffects remained for HIV/AIDS-related stigma ( = -.47, p < .001) and social support ( = .31, p < .05). When the interaction term perceived patientcentered cultural sensitivity in health care ex perienced X HIV/AIDS-related stigma was entered into the model, a significant effect ( = .08, p < .10) was found. Inspection of R2 change for the interaction term perceived patient-centered cultural sensitivity in health care experi enced X HIV/AIDS-related stigma (R2 change = .01, p < .10) revealed a significant moderator effect, indicat ing that perceived patient-centered cultural sensitivity in health care experienced modera ted the relationship between HIV/AIDS-related stigma and health-related quality of life. More sp ecifically, the interacti on of perceived patientcentered cultural sensitivity in health care experienced and HIV/AIDS-related stigma was significant and accounted for 1% of the variance in health-related quality of life, above and beyond the variance accounted for by demographic covariates and the main effects of the interacting variables. In additi on, the model as a whole was statis tically significant [F (10, 182) = 46.67, p < .001]. 89

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The plot of the regression lines showing how the significant interac tion between perceived patient-centered cultural sensitivity in health care experienced and HIV/AIDS-related stigma influenced health-related quality of life is presen ted in Figure 4-2. In the first interaction line (+2 SD ), the simple slope was -6.26 (p = .09) and the intercept was 104.14. In the second interaction line (+1 SD ), the simple slope was -8.89 (p = .00) and the intercep t was 82.46. In the third interaction line (mean), the simple slope was -11.53 ( p = .00) and the intercept was 60.78. In the fourth interaction line (-2 SD ), the simple slope was -14.17 ( p = .00) and the intercept was 39.10. In the fifth interaction line (-1 SD), the simple slope was -16.81 ( p = .00) and the intercept was 17.42, which appears only as a dash on the figure. Results of the interaction analysis suggest th at the simple slopes s hown in Figure 4-2 are all negative and statistically significant. As perceived patient-centered cultural sensitivity in health care experienced goes dow n, the slope of lines becomes more strongly negative. For instance, the negative relationship between HIV/ AIDS-related stigma and health-related quality of life becomes stronger as pati ent-centered cultural sensitivity in health care experienced declines. Thus, it appears that among participants in the pr esent study, patient-centered cultural sensitivity in health care experienced is bu ffering the negative impact of HIV/AIDS-related stigma on health-related quality of life. Exploratory Research Question 3 The third exploratory research question under investigation ex plored whether there were significant differences in HIV/AIDS-related stigma in association with the three demographic variables (e.g., gender, race, and sexual orient ation) that had signifi cant relationships to HIV/AIDS-related stigma as revealed in the hierarchical multiple regressions to test exploratory research questions 1 & 2. To examine this thir d exploratory research question, a multiple linear 90

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regression with HIV/AIDS-related stigma as the criterion variable and the three demographic characteristics previously identified as the predictor variables was performed. Results from the multiple linear regression (see Table 4-6) revealed significant effects for women ( = .18, p < .05), African Americans/Blacks ( = .55, p < .001), and other races ( = .20, p < .01). This finding suggests that women had higher leve ls of HIV/AIDS-related stigma scores than men and African Americans/Blacks and other races had higher levels of HIV/AIDS-related stigma scores than Caucasian Americans/Whites. However, HIV/AIDS-related stigma scores did not differ significantly for heterosexuals, bisexu als, and gays/lesbians. Inspection of R-square showed that 42% of the variance in HIV/AIDS-related stigma is accounted for by the model. In addition, the model as a whole was stat istically significant [F (5, 187) = 26.56, p < .001]. Overall, these findings suggest that there were significant differences in HIV/AIDS-related stigma scores in association with gender and race but not for sexual orientation. 91

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92 Table 4-1. Descriptive data for th e major variables of interest Variable MSD Possible Range Sample Range HIV/AIDS-Related Stigma 2.38 0.84 1-4 1.00-4.00 0.98 Psychological Distress 47.18 26.41 0-100 .00-100.00 0.96 Social Support 3.03 1.29 1-5 1.32-4.74 0.92 Health-Related Quality of Life 49.86 26.09 0-100 .00-100.00 0.89 Experiences of Social Discrimination 1.61 0.65 1-4 1.00-4.00 0.88 Perceived PatientCentered Cultural Sensitivity in Health Care Experienced 2.67 0.79 1-4 1.25-3.78 0.98 Social Desirability 4.03 0.96 0-13 1.00-9.00 0.71 Note. N = 193; Higher scores indicate higher levels of the construct assessed.

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Table 4-2. Pearson correlations for the major inves tigated variables includi ng social desirability ble 12345 Varia 67891011 1. HIV/AIDS-Related Stigma 2. Psychological Distress .58** 3. Social Support -.67** -.61** 4. Health-Related Quality of Life -.61** -.55** .59** 5. Experiences of Social Discrimination .59** .40** -.57** -.57** 6. Perceived Patient-Centered Cultural Sensitivity in Health Care Experienced -.58** -.60** .52** .59** -.45** 7. Social Desirability .00 .09 .01 .04 .12 .13 8. Age .27** .131 -.21** -.26** .07 .02 -.16* 9. Gender .50** .41** -.52** -.54** .17* -.03 -.51** .29** 10. Race .59** .45** -.61** -.62** .56** .10 -.60** .21** .62** 11. Sexual Orientation .33** .21** -.36** -.37** .05 -.14 -.41** .15* -.50** .37** Note. N = 193; p < .05. ** p < .01. 93

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Table 4-3. Partial correlations to test hypothesi s 1 and hypothesis 2 controlling for age, gender, race, and sexual orientation V a r i a b l e 123 1. HIV/AIDS-Related Stigma 2. Experiences of Social Discrimination .47*** 3. Perceived Patient-Centered Cultural Sensitivity in Health Care Experienced -.63*** Note. N = 193; Hypothesis 1 stated that experiences of social discrimination would be related positively to HIV/AIDS-related stigma; Hypothesis 2 stated that perceived patient-centered cultural sensitivity in health care experienced would be related negatively to HIV/AIDS-related stigma. Note. *** p < .001. 94

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Table 4-4. Moderating effect of social support (centered) on the relation between stigma (centered) and psychological distress to examine research question 1 Step Variable B t Total R2 Adjusted R2 R2 Change F Change dfs 1 Women African American/Black Other Race Bisexual Gay/Lesbian 13.28 23.25 14.68 3.74 6.45 .24 .43 .22 .06 .12 2.65** 4.19*** 3.08** .79 1.33 .27 .25 .27 13.81*** 5, 187 2 Women African American/Black Other Race Bisexual Gay/Lesbian HIV/AIDS-Related Stigma (HARS) 9.13 10.56 9.11 3.51 7.01 13.44 .17 .20 .14 .05 .13 .43 1.94* 2.14** 2.01** .80 1.57 5.64*** .38 .36 .11 31.84*** 1, 186 3 Women African American/Black Other Race Bisexual Gay/Lesbian HARS Social Support (SS) 8.05 8.39 9.92 4.54 8.06 3.04 -8.79 .15 .16 .15 .07 .15 .10 -.43 1.77* 1.74* 2.26** 1.07 1.85* .82 -3.63*** .42 .40 .04 13.14*** 1, 185 95

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96 Table 4-4. Moderating effect of so cial support (centered) on the relation between stigma (centered) and psychological distress to examine research question 1 (continued) Step Variable B t Total R2 Adjusted R2 R2 Change F Change dfs 4 Women African American/Black Other Race Bisexual Gay/Lesbian HARS SS SS X HARS 8.49 6.34 9.99 5.26 8.71 3.34 -8.71 -4.83 .16 .12 .15 .08 .16 .11 -.42 -.12 1.88* 1.30 2.29** 1.24 2.02** .92 -3.63*** -2.10** .43 .41 .01 4.41** 1, 184 Note. N = 193; HARS = HIV/AIDS-Related Stigma; SS = Social Support; E xploratory Research Question 1 examined whether social support would moderate the relationship between HIV/AIDS-related stigma and psychological distress; Predictor variables and the interac tion term were centered in the above regression analyses. p < .10. ** p < .05, *** p < .001.

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Table 4-5. Moderating effect of social support (centered) and cultural sensitiv ity (centered) on the relation between stigma ( centered) and quality of life to examine research question 2 Step Variable B t Total R2 Adjusted R2 R2 Change F Change dfs 1 Age Women African American/Black Other Race Bisexual Gay/Lesbian -.23 -9.76 -25.59 -3.36 3.22 3.42 -.11 -.18 -.48 -.05 .05 .06 -1.88* -2.20** -6.22*** -.81 .78 .81 .44 .42 .44 24.21*** 6, 186 2 Age Women African American/Black Other Race Bisexual Gay/Lesbian HIV/AIDS-Related Stigma (HARS) -.01 -4.93 -5.83 6.00 3.96 2.08 -20.99 -.01 -.09 -.11 .09 .06 .04 -.68 -.16 -1.49 -1.71* 1.90* 1.30 .67 -12.51*** .70 .68 .26 156.58*** 1, 185 3 Age Women African American/Black Other Race Bisexual Gay/Lesbian HARS Social Support (SS) -.05 -4.01 -4.48 5.33 3.22 1.45 -13.93 5.87 -.02 -.07 -.08 .08 .05 .03 -.45 .29 -.50 -1.25 -1.34 1.73* 1.09 .48 -5.36*** 3.48** .72 .70 .02 12.08** 1, 184 97

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Table 4-5. Moderating effect of social support (centered) and cultural sensitivity (centered) on the relation between stigma (c entered) and quality of life to examine research question 2 (continued) Step Variable B t Total R2 Adjusted R2 R2 Change F Change dfs 4 Age Women African American/Black Other Race Bisexual Gay/Lesbian HARS SS Perceived Patient-Centered Cultural Sensitivity in Health Care Experienced (PPCCSHCE) -.04 -4.03 -4.64 5.21 3.29 1.54 -14.07 6.07 -.65 -.02 -.07 -.09 .08 .05 .03 -.45 .30 -.02 -.47 -1.25 -1.36 1.67* 1.10 .51 -5.29*** 3.26** -.26 .72 .70 .00 .07 1, 183 5 Age Women African American/Black Other Race Bisexual Gay/Lesbian HARS SS PP-CCSHCE SS X HARS -.04 -4.11 -4.38 5.17 3.21 1.47 -14.18 6.13 -.88 .71 -.02 -.08 -.08 .08 .05 .03 -.46 .30 -.03 .02 -.45 -1.27 -1.27 1.65* 1.07 .48 -5.29*** 3.28** -.35 .43 .72 .70 .00 .18 1, 182 98

