Living Positively: Narratives of Forgiveness and Imagination Among Women with HIV Hamaseh Kianfar

The University of San Francisco USF Scholarship: a digital repository @ Gleeson Library | Geschke Center Doctoral Dissertations Theses, Dissertations, Capstones and Projects 2010 Living positively: narratives of forgiveness and imagination among women with HIV Hamaseh Kianfar Follow this and additional works at: https://repository.usfca.edu/diss Recommended Citation Kianfar, Hamaseh, "Living positively: narratives of forgiveness and imagination among women with HIV" (2010). Doctoral Dissertations. 374. https://repository.usfca.edu/diss/374 This Dissertation is brought to you for free and open access by the Theses, Dissertations, Capstones and Projects at USF Scholarship: a digital repository @ Gleeson Library | Geschke Center. It has been accepted for inclusion in Doctoral Dissertations by an authorized administrator of USF Scholarship: a digital repository @ Gleeson Library | Geschke Center. For more information, please contact [email protected]. The University of San Francisco LIVING POSITIVELY: NARRATIVES OF FORGIVENESS AND IMAGINATION AMONG WOMEN WITH HIV A Dissertation Presented to The Faculty of the School of Education Leadership Studies Department In Partial Fulfillment Of the Requirements for the Degree Doctor of Education by Hamaseh A Kianfar San Francisco May 2010 THE UNIVERSITY OF SAN FRANCISCO Dissertation Abstract Living Positively: Narratives of Forgiveness and Imagination Among Women with HIV Since the inception of HIV/AIDS in the early 1980s, relatively few women were diagnosed with this disease (Corea 1992: 1-18). As a result, in the United States much of the research, models of care, and prevention programs addressed this epidemic as it related to men, making HIV among women a virtually invisible epidemic. The face of HIV/AIDS however has changed. According to a 2008 report published by the Center for Disease Control, women now account for than 25% of all new HIV and AIDS diagnosis in the United States and continue to constitute one of the fastest growing groups being infected with HIV (Center for Disease Control 2008). It has now becomin incumbant to understand HIV/AIDS among women. This research study explores the challenges, successes and lives of selected HIV- positive women. Through the medium of language, these women have shared their stories and illustrated the unique obstacles, prejudices and accomplishments they have faced. Through conversations with these women, they have shared how the process of re- remembering their past through the lens of forgiveness has helped them create an identity of hope and a newly imagined future. The methodology in this research study follows the participatory inquiry using critical hermeneutics (Herda 1999). It includes data that are collected through conversations with ii research partners, transcribing and analyzing those conversations while relating them to the research categories: forgiveness, mimesis and imagination. The findings from this research hopefully provides a contribution towards a understanding the struggles facing HIV-positive women so that models of care and public policies may be more encompassing and educators may have a greater understanding of what the issues and struggles are facing many of these women. A practical significance would relate to using the analysis to design appropriate adult learning programs for these women. iii This dissertation, written under the direction of the candidate’s dissertation committee and approved by the members of the committee, has been presented to and accepted by the Faculty of the School of Education in partial fulfillment of the requirements for the degree of Doctor of Education. The content and research methodologies presented in this work represents the work of the candidate alone. Hamaseh Kianfar 3/31/2010 Candidate Date Dissertation Committee Ellen Herda, PhD 3/31/2010 Chairperson Date Patricia Mitchell, PhD 3/31/2010 Date Angela Banks, PhD 3/31/2010 Date Jennifer Cocohoba, PharmD 3/31/2010 Date iv Acknowledgements My journey along this path did not happen alone. Many individuals helped light my way. I want to first thank and acknowledge Dr. Ellen Herda, my mentor, my dissertation chair and a remarkable friend. From the hills of Lao PDR to the classrooms at the University of San Francisco, her guidance and our conversations together allowed me to see the world in a new way. I also want to thank the members of my dissertation committee, Dr. Patricia Mitchell, Dr. Angela Banks and Dr. Jennifer Cocohoba for their time and for sharing their insight, years of experience and their encouragment along the way. To my parents Nahid and Ali Kianfar and my sister Sahar Kianfar, thank you for your unwavering faith, support and compassion. I dedicate this work to my grandparents Moulana Shahmaghsoud and Mah-Talat Angha. Thank you for your foresight, your wisdom, compassion, and the opportunity to receive my education in the United States. To my University of San Francisco classmates and