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Table 4-5. Moderating effect of social support (centered) and cultural sensitivity (centered) on the relation between stigma (c entered) and quality of life to examine research question 2 (continued) Step Variable B t Total R2 Adjusted R2 R2 Change F Change dfs 6 Age Women African American/Black Other Race Bisexual Gay/Lesbian HARS SS PP-CCSHCE PP-CCSHCE X HARS -.04 -3.47 -4.07 4.64 3.18 1.58 -14.52 6.31 -1.80 4.16 -.02 -.06 -.08 .07 .05 .03 -.47 .31 -.05 .08 -.41 -1.08 -1.20 1.49 1.07 .52 -5.46*** 3.40** -.71 1.75* .72 .70 .01 3.07* 1, 182 Note. N = 193; HARS = HIV/AIDS-Related Stigma; SS = Social Support; PP-CCSHCE = Perceived Patient-Centered Cultural Sensitivity in Health Care Experienced; In the sixth model, the interaction of SS X HARS was removed because it was non-significant in step 5. Exploratory Research Question 2 examined whether social support and percei ved patient-centered cultural sensitivity in health care experien ced would moderate the relationship between HIV/AIDS -related stigma and health-related quality of life; Predictor variables and the inter action term were centered in the above regression analyses. p < .10. ** p < .05. *** p < .001. 99

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100 Table 4-6. Multiple linear regression analysis with stigma and demographic variables to examine research question 3 Variable B t Total R2 Adjusted R2 F dfs Women Black Other Race Bisexual Gay/Lesbian .31 .94 .42 .02 -.04 .18 .55 .20 .01 -.02 2.17* 7.01*** 3.05** .13 -.31 .42 .40 26.56*** 5, 187 Note: N = 193; Dependent Variable = HIV/AIDS-Related Stigma; Explorat ory Research Question 3 examined whether there were significant differences in HIV/AIDS-related stigma in association with demographic variables. p < .05. ** p < .01. *** p < .001

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Figure 4-1. Plot of regression li nes showing how the significant interaction between social support (centered) and stigma (centered) influenced psychological distress 101

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102 Figure 4-2. Plot of regression li nes showing how the significant interaction between cultural sensitivity (centered) and stigma (c entered) influenced quality of life

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CHAPTER 5 DISCUSSION The purpose of the present study was to inve stigate the associations between human immunodeficiency virus/acquired immune defici ency syndrome (HIV/AID S)-related stigma and both psychological distress and health-relate d quality of life among persons living with HIV/AIDS (PLWHA) in the United States (US). In addition, whet her these associ ations were moderated by social support and perceived patient-centered cultural sensitivity in health care experienced was examined. The present study also explored whether th ere were significant differences in HIV/AIDS-related st igma in association with specific demographic variables (i.e., race, gender, and sexual orientation). This final chapter begins with a summary of the present studys findi ngs and interpretation of the results. Second, limitations of the pres ent study and future res earch directions are addressed. Third, implications of this resear ch for public health educators, healthcare professionals, and policy makers are discussed. Summary and Interpretation of Findings The theoretical framework used to guid e the present study was Goffman (1963) and Foucaults (1977, 1978) conceptualization of st igma. Based on this combined framework, the present study considered the social em beddedness of HIV/AIDS-related stigma and discrimination among PLWHA by examining: (a) whet her having higher levels of experiences of social discrimination (i.e., hom ophobia, racism, and financial ha rdship) was associated with higher levels of HIV/AIDS-related stigma, (b) whet her having higher levels of perceived patientcentered cultural sensitivity in health care expe rienced was associated with lower levels of HIV/AIDS-related stigma, (c) whether social support moderates the relationship between HIV/AIDS-related stigma and psychological distress, (d) whethe r social support and perceived 103

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patient-centered cultural sensitivity in health care experienced moderates the relationship between HIV/AIDS-related stigma and health-relat ed quality of life, and (e) whether there are significant differences in HIV/AIDS-related stigma in association with age, gender, race, sexual orientation, and social class. Pr ior to discussing the results of the hypotheses and the exploratory research questions, both expected and une xpected findings for the correlations among investigated variables of interest a nd demographic variables are presented. Correlations Among Investigat ed Variables of Interest The exploration of relationships among the inve stigated variables of interest revealed both expected and unexpected findings. Expected corre lations among the inves tigated variables of interest are presented first with unexpected correlations to follow. As expected, a significant positive relationshi p existed between HIV/AIDS-related stigma and psychological distress, which is consistent with results fro m previous empirical studies among PLWHA (Miles, Burchinal, Holditch-Davi s, Wasilewski, & Christian, 1997; Silver, Bauman, Camacho, & Hudis, 2003). Additionally, as anticipated, HIV/AIDS-related stigma showed a significant negative relati onship with social support and health-related quality of life, findings that are in line with past internat ional research conducted among HIV-infected populations (Ayarza & Reyes, 2002; Castle, Cornu, Dua, Herrera, Nadkarni, Ouedraogo et al., 2002; Ortega, Gonzales, & Liwanag, 2002). Consistent with other empirical studie s among PLWHA (Au, Chan, Li, Chung, Po, & Yu, 2004; Siegel & Schrimshaw, 2007), psychological distress was shown to have significant negative relationships with soci al support and health -related quality of life. In addition, a significant positive relationship existed between soci al support and health-related quality of life, which is similar to findings from previous studies among HIV-positive persons (Burgoyne & 104

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Renwick, 2004; Cowdery & Pesa, 2002; Swindells, Mohr, Justis, Berman, Squier, Wagener et al., 1999). The unexpected findings in the present study had to do with percei ved patient-centered cultural sensitivity in health care experienced and other investigated variables. The first unexpected finding was that psyc hological distress was shown to have a significant negative relationship with perceived patien t-centered cultural sensitivity in health care experienced. While unanticipated, this finding is in line with th e research of Evans, Ferrando, Rabkin, and Fishman (2000) in which an inverse association betw een strong, positive beliefs in health care professionals (e.g., doctors, nurses) and ps ychological distress was found among 173 HIVpositive gay and bisexual men. However, in the pr esent study, other health care characteristics (e.g., office staff members behavi ors and physical environmental ch aracteristics and policies) in addition to the patient-provider relationship that constituted the examined variable of perceived patient-centered cultural sensitivity in health care experienced was found to have a significant negative association with psychological distress. The second unexpected finding was that soci al support was signifi cantly and positively associated with perceived patient-centered cultura l sensitivity in health care experienced. In a sample of 40 Native Hawaiian and 40 white persons living with HIV in Hawaii, Kaopua and Mueller (2004) described that the Native Hawaiian participants in their sample emphasized an appreciation for health care providers who demonstrated unconditional acceptance and nonjudgmental support, suggesting that a positive re lationship may exist be tween participants experience with their health care provider a nd perceived social support. The finding from the Kaopua and Mueller study is consistent with the first subcomponent of the patient-centered cultural sensitivity health care model the subcom ponent that stresses the importance of health 105

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care providers and office staff members engaging in behaviors and displaying attitudes that enable patients to feel comforta ble with, trusting of, a nd respected by their he alth care providers and staff members and that enable them to feel that they and their cultures are respected (Tucker et al., 2007). The third unexpected finding was that health-related quality of life was shown to have a significant positive relationship with perceived patie nt-centered cultural sensitivity in health care experienced. Although unanticipated, it stands to reason that a positive relationship between health-related quality of life and perceived patient-centered cultural sensitivity in health care experienced might exist, given th at patient perceived satisfaction with their health care provider has been shown to be positively associated with health-related quality of life in prior nonHIV/AIDS-related research. For instance, Ashing-Giwa, Tejero, Kim, Padilla, and Hellemann (2007) found that among 703 breast cancer survi vors' satisfaction in the patient-doctor relationship and socio-ecological factors (i.e., social support, li fe stress, and social class) accounted for 45% of the variance in health-related quali ty of life. Unlike in the present study, however, in which associations between perceived patient-centered cultural sensitivity in health care experienced and health-relate d quality of life were investigated, the Ashing-Giwa et al. study examined associations betwee n health-related quality of life and patient satisfaction in the patient-doctor relationship. The fourth unexpected finding was that percei ved patient-centered cultural sensitivity in health care experienced was shown to have a significant negative relationship with experiences of social discrimination. Bird, Bogart, and Dela hanty (2004) examined the impact of perceived discrimination from health care providers on medication adherence among 110 persons living with HIV. Results from this study indicated a negative relationship between perceived 106

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socioeconomic status-related discrimination a nd adherence, but not perceived race-related discrimination and adherence. A larger st udy reported lower adherence among 2,484 French persons living with HIV who experienced discrimi nation from sexual partne rs related to their HIV-positive status (Peretti-Watel, Spire, Pierret, Lert, & Obadia, 2006). Although these findings are similar to what was found in the pres ent study, both of these studies generating these findings each measured only certain aspects of discrimination (i.e., fr om health care providers or sex partners) and were specifically focuse d on understanding how certain forms of discrimination may impact medication adherence among HIV-positive persons. In addition to the aforementioned finding that there was an inverse relationship between experiences of social discrimina tion and perceived patient-centered cultural sensitivity in health care experienced, several other unanticipated results were found in the present study with respect to experiences of social discri mination and other investigated va riables of interest. First, a significant positive relationship was found betwee n psychological distress and experiences of social discrimination. Even though this finding was not expected, it is consistent with the work of Diaz, Ayala, and Bein (2004) who showed a positive association between psychological distress and poverty (defined as recent experiences of financia l hardship) in a sample of 912 Latino, largely immigrant, gay men residing in New York City, Miami, or Los Angeles. Second, social support was shown to have a significant negative relationship with experiences of social discrimination. In a sim ilar vein, Schmitz and Crystal (2000) found an inverse association between social su pport and discriminatio n among 212 PLWHA who participated in the AIDS Community Care A lternatives Program throughout the state of New Jersey. However, the experience of discriminati on under investigation in the Schmitz and Crystal study included different discrimi nation areas (e.g., employment, housing, and medical care) from 107

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the social discrimination areas (e.g., homophobia, racism, and fi nancial hardship) that were examined in the present study. Third, health-related quality of life was shown to have a significant negative relationship with experiences of social discrimination. This finding is in line w ith the work of Wingood, DiClemente, Mikhail, McCree, Davies, Hardin et al. (2007) who found among their sample of 366 women living with HIV in Ge orgia or Alabama an inverse relationship between healthrelated quality of lif e and HIV-related discrimination. Un like in the present study whereby experiences of social discrimina tion was measured using a valid and reliable measure (ESD), the Wingood and colleagues study assessed HIV-relate d discrimination by compiling responses from three separate items that covered the domains of access to healthcare, job loss, and needing to relocate. It is noteworthy that in the present study the experience of social discrimination was not related specifically to HIV status as was the case in the Wingood et al. study. Correlations Among Investigated Variables of Interest and Demographic Variables The exploration of relationships among investig ated variables of interest and demographic variables also revealed both expected and unexpected findings. Expected correlations among investigated variables of intere st and demographic variables are presented first with unexpected correlations to follow. As anticipated, a strong positiv e relationship existed betwee n HIV/AIDS-related stigma and gender, with women reporting significantly higher levels of HIV/AIDS-related stigma than men, which has been found among previous samples of PLWHA (Carr & Gramling, 2004; Lekas, Siegel, & Schrimshaw, 2006; Sandelowski, Lambe, & Barroso, 2004). Also as expected, race showed a significant positive correlation with HIV/AIDS-related stigma, with African Americans/Blacks reporting higher levels of HIV/AIDS-related stigma than any of the other races in the present study, which is simila r to what was recently found by Sayles, Hays, 108

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Sarkisian, Mahajan, Spritzer, and Cunningham (2008) among their sample of 202 HIV-positive persons residing in two large US cities. In addition, a strong positiv e relationship existed between HIV/AIDS-related stigma and sexual orie ntation, with heterose xuals reporting higher levels of HIV/AIDS-related stigma than gay/lesbian participants, which was also found in the Sayles et al. study. Consistent with past research among late middl e-aged and older adults living with HIV in the US (Heckman, Heckman, Kochman, Sikkema Suhr, & Goodkin, 2002; Lovejoy, Heckman, Sikkema, Hansen, Kochman, Suhr et al., 2008), ag e showed significant ne gative correlations with social support and hea lth-related quality of life in the pres ent sample; that is, as the age of the participant increased, levels of social suppor t and health-related quality of life decreased. A strong negative relationship existed between gender and health-related quality of life with women reporting lower levels of h ealth-related quality of life than men, which is similar to the findings of Mrus, Williams, Tsevat, Cohn, and Wu (2005) in a study involving a sample of 202 female and 976 male patients living with HIV in the US or in Puerto Rico. Also in line with the work of Wingood et al. (2007), who examined th e relationship between a participants racial background and health outcomes among 366 African American and White women living with HIV in Georgia and Alabama, it was found in the present study that race showed a significant negative correlation with health-related quality of life, with African American women reporting lower levels of health-related quality of lif e than any of the other races. Additionally, a significant inverse association was found in the present study between sexual orientation and social support, with heterosexuals reporting lowe r levels of social s upport than gay/lesbian participants. In a non-probability sample of 373 HIV-positive mostly African American and Puerto Rican women in New York City who sel f-identified along a spectru m of sexual identities 109

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(e.g., from heterosexual only to homosexua l only), Cooperman, Simoni, and Lockhart (2003) found a significant negative relationship between sexual or ientation and social support, with lesbian/bisexual women re porting significantly greater soci al support from friends and groups/organizations than the heterosexual women in their study. As earlier mentioned, there were also several unexpected findi ngs in the present study with respect to the investigated variables of inte rest and demographic variables. One of these unexpected findings is that age showed a significant positive correlation with HIV/AIDS-related stigma, such that as age increased levels of HIV/AIDS-related stigma also increased. This finding is inconsistent with rese arch conducted by Emlet (2007) th at specifically investigated relationships among age, HIV-rela ted stigma, and patterns of di sclosure. In his study with 88 persons living with HIV, who ranged in age fr om 20-71 years old, Emlet found that differences in HIV-related stigma scores by age were not st atistically significant. However, due to the possibility of sampling bias, Emlet noted that resu lts from this study should be interpreted with caution given that all of his par ticipants were drawn from the same AIDS-service organization in the Pacific Northwest. Another unexpected finding in the present study is the finding of an inverse association between gender and social support, such that wo men reported lower levels of social support than men, which is contrary to the non-statistically significant relations hip that Viswanathan, Anderson, and Thomas (2005) found between gender and social support in their sample of 99 HIV-positive patients affiliated with an urban HIV/AIDS Center in the US. In the present study, an unexpected significan t positive association between gender and psychological distress was also found, with wo men reporting higher levels of psychological distress than men. While this fi nding was not expected, it is in line with the work of Sikkema, 110

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Kochman, DiFranceisco, Kelly, and Hoffman (2003) who found among their sample of 268 HIV-infected persons that the women in their study exhibited higher le vels of anxiety and traumatic stress (which they conceptualized as psychological distress) th an the men. However, it is important to point out that the participants in the Sikkema and colleagues study were recently coping with a number of AIDS-rela ted losses (according to these authors, the average number of losses was 30) that included losses of loved ones and/or friends, which likely impacted the level of anxiety and traumatic stress reported by these participants. It was also unanticipated that gender woul d show a significant positive correlation with experiences of social discrimination; however, in the present study, women reported more experiences of social discrimination than men. Some prior research (e.g., Bunting, 1996; Metcalfe, Langstaff, Evans, Paterson, & Reid, 1998) conducted with HIV-positive persons have only suggested that women face more discrimination than men. This finding in the present study provides some preliminary empirical evidence fo r the link between gender and experiences of social discrimination among a sample of PLWHA in the US. It is also surprising that race showed a signi ficant negative correlation with social support in the present study. Specifically, it was found th at African Americans reported lower levels of social support than any of the other races. This finding is contradictory to the previous findings of Tate, van den Berg, Hansen, Kochman, and Sikkema (2006) who observed no race-related differences in social support among their commun ity sample of 121 African American and White gay and bisexual HIV-positive men residing in M ilwaukee, Wisconsin or New York City. Race also showed a significant positive correlation wi th psychological distress in the present study. Specifically, it was found that African Americans reported higher levels of psychological distress than any of the other races. Heckman, Koch man, Sikkema, Kalichman, Masten, and Goodkin 111

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(2000) also found a positive association between race and psychological distress in their study with 72 late middle-aged and older African Amer ican and White men living with HIV/AIDS in the US. However, in the Heckma n et al. study, it was the White pa rticipants and not the African American participants who repor ted higher levels of psychological distress. In addition, race showed a significant positive correlation with e xperiences of social discrimination, such that African Americans reported higher levels of experiences of social discrimination than any of the other races in the present study. This result is similar to what was found in the Wingood et al. (2007) study mentioned earlier with the exception that these researcher s only measured HIVrelated discrimination and found th at it was the White women rather than the African American women who more likely to report HI V-related discrimination. The finding of a significant inverse association between sexual or ientation and healthrelated quality of life was also not expected. Specifically, it was found that heterosexuals reported lower levels of health-re lated quality of life than gay/le sbian participants Interestingly, to the author's knowledge, ther e are no current published US empirical studies that have investigated the relationship betw een these two particular variab les. In an international study conducted in the Netherlands that specifically assessed whether differences in health-related quality of life existed between heterosexual and homosexual men and women, Sandfort, de Graaf, and Bijl (2003) found that among their sample of 7,076 participants, there was a significant negative relationship between health-related quality of life and sexua l orientation. However, unlike in the present st udy where heterosexuals reported lower levels of health-related quality of life than those with other sexual orientations (i.e., ga y, lesbian), Sandfort et al. found among their sample that homosexual men but not le sbians had lower levels of health-related quality of life. 112

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The unexpected findings in the present study also include that sexual orientation showed a significant positive correlation with psychological distress, with heterosexual individuals reporting higher levels of psychological distress th an non-heterosexually identified persons. This finding was unexpected given that Cochran a nd Mays (2007) had recently shown among their sample of 2,272 adults with varying sexualities that homosexuals were more likely to report psychological distress than heterosexuals. Mo re specifically, after adjusting for possible confounding variables (e.g., demogra phic differences), these researchers found that women who identified as lesbian or bise xual had significantly higher levels of psychological distress in comparison to women who identified as exclus ively heterosexual. In addition, gay men and homosexually experienced heterosexual men reported significantly higher levels of psychological distress in comparison to exclusively heterosexual men. Finally, surprising significant negative correlations between several of the demographic variables (e.g., age, gend er, race, and sexual orientation) a nd perceived patient-centered cultural sensitivity in health care experienced were found. Prior to presenting these findings, it is noteworthy that the present study is the first of its kind to investigate associations between demographic variables and perc eived patient-centered cultural sensitivity in health care experienced among a sample of PLWHA. Thus, comparisons between prior research and the present study with respect to th ese relationships can not be ma de at this time. However, a summary of these specific findi ngs are presented below. First, age showed a significant negative correl ation with perceived patient-centered cultural sensitivity in health care experienced, sugges ting that older PLWHA may experience lower levels of perceived patient-centered cultural sensitivity in health care experienced in comparison to their younger counterparts. Second, gender sh owed a significant inverse association with 113

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perceived patient-centered cultural sensitivity in health care experienced, indicating that women may be more likely to experience lower levels of perceived patie nt-centered cultural sensitivity in health care experienced than men. Third, race showed a signif icant negative correlation with perceived patient-centered cultural sensitivity in health care experienced, suggesting that African Americans may be more likely to experience lower leve ls of perceived patient-centered cultural sensitivity in health care experienced than all ot her races or ethnicities. Fourth, sexual orientation showed a significant inverse asso ciation with perceived patient-c entered cultural sensitivity in health care experienced, indicati ng that heterosexuals were more likely to experience lower levels of perceived patient-centered cultural sensitivity in health care experience than all other sexual orientations. Taken together, these findi ngs suggest that older, African American, heterosexual females may be more likely to ex perience lower levels of perceived patientcentered cultural sensitivity in health care expe rienced than their counterparts. In the next section, a discussion of the pres ent studys results in relation to the hypotheses and exploratory research questions are presented. Hypotheses 1 and 2 Hypothesis 1 Hypothesis 1 proposed that experiences of so cial discrimination (i.e., homophobia, racism, and financial hardship) would be related positively to HIV/AIDS-related stigma; that is, as experiences of social discrimi nation increase, HIV/AIDS-related stigma would also increase. This hypothesis was supported as experience of social discrimination was found to have a positive and significant relationship with HIV/AIDS-related stigma. This finding suggests that PLWHA who experience highe r levels of social discrimination may be more likely to experience higher levels of HIV/AIDS-related stigma as well. Empirical evidence for the positive association between HIV/AIDS-related stigma and experiences of social discrimination has yet 114

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to be documented in the extent literature. This finding also provides some preliminary support for the concept of layered stigma (that various stigmata layer onto HI V/AIDS-related stigma). Hypothesis 2 Hypothesis 2 proposed that per ceived patient-centered cultural sensitivity in health care experienced would be related negatively to HIV/AIDS-related stigma ; that is, as perceived patient-centered cultural sensitivity in health care experienced increases, HIV/AIDS-related stigma would decrease. This hypothesis was supported as perceived patient-centered cultural sensitivity in health care experienced was found to have a negative and significant relationship to HIV/AIDS-related stigma. This finding indicates that PLWHA who experience higher levels of perceived patient-centered cultural sensitivity in health care experienced may be more likely to experience lower levels of HIV/ AIDS-related stigma. It also s uggests that perceived patientcentered cultural sensitivity in health care ex perienced may help to decrease the burden of HIV/AIDS-related stigma. However, it is impor tant to note that th e correlation between perceived patient-centered cultural sensitivity in health care experienced and HIV/AIDS-related stigma does not imply causation. Exploratory Research Questions 1, 2, & 3 Exploratory Research Question 1 Exploratory research question 1 as ked whether social support would moderate the relationship between HIV/AIDS-related stigma and psychological distress, such that the strength of the association between HI V/AIDS-related stigma and psychological distress would be lessened for PLWHA who reported hi gher levels of social support. This exploratory research question was supported as social support was f ound to have a significan t moderating effect on the relationship between HIV/AIDS -related stigma and psychological distress. This finding is consistent with previous research involving HIV-positive persons that has explored the 115