friends, particulary Mary Grace Almandrez, Beryl Banks, Francisco Gamez, Kimberly Mendonca and Laura Nelson. You each made this process rewarding and enjoyable. And finally, a thank you to all the women in my research study and for all the HIV- positive women whom I have had the fortunate to know. Thank you for trusting me with your story. May your voices and stories continue to give strength to others. v TABLE OF CONTENTS Dissertation Abstract ii Committee Signature Page iv Acknowledgements v Table of Contents vi A Poem x Chapter One: Statement of Issue 1 Introduction 1 Background of the Issue 2 Significance of the Issue 5 Summary 6 Chapter Two: Background of HIV 9 Introduction 9 A Global Look at HIV 9 The Global Future of HIV, A Global Response to HIV 12 History of HIV in the United States 14 HIV in Women 16 Gender Inequalities and HIV 19 Summary 21 Chapter Three: Review of Literature 23 Introduction 23 Understanding the Other 23 Critical Hermeneutics 25 Social and Medical Considerations of HIV in Women 28 African American Women and HIV 30 Social Stigma 32 Summary 36 vi Chapter Four: Research Theory and Protocol 37 Introduction 37 Theoretical Framework 37 Research Category One: Mimesis 38 Research Category Two: Forgiveness 39 Research Category Three: Imagination 40 Research Protocol 44 Data Collection 44 Data Analysis 45 Timeline 46 Entrée to the Research Sites 46 Research Conversation Participants 48 Research Questions 52 Introduction to Pilot Study 53 Conversation Partner 53 Pilot Study Summary Analysis 54 Mimesis 54 Forgiveness 56 Imagination 57 Implications of Pilot Study 58 Personal Journal 60 Background of Researcher 60 Summary 61 Chapter Five: Data Presentation and Analysis 62 Introduction 62 Women’s HIV Program 64 How I Appropriated HIV 66 vii Research Category One: Mimesis 68 How HIV- Positive Women Have Re-understood Their Lives 70 Emplotment: How Do You Wish to Tell Your Story? 71 Broadening the Horizon of Understanding 74 Research Category Two: Forgiveness 76 How Remembering and Forgiveness Have Helped HIV-Positive Women Heal 78 Re-remembering and Blocked Memories 79 Research Category Three: Imagination 83 How Imagining the Possibility of a Future Has Helped HIV-Positive Women 84 Live The Message newly Diagnosed Women Should Hear from Other HIV-Positive 86 Women Ways to Education Young Adults on How to Prevent the Spread of HIV 88 Suggestions for Public Policy and Current HIV Clinics 90 Summary 91 Chapter Six: Findings and Recommendations 93 Introduction 93 Summary of the Research 93 Research Findings 95 1. Re-understanding An Individual’s Story 95 2. Re-remembering and Forgiving 96 3. Imagination and Hope 97 4. Education and Prevention 98 Implications for Practice 99 1. Refiguring Leadership in HIV Programs, Policies and Prevention Programs 100 2. Narratives as a Means of Reducing Stigma 100 3. Social Support and Shared Narratives as a Means of Living Beyond HIV 101 Suggestions for Future Research 102 viii 1. Researching Other Individuals Who Are Living with HIV 102 2. Gender Inequality and HIV 103 3. Narratives from Individuals who’s Lives Have Been Touched by HIV-Positive 103 People Personal Reflections from the Researcher 104 Bibliography 106 Appendices 111 Appendix A: A Global View of HIV Infection 2007 112 Appendix B: Estimated Number of People Living with HIV, 1990-2007 113 Appendix C: Percentage of Adults (15+) Living with HIV Who are Female, 114 1990-2007 Appendix D: Letter of Invitation and Research Questions 115 Appendix E: Letter of Confirmation 117 Appendix F: Thank you and Follow-up Letter 118 Appendix G: Research Conversations Transcripts 119 Appendix H: Research Participants 129 Appendix I: Pilot Study Synthesis and Data Analysis 130 Appendix J: IRB Approval 143 Figures and Photographs Figure 1: Global Look at HIV 10 Figure 2: Percentage of Adult Women with HIV Globally 16 Figure 3: Estimated New AIDS Diagnoses and U.S Female Population, by 30 Race/Ethnicity Figure 4: Research Category Themes 41 Figure 5: Formal Conversation Partners 49 Photograph 1: Women’s HIV Program 64 ix Blood, you are really tripped out. I’m so sorry I was naïve in thinking nothing would happen to you. You were doing your best. I just didn’t have the teamwork to help you. But you still work, you’re just handicapped. You are broken now, but you can be fixed. I can help you. I have the equipment to mend you now. We have the number one doctor, Doctor Eddy. We’re take medication now. Our family and friends support us. This will better us, and make us stronger. Together with our brain, our heart, and our soul we’ll be well again. Blood, look how you’re flowing now. Your color is back. Our T-cells are up and our viral load is down! Oh my God, you’re doing it- WE’RE doing it. Hell, we DID IT! Girl, we are FABULOUS!!! A poem written by “Tay,” conversation partner 2009. x CHAPTER ONE: STATEMENT OF THE ISSUE CREATING AN ENVIRONMENT FOR GROWTH Introduction The global HIV/AIDS epidemic is an unprecedented crisis that requires an unprecedented response.

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