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moderating effect of social support (Hudson, Lee, Miramontes & Portillo, 2001). In addition, this finding supports past resear ch that holds that psychologi cal health and well-being is associated with higher levels of social support (Blaney, Goodkin, Morgan, Feaster, Millon, Szapocznik et al., 1990; Hays, Turner, & Co ates, 1992; Kurdek & Siesky, 1990; Leserman, Perkins, & Evans, 1992). Thus, having a strong sense of social support may help reduce the negative effects of HIV/AIDS-related stigma and ps ychological distress. Exploratory Research Question 2 Exploratory research question 2 asked whet her social support and perceived patientcentered cultural sensitivity in health care experienced would moderate the relationship between HIV/AIDS-related stigma and health-related qual ity of life, such that the strength of the association between HIV/AIDS-related stigma and health-related quality of life is lessened for PLWHA who report higher levels of social support and perc eived patient-centered cultural sensitivity in health care experienced. This expl oratory research questi on was partially supported as perceived patient-centered cultural sensitivity in health care experienced was found to have a significant moderating effect on the relationship between HIV/AIDS-related stigma and healthrelated quality of life. This finding provides some preliminary evidence for how perceived patient-centered cultural sensitivity in health car e experienced may serve as a protective factor against the detrimental effects of HIV/AIDS-related stigma on health-related quality of life. Given the lack of empirical rese arch that have investigated associations between perceived patient-centered culturally sensitive health care a nd the health statuses of patients (Betancourt, 2005), this finding is especially important in unde rstanding how to reduce and eliminate health disparities that negatively impact PLWHA. While social support did not buffer the effects of HIV/AIDS-related stigma on health-related quality of life, the present study did reveal that 116

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higher levels of social support was significantly associated with lower levels of HIV/AIDSrelated stigma. Exploratory Research Question 3 Exploratory research question 3 asked whether there were significant differences in HIV/AIDS-related stigma in association with age, gender, race/ethnicity, sexual orientation, and social class. Partial support for this exploratory research questi on was shown as the analyses to examine this exploratory research question revealed that three of the demographic variables (e.g., gender, race, and sexual orientati on) investigated had significant relationships with HIV/AIDSrelated stigma. However, when these three dem ographic characteristics were entered into a multiple linear regression, only gender and race remained significant. Specifically, it was found that women had higher levels of HIV/AIDS-re lated stigma scores than men and African Americans/Blacks and other races had higher leve ls of HIV/AIDS-related stigma scores than Caucasian Americans/Whites. While it was surprising that HIV/AIDS-related stigma scores did not differ significantly for heterosexuals, bisexual s, and gays/lesbians in the present study, it may be that in comparison to gender and race, se xual orientation is somewhat concealable. For instance, if an individual percei ves a situation as threatening if her or his sexual orientation is revealed, she/he can act in wa ys that disguise her/his sexua l orientation. This concealment reduces the likelihood of being discriminated agains t due to sexual orientation or HIV serostatus. This finding suggests that if a controllable stigma is conceala ble the detrimental impact of HIV/AIDS-related stigma may be attenuated. Limitations and Directions for Future Research Before reviewing the implications of the pres ent study, it is necessary to describe some of its limitations. These limitations existed in the sample, survey, and resear ch design areas of the present study. 117

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Sampling Limitations The present study has sample limitations that co uld impact its generalizability. First, the results of this study cannot be generalized to the experiences of all PLWHA in the US. The findings are limited to a modest sample size of 193 PLWHA who were self-motivated to respond to study advertisements and complete an on-line questionnaire. Nevertheless, the present study had more than adequate power (.80) with the 193 participants as determined by a power analysis calculation. Second, the majority of participants were in medically stable conditions as 78% of participants reported being asymptomatic and 58% reported current highly active antiretroviral therapy (HAART) use. Third, participants were not randomly selected to participate in the present study. Thus, these self-sel ection biases limit the generalizab ility of the present findings to those who are not accessing or utilizing supportive services, as well as other PLWHA with greater immuno-compromise. As such, the present study should be replicated with a larger and randomly selected sample size and with a great er representation of pe rsons with medically unstable health conditions (i.e., symptomatic and AIDS diagnosis.) Survey Limitations While the present study controlled for order effects by randomly ordering the instruments and included five validity items to identify random responding by participants in the Assessment Battery (AB), the length of time required to co mplete the online survey may have impacted participants' responses. As mentioned earlier, it is estimated that it took participants approximately 45 minutes or less to complete all of the instrument s in the AB, based upon feedback from volunteers who took the survey. Ho wever, the number of instruments and the length of completion time may have facilitated a fatigue factor am ong participants. In addition, it was not possible due to financial restrictions in the present stu dy's budget to translate the online survey into languages other than English, such as into Spanish. The option of having Spanish 118

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versions of the online survey may have attracted a more culturally diverse sample of research participants. Research Design Limitations Another major limitation of the present study in cludes the research de sign as it is crosssectional in nature. The crosssectional design does not allow for inferring causal relationships between predictor and criterion variables. For example, the relationship between perceived patient-centered cultural sensitivity in health care experienced and HIV/AIDS-related stigma could be explained by the influen ce of perceived patient-centered cultural sensitivity in health care experienced on stigma. Without longitudinal data it is impossible to determine the temporal ordering of the variables. A future longitudinal ve rsion of the present rese arch that includes an examination of the influence of perceived patient -centered cultural sensitivity in health care experienced on HIV/AIDS-related st igma is greatly warranted. It should also be noted that the present study relied solely on th e use of self-report measures. Although a measure of social desirability (The Marlowe-Crowne Social Desirability Scale-Short Form C) was includ ed among the instruments in the online survey to account for socially desirable responding, the mono-method a pproach to data collection may have been impacted by several confounding variables. For in stance, participants self-reported on their physical health characteristics including HIV/AIDS serostatus (i .e., asymptomatic, symptomatic, or currently having AIDS), the number of years since first being diagnosed with HIV infection, and current HIV treatment regimens. It is quite po ssible that some participants in an effort to minimize their symptoms did not report their physi cal health characteristic s honestly or were not reporting on their current health status as they were basing their answer s on previous health updates. Corroborations of participant's current physical health ch aracteristics with their medical records would have confirmed physical health characteristic data and thus increased confidence 119

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in findings in this study related to these char acteristics. Future studies would benefit from gathering data from multiple sources (e.g., medical records) and employing qualitative research methods in order to decrease mono-method bias. Add itional research is needed to further explain the factors that moderate the relationships between HIV/AIDS-related stigma and psychological distress and HIV/AIDS-related stigma and health -related quality of lif e among PLWHA. Conclusions The present findings provide preliminary support for the existence of a significant positive link between experiences of social discrimination and HIV/AIDS-re lated stigma and a significant negative link between perceived patient-centered cultural sensitivity in health care experienced and HIV/AIDS-related stigma. In addition, the pr esent results offer preliminary evidence that social support moderates the relationship betw een psychological distre ss and HIV/AIDS-related stigma and that perceived patient-centered cultu ral sensitivity in health care experienced moderates the relationship between HIV/AIDS-related stigma and h ealth-related quality of life. However, social support was not found to modera te the relationship between HIV/AIDS-related stigma and health-related quality of life. Significant differences in HIV/AIDS-related stigma scores in association with gender and race but not sexual orientation were also found in the present study. Specifically, women had higher levels of HIV/AIDS-related stigma scores than men and African Americans/Blacks and other ra ces had higher levels of HIV/AIDS-related stigma scores than Caucasian Americans/Whites. However, HIV/AIDS-related stigma scores did not differ significantly for heterosexuals, bisexuals, and gays/lesbians. Implications for Public Health Educators, Health Care Professionals, and Policymakers The findings of the present study have several implications for public health educators, health care professionals, and policymakers. Public health educators could use findings from the present study on HIV/AIDS-related stigma and discrimination in developing new or expanding 120

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upon existing HIV/AIDS educational programs fo r the general public that focus on reducing misconceptions about HIV/AIDS and the persecu tion of PLWHA. Importantly, results of the present study document the conti nued existence of HIV/AIDS-rela ted stigma and discrimination among PLWHA in the US, despite some previous re search suggesting that overt expressions of stigma have declined since the 1990s (Herek, Capitanio, & Widamin, 2002). Based upon findings of the present study, effective interventions for lessening or eliminating HIV/AIDS-related stigma and discri mination at the community level are urgently needed, especially for women and racial and ethnic minority populations. Such interventions could ideally focus on increasing toleran ce and empathy for PLWHA among the general population. This could take the form of positive media messages and programs that communicate the fact that PLWHA are not to blame for cont racting HIV or developi ng AIDS and that these individuals should be accepted within society. Factual inform ation about HIV/AIDS including modes of transmission and methods of risk reducti on should also be incorporated into the content of interventions for lessening or eliminating HIV/AIDS-related stigma and discrimination. Individual and group counseling are modalities that could be used to help PLWHA and their family members and/or friends cope with the devastating effects of HIV/AIDS-related stigma and discrimination. In particular, mental health professi onals (e.g., counseling psychologists) could provide thei r clients who are infected or affected by HIV/AIDS with information about stigma and discrimination and allow for more intimate discussions of stigmatization and discrimination concerns during therapy. Mental health professionals ideally should also provide social suppor t to PLWHA as the findings in the present study suggest that social support may play a signifi cant role in helping to reduce the negative effects of HIV/AIDSrelated stigma on psychological distress. In addition, social s upport groups for PLWHA could be 121

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formed in order to offer a safe environment in which clients could receive social support from other PLWHA for resolving such issues as feeling excluded or s hunned by others. Mental health professionals can also play a major role in the development, implementation, and evaluation of intervention programs aimed at reducing the negative impact of HIV/AIDSrelated stigma and discrimination on PLWHA. For example, counseling psychologists could develop coping skills training workshops for PLWHA that are designed to prepare these individuals for contending with psychologically stre ssful interactions that may arise as a result of stigmatization and discrimination. In addition, counseling psychologists could develop patientempowerment training workshops for PLWHA to f eel empowered and to learn strategies and skills for eliciting perceived pati ent-centered cultural sensitivity in health care experienced from health care professionals, particul arly their health care providers. Given the finding in the presen t study suggesting that percei ved patient-centered cultural sensitivity in health care experienced may help to decrease the deleterious effect of HIV/AIDSrelated stigma on health-related qu ality of life, health care providers (e.g., doctors, nurses) may play a critical role in improving the health-rela ted quality of life of PLWHA. More specifically, health care providers can display behaviors a nd attitudes that enable their patients who are infected and affected by HIV/AIDS to feel accep ted and respected rather than stigmatized and discriminated against. Counseling psychologist s working in health care settings may be particularly helpful in teaching health care providers how to pr ovide PLWHA with unbiased care through modeling of non-stigmatizing behaviors. In addition, employing PLWHA as educators of health care providers may be beneficial to practitioners in regards to issues of care management and communicat ion with PLWHA. 122

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Results from the present study revealed th at social support did not moderate the relationship between HIV/AIDS-related stigma and health-related quality of life. One potential explanation for this finding is that study participan ts were in medically stable conditions (78% of participants were asymptomatic), which ma y have reduced the likelihood of detecting a moderating effect of social s upport on the relationship between HIV/AIDS-related stigma and health-related quality life. It is also feasible that the way in wh ich social support was measured in the present study did not capture the precise m echanisms by which social support may moderate this relationship. For instance, it is possible that receiving social support from specific individuals (e.g., friends, family members, or partners) may differentially moderate the relationship between HIV/AIDS-related stigma and h ealth-related quality of life. This finding is certainly curious and warrants further a ttention in future investigations. Empirical evidence from the present study regard ing the continued negative experience of HIV/AIDS-related stigma and discrimination among highly marginalized groups (i.e., PLWHA who are racial or ethnic minorities and/or wome n) of PLWHA could also be used to help policymakers formulate public health initiati ves to combat HIV/AIDS-related stigma and discrimination. Furthermore, evidence of this t ype could help to mobilize and empower PLWHA to lobby for changes in laws and policies negativel y impacting them and to help raise the general public's awareness regarding the continued need s and experiences of culturally diverse and underserved PLWHA in the US, particularly thos e who are racial and ethnic minorities and/or women. The present study also highlights th e need for further research to examine the role of social support and perceived patient-centered cultural sens itivity in health care experienced in reducing and eliminating health disparities that negativ ely impact PLWHA in the US. More specifically, 123

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124 future research is needed in order to enhance our understanding of how health care professionals' behaviors and attitudes, office staff members' behaviors and at titudes, and the health care physical environment and policies can negatively affect the experiences of PLWHA, and to determine effective strategies for reducing stig matization and discrimination in the health care environment.

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APPENDIX A INFORMED CONSENT Dear Participant, We are conducting an online study on the expe riences of persons living with HIV/AIDS (PLWHA). Our hope with this re search is to contribute to th e understanding of the needs and experiences of PLWHA. Participation in our stud y will involve completing an online survey that will take approximately 45 minutes or less. Your participation is completely voluntary and your identity will not be known to us. In addition, no record will be kept of your web address. You do not have to respond to any questions on the surv ey that you do not wish to answer and your responses are completely anonymous. There are no anticipated risk s to you as a participant in this study. Although some of the questions on the survey are of a personal na ture, all responses are anonymous. No identifying information will ever be linked to any comp leted surveys. There is no compensation for completing this survey. You are free to withdraw your consent to participate and may discontinue your participation in this st udy at any time without any consequences. If you have any questions about th is study, please feel free to cont act Mr. Jacob J. van den Berg by e-mail at jacobv@ufl.edu or by phone at (919) 684-9555 or Dr. Carolyn M. Tucker by e-mail at cmtucker@ufl.edu or by phone at (352) 273-2167. Questions or concerns about your rights as a research participant may be directed to th e UFIRB office, University of Florida, Box 112250, Gainesville, Florida, 32611; phone (352) 392-0433. Please write down or print out all of this contact information for your records. By selecting Next you indicate that you are: (a) at leas t 18 years of age, (b) have been diagnosed with HIV or AIDS, a nd (c) have the ability to read and understand English. You are also agreeing to participate in this study and you understand your righ t to refuse to participate at any time. Sincerely, Jacob J. van den Berg, M.S. Ph.D. Candidate in Counseling Psychology University of Florida Carolyn M. Tucker, Ph.D. Distinguished Alumni Professor Joint Professor of Psychology and Professor of Community Health and Family Medicine Professor of Pediatrics 125

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APPENDIX B DEMOGRAPHIC AND MEDICAL IN FORMATION QUESTIONNAIRE Directions: Please answer each of the following below by typing in the information or clicking on the box that best describes you. 1. What is your age? 2. Please indicate your gender. Woman Man Transgender 3. Which best describes you? (p lease check all that apply): African American/Black Asian American/Pacific Islander American Indian/Native American Hispanic/Latina/o-Black Hispanic/Latina/o-White White/Caucasian American Multiracial: If yes, please specify:___________ Other: If yes, please specify:_______________ 4. Please indicate specifically the racial or ethnic group(s) to which you belong (i.e., Cuban American, Japanese, Carribean, Chin ese American, Dutch, Canadian, Italian American, etc...) ________________________ 5. What is your preferred language to speak, read, and write? (i.e ., English, Spanish, German) 6. What country are you currently residing in? _______________ 7. If you are currently residing in the United St ates, in what geographical region are you located? Northeast Southeast Midwest Northwest Southwest Other (please specify if the a bove does not describe your region well:________________) 8. What is your country of origin? _____________________ 126

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9. Click on the highest level of education that you have completed. Elementary School Middle/Junior High School High School Some College/Technical School College Some Professional/Graduate School Professional/Graduate School 10. Click on the highest degree that you received. High School Diploma GED Associates Degree Bachelors Degree Masters Degree Doctoral Degree Other: (please specify:__________) 11. In which country did you receive th e majority of your education? _____________ 12. Click one of the following that is closest to your current income. $0-$10,000 $11-$20,000 $21-$30,000 $31-$40,000 $41-$50,000 $51-$60,000 $61-$70,000 $71-$80,000 Over $80,000 13. Click one of the following that best desc ribes your current social class: lower class working class middle class upper middle class upper class 14. What is your current employment status (sel ect all that apply)? Employed Full Time Employed Part Time Disability Unemployed Student Other (please specify: ___________) 127

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15. Which one of the following best describes your relationship status at this time? Single Married Committed relationship Divorced Separated Widowed Other (please specify: ___________) 16. Choose the one best descriptor for how much you are physically attracted to members of your own gender low low-moderate moderate moderate-high high 17. Choose the one best descriptor for how much you are physically attracted to members of the other gender low low-moderate moderate moderate-high high 18. Choose the one best descriptor for ho w much you are emotionally attracted to members of your own gender low low-moderate moderate moderate-high high 19. Choose the one best descriptor for ho w much you are emotionally attracted to members of the other gender low low-moderate moderate moderate-high high 128

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20. Which one of the following best describes your sexual orientation? Exclusively heterosexual Mostly heterosexual Bisexual Mostly gay/lesbian Exclusively gay/lesbian 21. Choose the one best descriptor to indicate if you have had sex (oral, anal, or vaginal sex) with persons of your own gender, the other gender, or both genders? Never had sex My own gender only My own gender mostly Both genders equally Other gender mostly Other gender only 22. How connected or involved are you in the lesbian/gay/bisexual/transgender (LGBT) community? Very slightly or not at all A little Moderately Quite a bit Extremely 23. In general, how open or out are you about your sexual orientation to others? Not at all A little bit Somewhat Mostly Completely 24. Choose the one best descriptor for your religious affiliation. Catholic Baptist Presbyterian Methodist Quaker Universal Unitarianism Universal Fellowship of Metr opolitan Community Churches Christian Buddhist Jewish Muslim Bahl Other (please specify: ___________) None 129

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23. In what year did you find out that you were HIV-positive ____or had developed AIDS? ____ (If AIDS have not developed, put .) 24. How do you believe that you contracted HIV? Male-to-male sexual contact High risk heterosexual contact Injection drug use High risk heterosexual contac t and injection drug use Dont Know Other (please specify:________________) 25. Which of the following best describes your cu rrent sexual activity (oral, anal, or vaginal sex)? Not having sex Having sex, but with more than one partner Having sex with just one partner, but for less than 6 months Having sex with just one partner for 6 months or longer Other (please specify if none of the a bove captures your curr ent sexual activity) 26. Have you disclosed your HIV status to anyone? Yes No 27. If yes, with whom have you disclosed your HIV status? (check all that apply) Mother Father Sister(s) Brother(s) Uncle(s) Aunt(s) Grandmother(s) Grandfather(s) Cousin(s) Children Close Friend(s) Other (please specify: ___________) 28. Do you currently us e alcohol or drugs? Yes No 130

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29. Please check off any of the following substances th at you may have used in the past year? Alcohol Marijuana (grass, pot weed) Inhalants (things you sniff or i nhale like whippets, poppers, etc.) Cocaine Crack (rock) Hallucinogens (LSD, acid, mushrooms) Heroin, by snorting or smoking Angel dust (PCP) MDMA (ecstasy, X, E) Downers, Barbituates Tranquilizers Uppers, Amphetamines Pain medications Steroids 30. In the past year have you: a. Injected illegal drugs? Yes No b. Shared needles? Yes No c. Used a needle exchange program? Yes No 31. How many of your friends have been diagnosed as HIV-positive? _____ 32. How many of your friends have been diagnosed with AIDS? ______ 33. Do you have children? Yes No (Skip to Q34) (a) If yes, how many children do you have? _____ (b) Are any of your children HIV positive? Yes No (c) Do any of your children take HIV medications? Yes No 34. Are you currently asymptomatic (wit hout any HIV/AIDS-related symptoms)? Yes No Dont know 35. Are you currently symptomatic? (with any HIV/AIDS-related symptoms?) Yes No Dont know 36. Do you currently have AIDS? Yes No Dont know 37. Do you know your T-Helper (CD4) cell count? Yes No Dont know 131

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38. If yes, in the past year has your T-Helper (CD4) cell count been between 400 and 1400? Yes No Dont know 39. In the past year, has your T-Helper (C D4) cell count been between 200 and 399? Yes No Dont know 40. In the past year, has your T-Helper (CD4) cell count been below 200? Yes No Dont know 41. Do you try to remember and keep up with your Tcell (CD4) count? Yes No Dont know 42. Do you know your viral load? Yes No Dont know 43. If yes, in the past year has your viral load been 100,000 or more? Yes No Dont know 44. In the past year, has you r viral load been anyw here between 25,000 and 99,000? Yes No Dont know 45. In the past year, has your vi ral load been 25,000 or less? Yes No Dont know 46. In the past year, has your vi ral load been less than 50? Yes No Dont know 47. In the past year, have you been told by your health care provider (i.e., doctor) that your viral load is undetectable? Yes No Dont know 48. Do you try to remember and k eep up with your viral load? Yes No Dont know 49. Have you ever used Highly Active Antiretroviral Therapy (HAART)? Yes No Dont know 50. If yes, are you currently using HAART? Yes No Dont know 51. Are you currently taking any ot her HIV/AIDS medications? Yes No Dont know If yes, what medications are you currently taking?_________ 132

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APPENDIX C ACQUIRED IMMUNE DEFICI ENCY SYNDROME (AIDS) STIGMA MEASURE (ASM) Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 1. Many people do not want to hug, kiss, or touch someone with HIV/AIDS. 2. Many people believe that t hose with HIV/AIDS should be isolated from the rest of society. 3. Many people would not want to be friends with someone with HIV/AIDS. 4. Many people would not want to date someone with HIV/AIDS. 5. Many people would end the relationship if they found out their partner has HIV/AIDS. 6. Many people would not want to live with someone with HIV/AIDS. 7. Many people do not want their children around someone with HIV/AIDS. 8. Many people believe that if you work or volunteer in HIV/AIDS services you have HIV/AIDS. 9. Regardless of whether or not you are currently working, please tell us your opinion of the following: Many employers would not want to have an employee who has HIV/AIDS. 10. Regardless of whether or not you are currently working, please tell us your opinion of the following: Many people would not want to work with someone who has HIV/AIDS. 11. Many people now believe that if you get HIV/AIDS, it is because you wanted it. 12. Many people believe that those with HIV/AIDS are promiscuous or drug abusers. 13. Many people believe that having HIV/AIDS is a punishment for being gay. 14. Many people believe that gay people are to blame for the spread of HIV/AIDS 15. Many people believe that t hose with HIV/AIDS are a burden to society. Directions: In this section, we want to know about other peoples attitudes and beliefs about HIV/AIDS, NOT how you feel. Please indicate your level of agreement or disagreement by clicking on the answer you choose for each statement. We will use the term g a y to refer to g a y lesbian, bisexual, and/or trans g ender p ersons. 133

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Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 1. People who have HIV/AIDS should be isolated from the rest of society. 2. People who have HIV/AIDS should only date other HIVpositive people. 3. People who have HIV/AIDS are not sexually desirable. 4. People who have HIV/AIDS are more sexually promiscuous than most people. 5. The promiscuity of gay people is the reason why AIDS exists. 6. AIDS is a punishment from God. 7. Please select the answer choice Strongly Disagree *Note: Added validity item. Directions: The following statements refer to your own beliefs and attitudes. Please indicate how strongly you agr ee or disagree with the follo wing statements by clicking on the answer you choose for each statement. 134

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Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 1. Some friends have grown more distant from me after they learned I have HIV/AIDS. 2. I have encountered embarrassing situations because I have HIV/AIDS. 3. People treat me differently when they find out I have HIV/AIDS. 4. My friends would rather not talk about my HIV status. 5. My family would rather not know about my HIV status. 6. Changes in my appearance have negatively affected my relationships with others. 7. Some people act as though it is my fault that I have HIV/AIDS. 8. I regret having told some people that I have HIV/AIDS. 9. I have had to move away from friends and/or family because I have HIV/AIDS. 10. People have not wanted to have sex with me because I am HIV positive. 11. People have not wanted to date me or get romantically involved because of my HIV status. 12. I have been treated with less respect because I have HIV/AIDS. 13. I sometimes feel useless because of my illness. 14. I do not tell people at work about my HIV status in order to avoid nega tive consequences. 15. I have experienced financial hardship because I have HIV/AIDS. Directions: Please indicate how strongly you agr ee or disagree with the following statements by clicking on the answer you choose for each statement. 135

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Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 1. I am embarrassed to tell ot hers that I have HIV/AIDS. 2. I feel that I am at least partially to blame for having HIV/AIDS. 3. Having HIV/AIDS makes me f eel that I am not as good as others. 4. I sometimes feel ashamed of having HIV/AIDS. 5. I feel that I have let my family down by having HIV/AIDS. 6. I am embarrassed by the way that HIV/AIDS makes me look. 7. I do not feel as capable as ot hers because I have HIV/AIDS. 8. I feel that I am a burden to others because I have HIV/AIDS. Directions: Please indicate how strongly you agr ee or disagree with the following statements by clicking on the answer you choose for each statement. Open Ended Question: On the lines below, please list any additional comments about your experiences of being HIV-positive or having AIDS. 136

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APPENDIX D MENTAL HEALTH INVENTORY (MHI) DURING THE PAST MONTH Extremely happy, could not have been more satisfied or p leased Very happy most of the time Generally satisfied, pleased Sometimes fairly satisfied, sometimes fairly unhappy Generally dissatisfied, unhappy Very dissatisfied, unhappy most of the time 1 2 3 4 5 6 1. How happy, satisfied, or pleased have you been with your personal life? Always Very Often Fairly Often Sometimes Almost Never Never 1 2 3 4 5 6 2. How often did you feel that there were people you were close to? 3. How often has feeling depressed interfered with what you usually do? All of the Time Most of the Time A good bit of the Time Some of the time A little of the Time None of the Time 1 2 3 4 5 6 4. How much of the time did you have difficulty reasoning and solving problems; for example, making plans, making decisions, learning new things? 5. How much of the time have you generally enjoyed the things you do? 6. How much of the time has your daily life been full of things that were interesting to you? Directions: These questions are about how you feel and how things have been with you during the past month For each question, please click on th e circle for the answer that comes closest to the way you have been feeling. 137

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DURING THE PAST MONTH All of the Time Most of the Time A good bit of the Time Some of the time A little of the Time None of the Time 1 2 3 4 5 6 7. How much of the time have you felt loved and wanted? 8. How much of the time have you been a very nervous person? 9. How much of the time did you have difficulty doing activities involving concentration and thinking? 10. How much of the time did you feel depressed? 11. How much of the time have you felt tense or high-strung? 12. How much of the time have you been in firm control of your behavior, thoughts, emotions, feelings? 13. How much of the time did you become confused and start several actions at a time? 14. How much of the time did you feel that you had nothing to look forward to? 15. How much of the time have you felt calm and peaceful? 16. How much of the time have you felt emotionally stable? 17. How much of the time have you felt downhearted and blue? Always Very Often Fairly Often Sometimes Almost Never Never 1 2 3 4 5 6 18. How often have you felt like crying? 138

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DURING THE PAST MONTH All of the Time Most of the Time A good bit of the Time Some of the time A little of the Time None of the Time 1 2 3 4 5 6 19. How much of the time did you feel left out? Always Very Often Fairly Often Sometimes Almost Never Never 1 2 3 4 5 6 20. How often did you feel that others would be better off if you were dead? All of the Time Most of the Time A good bit of the Time Some of the time A little of the Time None of the Time 1 2 3 4 5 6 21. How much of the time did you forget, for example, things that happened recently, where you put things, appointments? 22. How much of the time did you feel that your love relationships, loving and being loved, were full and complete? 139

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DURING THE PAST MONTH Extremely so, to the point where I could not take care of thin g s Very much bothered Bothered quite a bit Bothered some, enough to notice Bothered just a little Not bothered at all 1 2 3 4 5 6 23. How much have you been bothered by nervousness, or your nerves? All of the Time Most of the Time A good bit of the Time Some of the time A little of the Time None of the Time 1 2 3 4 5 6 24. How much of the time has living been a wonderful adventure for you? 25. How much of the time have you felt so down in the dumps that nothing could cheer you up? Yes, constantly Yes, very often Yes, fairly often Yes, a couple of times Yes, once No, never 1 2 3 4 5 6 26. Did you ever think about taking your own life? 140

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DURING THE PAST MONTH All of the Time Most of the Time A good bit of the Time Some of the time A little of the Time None of the Time 1 2 3 4 5 6 27. How much of the time have you felt restless, fidgety, or inpatient? 28. How much of the time have you been moody or brooded about things? Always Very often Fairly often Sometimes Almost never Never 1 2 3 4 5 6 29. How often did you get rattled, upset, or flustered? All of the Time Most of the Time A good bit of the Time Some of the time A little of the Time None of the Time 1 2 3 4 5 6 30. How much of the time did you have trouble did you have trouble keeping you attention on any activity for long? 31. How much of the time have you been anxious or worried? 32. How much of the time have you been a happy person? Always Very often Fairly often Sometimes Almost never Never 1 2 3 4 5 6 33. How often did you find yourself having difficulty trying to calm down? 141

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DURING THE PAST MONTH All of the Time Most of the Time A good bit of the Time Some of the time A little of the Time None of the Time 1 2 3 4 5 6 34. How much of the time have you been in low or very low spirits? 35. How much of the time have you felt cheerful, lighthearted? Extremely depressed Very depressed Quite depressed Somewhat depressed A little depressed Not depressed at all 1 2 3 4 5 6 36. How depressed (at its worst) have you felt? All of the Time Most of the Time A good bit of the Time Some of the time A little of the Time None of the Time 1 2 3 4 5 6 37. How much of the time did you react slowly to things that were said or done? Always Very often Fairly often Sometimes Almost never Never 1 2 3 4 5 6 38. How often did you feel isolated from others? 142

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APPENDIX E MEDICAL OUTCOMES STUDY SOCIAL SUPPORT SURVEY (MOSS-SSS) DURING THE PAST MONTH None of the Time A Little of the Time Some of the Time Most of the Time All of the Time 1 2 3 4 5 1. Someone to help you if you were confined to bed. 2. Someone you can count on to listen to when you need to talk. 3. Someone to give you good advice about a crisis. 4. Someone to take you to the doctor if you needed it. 5. Someone who shows you love and affection. 6. Someone to have a good time with. 7. Someone to give you information to help you understand a situation. 8. Someone to confide in or talk to about yourself or your problems. 9. Someone who hugs you. 10. Someone to get together with for relaxation. 11. Someone to prepare your meals if you were unable to do it yourself. 12. Someone whose advice you really want. 13. Someone to do things with to help you get your mind off things. 14. Someone to help with daily chores if you were sick. 15. Someone to share your most private worries and fears. Directions: Next are some questions about th e support that is available to you 1. About how many close friends do you have? 2. About how many close relatives do you have? Directions: People sometimes look to others for companionship, assistance, or other types of support. How often is each of the following kinds of support available to you if you need it? Please click on the answer you choose for each statement. 143

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DURING THE PAST MONTH None of the Time A Little of the Time Some of the Time Most of the Time All of the Time 1 2 3 4 5 16. Someone to turn to for suggestions about how to deal with a personal problem. 17. Someone to do something enjoyable with. 18. Someone who understands your problems. 19. Someone to love and make you feel wanted. Open Ended Question : On the lines below, please tell us something about the support that is available to you. 144

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APPENDIX F WORLD HEALTH ORGANIZA TION QUALITY OF LIFE-BREF (WHOQOL-BREF) Very Poor Poor Neither poor nor good Good Very good 1 2 3 4 5 1. How would you rate your quality of life? Very dissatisfied Dissatisfied Neither satisfied nor dissatisfied Satisfied Very satisfied 1 2 3 4 5 2. How satisfied are you with your health? THE FOLLOWING QUESTIONS ASK ABOUT HOW MUCH YOU HAVE EXPERIENCED CERTAIN THINGS IN THE LAST TWO WEEKS. Not at all A little A moderate amount Very much An extreme amount 1 2 3 4 5 3. To what extent do you feel that physical pain prevents you from doing what you need to do? 4. How much do you need any medical treatment to function in your daily life? 5. How much do you enjoy life? 6. To what extent do you feel your life to be meaningful? 7. How well are you able to concentrate? 8. How safe do you feel in your daily life? 9. How healthy is your physical environment? Directions: Please read each question, assess your f eelings, and click on the circle for each question that gives the best answer for you. 145

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146 THE FOLLOWING QUESTIONS ASK ABOUT HOW COMPLETELY YOU EXPERIENCE OR WERE ABLE TO DO CERTAIN THINGS IN THE LAST TWO WEEKS. Not at all A little A moderate amount Very much An extreme amount 1 2 3 4 5 10. Do you have enough energy for everyday life? 11. Are you able to accept your bodily appearance? 12. Have you enough money to meet your needs? 13. How available to you is the information that you need in your day-to-day life? 14. To what extent do you have the opportunity for leisure activities? Very Poor Poor Neither poor nor good Good Very good 1 2 3 4 5 15. How well are you able to get around? THE FOLLOWING QUESTIONS ASK YOU TO SAY HOW GOOD OR SATISFIED YOU HAVE FELT ABOUT VARIOUS ASPECTS OF YOUR LIFE OVER THE LAST TWO WEEKS Very dissatisfied Dissatisfied Neither satisfied nor dissatisfied Satisfied Very satisfied 1 2 3 4 5 16. How satisfied are you with your sleep? 17. How satisfied are you with your ability to perform your daily living activities?

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THE FOLLOWING QUESTIONS ASK YOU TO SAY HOW GOOD OR SATISFIED YOU HAVE FELT ABOUT VARIOUS ASPECTS OF YOUR LIFE OVER THE LAST TWO WEEKS. Very dissatisfied Dissatisfied Neither satisfied nor dissatisfied Satisfied Very satisfied 1 2 3 4 5 18. How satisfied are you with your capacity for work? 19. How satisfied are you with yourself? 20. How satisfied are you with your personal relationships? 21. How satisfied are you with your sex life? 22. How satisfied are you with the support you get from your friends? 23. How satisfied are you with the conditions of your living place? 24. How satisfied are you with your access to health services? 25. How satisfied are you with your transport? THE FOLLOWING QUESTION REFERS TO HOW OFTEN YOU HAVE FELT OR EXPERIENCED CERTAIN THINGS IN THE LAST TWO WEEKS : Never Seldom Quite often Very often Always 1 2 3 4 5 26. How often do you have negative feelings such as blue mood, despair, anxiety, depression? 147

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APPENDIX G EXPERIENCES OF SOCIAL DISCRIMINATION (ESD) Never Once in a while Sometimes Many Times 1 2 3 4 1. As you were growing up, how often were you made fun of because of your sexual orientation? 2. As you were growing up, how often were you hit or beaten up because of your sexual orientation? 3. As an adult, how often have you been made fun of because of your sexual orientation? 4. As an adult, how often have you been hit or beaten up because of your sexual orientation? 5. As you were growing up, how often did you hear that gays grow old alone? 6. As you were growing up, how often did you hear that gays are not normal? 7. As you were growing up, how often did you feel that your sexual orientation hurt and embarrassed your family? 8. As an adult, how often have you had to pretend that you are straight to be accepted? 9. How often have you lost a job or career opportunity because of your sexual orientation? 10. How often have you had to move away from friends or family because of your sexual orientation? 11. How often have you been harassed by the police because of your sexual orientation? Directions: In this section, we want to know about your experiences as a child and as an adult. Please indicate how often you experi enced these things by clicking on the circle that best answers the question for you. If any of the questions are not applicable to you, please select never. 148

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Never Once in a while Sometimes Many Times 1 2 3 4 1. As you were growing up, how often were you made fun of because of your race or ethnicity? 2. As you were growing up, how often were you hit or beaten up because of your race or ethnicity? 3. As an adult, how often have you been made fun of because of your race or ethnicity? 4. As an adult, how often have you been hit or beaten up because of your race or ethnicity? 5. How often have you been treated rudely or unfairly because of your race or ethnicity? 6. As an adult, how often have you been harassed by police because of your race or ethnicity? 7. How often have you been turned down for a job because of your race or ethnicity? 8. How often have you been uncomfortable in predominately White spaces because of your race or ethnicity? 9. In sexual relationships, how often do you have difficulty finding sexual partners because of your race or ethnicity? 10. In sexual relationships, how often do you find that your partner pays more attention to your race or ethnicity than to who you are as a person? 11. In sexual relationships, how often have you been turned down for sex because of your race or ethnicity? Directions: In this section, we want to know about your experiences as a child and as an adult. Please indicate how often you experi enced these things by clicking on the circle that best answers the question for you. If any of the questions are not applicable to you, p lease select never. 149

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*Note: Added validity item. Open Ended Question : On the lines below, please tell us something about your experiences related to your sexual orientation, race/e thnicity, or financial circumstances. Never Once in a while Sometimes Many Times 1 2 3 4 1. In the last 12 months, how often did you run out of money for your basic necessities? 2. In the last 12 months, how often have you had to borrow money from a friend or a re lative to get by financially? 3. In the last 12 months, how often have you had sex with someone in exchange for money, food, or housing 4. In the last 12 months, how often have you had to look for work in order to support yourself? 5. Please select the answer choice Never Directions: In this section, we want to know about your experiences currently as an adult. Please indicate how often you experienced these things by clicking on the circle that best answers the question for you. If any of the que stions are not appli cable to you, please select never. 150

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APPENDIX H HUMAN IMMUNODEFICIENCY VIRUS (HIV ) STIGMA SCALE-REVISED (HSS-R) *Note: Added validity item. Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 1. In many areas of my life, no one knows that I have HIV/AIDS. 2. I feel guilty because I have HIV/AIDS. 3. Please select the answer choice Agree. 4. Peoples attitudes about HIV/ AIDS make me feel worse about myself. 5. Telling someone I have HIV/AIDS is risky. 6. Most people with HIV/AIDS lose their jobs when employers learn that they have HIV/AIDS. 7. I work hard to keep my HIV/AIDS a secret. 8. I feel Im not as good as others because I have HIV/AIDS. 9. I never feel ashamed of having HIV/AIDS. 10. People with HIV/AIDS are treated like outcasts. 11. Most people believe a person who has HIV/AIDS is dirty. 12. Having HIV/AIDS make s me feel unclean. 13. Most people think that a person with HIV/AIDS is disgusting. 14. Having HIV/AIDS makes me feel that Im a bad person. 15. Most people with HIV/AIDS are rejected when others learn that they have HIV/AIDS. 16. I am very careful who I tell that I have HIV/AIDS. Directions: Please indicate how strongly you agr ee or disagree with the following statements by clicking on the circle that fits best for you. 151

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Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 17. Some people who know that I have HIV/AIDS have grown more distant. 18. Most people are uncomfortable around someone with HIV/AIDS. 19. I never felt that I have to hide the fact that I have HIV/AIDS. 20. I worry that people may judge me when they learn that I have HIV/AIDS. 21. Having HIV/AIDS is disgusting to me. 22. I am hurt by how people reacted to learning that I have HIV/AIDS. 23. I worry people who know I have HIV/AIDS will tell others. 24. I regret having told so me people that I have HIV/AIDS. 25. People avoid touching me if they know I have HIV/AIDS. 26. People I care about stopped calling me after learning that I have HIV/AIDS. 27. People dont want me around their children once they know I have HIV/AIDS. 28. People have physically backed away from me because I have HIV/AIDS. 29. I have stopped socializing with some people due to their reactions. 30. I have lost friends by te lling them I have HIV/AIDS. 31. I told people close to me to keep my HIV/AIDS a secret. 32. People who know that I have HIV/AIDS ignore my good points. 33. People seem afraid of me because I have HIV/AIDS. 152

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APPENDIX I HIV STIGMA SCALE (HSS) HOW MUCH DO YOU Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 1. Feel blamed by others. 2. Feel that you need to hide it. 3. Feel ashamed. 4. Think HIV is punishment for something. 5. Think other people are uncomfortable around you. 6. Feel people avoid you. 7. Fear you will lose your friends. 8. Fear your family will reject you. 9. Feel that people do not wa nt you around their children. Directions: Here are some ways that people may feel about HIV and AIDS. Thinking about having HIV/AIDS, please click on the circle for each statement that fits best for how you feel. 153

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APPENDIX J MARLOWE-CROWNE SOCIAL DE SIRABILITY SCALE SHORT FORM C (M-CSDS-SFC) *Note: Added validity item. True False 0 1 1. It is sometimes hard for me to go on with my work if I am not encouraged. 2. I sometimes feel resentful when I dont get my way. 3. On a few occasions, I have given up doing something because I thought too little of my ability. 4. There have been times when I felt like rebelling against people in authority even t hough I knew they were right. 5. No matter who Im talking to, Im always a good listener. 6. Please select the answer choice True. 7. There have been occasions when I took advantage of someone. 8. Im always willing to admit it when I make a mistake. 9. I sometimes try to get even rather than forgive and forget. 10. I am always courteous, even to people who are disagreeable. 11. I have never been irked (irritated) when people expressed ideas very di fferent from my own. 12. There have been times when I was quite jealous of the good fortune of others. 13. I am sometimes irritated by people who ask favors of me. 14. I have never deliberately said something that hurt someones feelings. Directions: For each of the following statements, please indicate whether you consider the statement to be true or false by clic king on the response you choose that best fits for you. 154

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APPENDIX K TUCKER-CULTURALLY SENSITIVE HEALTHCARE INVENTORY-PATIENT FORM (TCSHI-PF) Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 THE HEALTH CARE PROVIDER I SEE MOST OFTEN WHEN I VISIT MY HEALTH CARE CENTER OR OFFICE: 1. Is compassionate or shows that he or she cares about how I feel. 2. Is concerned about my well-being. 3. Is honest and direct with me. 4. Is dedicated to her or his work. 5. Enjoys what he or she is doing. 6. Is well educated. 7. Is knowledgeable about medicine. 8. Knows what he or she is doing. 9. Is confident in his or her abilities. 10. Is right about why I am sick. 11. Responds to my requests. 12. Seems interested in my problem. 13. Is concerned about my pr esent situation and future situations. 14. Treats all of his or her patients equally. 15. Examines me the same way he or she examines other patients. 16. Makes helpful and reasonable recommendations. Directions: Take a moment to think about your experi ences with the hea lth care provider you see most often at your health care center or office. This provider might be a doctor, a nurse practitioner, or some other health care provider. Now please rate how strongly you agree or disagree that this provider shows each h ealth care characteristic or behavior listed below. Please use a rating of 1, 2, 3, or 4, wher e 1 = Strongly Disagree, 2 = Disagree, 3 = Agree, and 4 = Strongly Agree by clicking on the answer you choose for each statement. 155

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Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 THE HEALTH CARE PROVIDER I SEE MOST OFTEN WHEN I VISIT MY HEALTH CARE CENTER OR OFFICE: 17. Explains prescribed medi cations and procedures in ways I can understand. 18. Is helpful. 19. Treats me like a pers on, not just a number. 20. Cares more about patients than about making money. 21. Follows a common procedure for treating and examining all of his or her patients. 22. Correctly diagnoses and treats my illness. 23. Shows that he or she is familiar with me and my health. 24. Consults with others to help me. 25. Sends me to another health care provider when he or she cannot treat or communicate with me. 26. Is not scared to touch me. 27. Takes my concerns seriously. 28. Does not question the truth or accuracy of what I am feeling. 29. Does not try to diagnose all my problems as psychological or in my mind. 30. Does not talk down to me. 31. Tries to communicate with me. 32. Tries to educate me. 33. Tries to connect with me. 34. Takes all my concerns seriou sly even if he or she does not consider them to be serious. 35. Does not embarrass me in private or public. 36. Prescribes medicine only when he or she is sure of my illness. 37. Prescribes treatments that work. 156

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Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 THE HEALTH CARE PROVIDER I SEE MOST OFTEN WHEN I VISIT MY HEALTH CARE CENTER OR OFFICE: 38. Prescribes medicine only after examining me. 39. Reviews my record before prescribing medications or treatments. 40. Is available for me. 41. Checks out my problem as soon as I go to see her or him. 42. Is consistent in her or hi s diagnosis and treatment of my illness. 43. Listens to me. 44. Takes his or her time during my visit. 45. Asks me questions about my symptoms. 46. Examines me thoroughly and completely. 47. Knows the limits of his or her skills. 48. Explains the medications and procedures he or she prescribes. 49. Does not make me wait long. 50. Follows up on my visits. 51. Puts on a fresh pair of gloves while I am in the examining room. 52. Talks to me before making decisions about prescriptions and treatments. 53. Keeps up with new research and treatments. 54. Treats me with respect. 55. Puts my mind at ease. 56. Makes me feel that my vis it to this health care center was informative and productive. 57. Is polite and courteous. 157

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Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 THE HEALTH CARE PROVIDER I SEE MOST OFTEN WHEN I VISIT MY HEALTH CARE CENTER OR OFFICE: 58. Is willing to answer all my questions. 59. Is sensitive to my needs. 60. Speaks English well enough for me to understand what he or she is saying. 61. Lets me know about illnesses and diseases common among people of my race/ethnicity. 62. Prepares me for the next steps in treating my illness. 63. Shows that he or she remembers me. 64. Acts professionally. 65. Understands my financial situation. 66. Shows appreciation for me and all of his or her other patients. 67. Shows care and concern for my child/children. 68. Is respectful of my religious beliefs. 69. Knows how to make me feel comfortable. 70. Understands my culture. 71. Has training in working with patients of my race/ethnicity. 72. Talks to me before making decisions about prescriptions and treatments. 158

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Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 THE FRONT OFFICE STA FF MEMBERS AT MY HEALTH CARE CENTER OR OFFICE: 1. Are friendly and pleasant. 2. Are helpful. 3. Are polite. 4. Act professionally. 5. Are welcoming. 6. Are skilled at working with people. 7. Give me a card to remind me of my next appointment. 8. Call me the day before my appointment to confirm it. 9. Get back with me as promised. 10. Appear concerned about my well-being. 11. Treat me with respect. 12. Treat me like a person, not a number. 13. Make fair decisions about who the health care provider is going to see next. 14. Do not discriminate against me. 15. Treat all patients equally. 16. Do not look down on me. 17. Do not view patients of my race/ethnicity as uneducated and unable to read. Directions: Please rate how much you ag ree or disagree that the front office staff members at your health care center or office s how each of the following characteristics and behaviors. Please use a rating of 1, 2, 3, or 4, where 1 = Strongly Disagree, 2 = Disagree, 3 = Agree, and 4 = Strongly Agree by clicking on the answer you choose for each statement. 159

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*Note: Added validity item. Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 THE FRONT OFFICE STA FF MEMBERS AT MY HEALTH CARE CENTER OR OFFICE: 18. Allow me to reschedule a missed appointment within a reasonable period of time. 19. Keep my business conf idential and private. 20. Do not grab children from their parents. 21. Do what the health care provider told them to do for me. 22. Work with my case even if I cannot pay the bills. 23. Pay attention to me. 24. Listen to my complaints. 25. Please select the answer choice Disagree. 26. Know my name. 27. Admit me quickly after my initial registration of signin as a patient. 28. Take care of me as I enter the waiting room. 29. Get the health care provider to see me at the time of my appointment. 30. Work quickly to process my paperwork before and after I see the health care provider. 31. Let me know if there are any changes to my record. 32. Give more effort to seeing patients in this health care center than to answering calls. 33. Allow me to discipline my children inside this health care center [If no children, please do not rate this]. 160

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Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 MY HEALTH CARE CENTER OR OFFICE: 1. Is well-maintained and clean. 2. Is a comfortable, relaxing place. 3. Is professional looking lik e a health care center should be. 4. Has affordable services. 5. Has a program to help low-income patients receive treatments they cannot afford. 6. Has many doctors, nurses, and health care center staff members available to treat patients. 7. Has short waiting times to s ee the health care provider. 8. Has a short wait to get an appointment. 9. Has procedures to make sure I am seen by the health care provider at the time of my appointment. 10. Has a clear policy as to which patients are seen first. 11. Is a calm place. 12. Is open late for patients who work during the day. 13. Has brochures available about common illnesses or diseases among individuals of my race/ethnicity. 14. Has posters and educational materials about illnesses and procedures on the wall. 15. Has brochures about illnesses available in English and Spanish. 16. Has a hotline I can call for illness information. 17. Has receptionist areas wher e I can sign in and talk to the receptionist. Directions: Please rate how much you agree that the following health care center characteristics exist at your health care center or office. Please use a rating of 1, 2, 3, or 4, where 1 = Strongly Disagree, 2 = Disagre e, 3 = Agree, and 4 = Strongly Agree by clickin g on the answer y ou choose for each statement. 161

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Strongly Disagree Disagree Agree Strongly Agree 1 2 3 4 THE FRONT OFFICE STA FF MEMBERS AT MY HEALTH CARE CENTER OR OFFICE: 18. Has large and spacious waiting rooms. 19. Has plenty of safe and convenient parking. 20. Has warm and comfortable examining rooms. 21. Has health care providers of my race/ethnicity on staff. 22. Has official interpreters for patients who do not speak English. 23. Has the same health care providers each time I visit. 24. Makes sure that patients a nd staff are not allowed to gossip. 25. Has a social worker availa ble to speak with patients about disability and insurance problems. Open-Ended Question: On the lines below, please list any additional comments or suggestions regarding the cultural sensitivity of the health care you experience. 162

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APPENDIX L DEBRIEFING FORM Debriefing Information for Research Participants Thank you for participating in our research. The goal of this st udy is to learn more about the experiences and needs of persons living with HIV/AIDS (PLWHA). It is very important that you not describe the purpose or details of this study to others because they may choose to participate in this study, a nd if they know the details of the study before participating, their responses might be biased and thus unusable. Counseling services and information about HIV or AIDS can be accessed online at: http:www.thebody.com/index/hotlines/state.html or http://www.cdc.gov/nchhstp/ or by calling the National AIDS Hotline at 1-800-232-4636. Thank you again for your time and please feel free to encourage other PLWHA to participate in this study. 163

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APPENDIX M RECRUITMENT FLYER RESEARCH STUDY PARTICIPATION Are you 18 years of age or older? Have you been diagnosed with HIV or AIDS? Can you read and understand English? Live in the United States? If you said yes to all of these questions, we would like your assistance. We are conducting an online rese arch study on the needs and experi ences of persons living with HIV/AIDS. This completely anonymous and confid ential survey should take approximately 45 minutes or less to complete. Further details a bout this research project can be found in the consent form at the web address listed below. Th is research has been ap proved through the ethics board at the University of Flor ida. Thank you in advance for your time, and please contact Mr. van den Berg at jacobv@ufl.edu or (919) 684-9555 should you have any further questions. Also, please feel free to pass on the link below to anyo ne else that you feel may be interested in participating in this research study. https://www.surveymonkey.com/s.a spx?sm=uJ0S3F5SYhANvcrGeyR TYg_3d_3d https://www.surveymonkey.com/s.a spx?sm=uJ0S3F5SYhANvcrGeyR TYg_3d_3d https://www.surveymonkey.com/s.a spx?sm=uJ0S3F5SYhANvcrGeyR TYg_3d_3d https://www.surveymonkey.com/s.a spx?sm=uJ0S3F5SYhANvcrGeyR TYg_3d_3d https://www.surveymonkey.com/s.a spx?sm=uJ0S3F5SYhANvcrGeyR TYg_3d_3d https://www.surveymonkey.com/s.a spx?sm=uJ0S3F5SYhANvcrGeyR TYg_3d_3d https://www.surveymonkey.com/s.a spx?sm=uJ0S3F5SYhANvcrGeyR TYg_3d_3d https://www.surveymonkey.com/s.a spx?sm=uJ0S3F5SYhANvcrGeyR TYg_3d_3d https://www.surveymonkey.com/s.a spx?sm=uJ0S3F5SYhANvcrGeyR TYg_3d_3d https://www.surveymonkey.com/s.a spx?sm=uJ0S3F5SYhANvcrGeyR TYg_3d_3d 164

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BIOGRAPHICAL SKETCH Jacob John van den Berg was born in Carmel New York and raised in Mahopac, New York. Jacob graduated summa cum laude with a Bachelor of Arts degree in psychology from Fairleigh Dickinson University in Madison, New Jersey in 1997. After graduating from Fairleigh Dickinson, he spent approximately three years working on two National Institutes of Healthfunded culturally-sensitive, commu nity-based health promotion pr ojects under the direction of Dr. John B. Jemmott III at Princeton Universitys Health Psychology Laboratory in Princeton, New Jersey. The overall purpose of these research projects was to reduce human immunodeficiency virus/acquired immune defici ency syndrome (HIV/AIDS)-risk and promote healthy lifestyles among inner-ci ty African American and Lati no/a adolescents living in New Jersey. In 2002, Jacob received a Masters of Science degree in clinical psychology from Yale University in New Haven, Connecticut. During his time at Yale, he primarily worked with Dr. Kathleen J. Sikkema on a pilot study of a comm unity-level HIV prevention intervention for adults with severe mental illness living in supportive housing programs in New Haven, Connecticut and New York City. He also worked with Dr. Sikk ema on a National Institute of Mental Health-funded study that evaluated the ef ficacy of a secondary prevention intervention for people living with HIV infection in New York City who were also coping with traumatic stress related to sexual abuse. Continuing his work in the field of HIV/AIDS, Jacob spent the summer of 2003 at the Mailman School of Public Health at Columbia University in New York City with Dr. Maureen Miller working on a longitudinal study examining infectious disease transmission risk among African American women living in the Bedford-Stuyvesant neighborhood of Brooklyn, New York. 180

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181 In collaboration with Dr. Bonnie Moradi and Dr. Franz Epting, Jacobs work in the American Psychological Associations accredited Ph.D. program in counseling psychology in the Department of Psychology at the University of Florida in Gainesville, Florida from 2002-2008 included developing a theoretically grounded measure to assess prej udice against lesbian and gay individuals and to understand th e experience of inte rnalized homophobia among lesbian and gay persons. At the University of Florida, he also worked with Dr. Carolyn M. Tucker on a National Institutes of Health-funded community-based, pa tient-centered, culturally sensitive healthcare project with low-income and ethnically diverse primary care patients. The ultimate goal of this research was to reduce the health disparities that currently exis t between majority and minority patients living in the United States. In 2007, J acob completed the American Psychological Association's accredited pre-doctoral psychology internship at Duke University Counseling and Psychological Services in Durham, North Carolina. Jacob's dissertation is the culmination of years of working in the field of HIV/AIDS research, education and prevention and also combines his interests in community and health psychology.