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Women's lived experience with human papillomavirus

University of Florida Institutional Repository
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PAGE 1

WOMENS LIVED EXPERIENCE WITH HUMAN PAPILLOMAVIRUS By SUSAN PADHAM PORTERFIELD 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 2005

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ACKNOWLEDGMENTS This completed work symbolizes a life long dream of getting my PhD. I have always set my sights on accomplishing this difficult task not for the sake of doing it but for the sake of learning and experiencing new and different things. This experience epitomizes these endeavors and I am proud to acknowledge that I have learned so much that I know that learning will continue to be a part of my life. This walk has not been without a great deal of help from my committee members and mentors. My committee members who advised and assisted in this effort were Dr. Sharleen Simpson, Dr. Selen Lauterbach, Dr. Anita Spring, and Dr. Sandy Seymour. Special thanks go to Dr. Simpson and Dr. Lauterbach. Dr. Simpson tried to discourage me from going down the qualitative path but I knew it was the only way to get to the real answer of wanting to know what women really experience when they are diagnosed with HPV. She has guided me in every step of the way to make sure I did not become one of the all but dissertation statistics. Dr. Lauterbach is a true phenomenologist. Little did I know when I asked her to teach me about phenomenology that I would be thinking like one at the end of all this. My family, friends, students, and co-workers deserve applause for tolerating my ramblings about HPV. My daughter, Timberly, especially deserves a badge for listening to my ranting and raving when my committee decided I needed more subjects. My heartfelt thanks go to the women who allowed me into their lives, but only for a moment, ii

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to feel what they feel everyday and I hope I will be able to make the life of others that have HPV just a little better. I am very grateful to everyone for allowing this to happen and thankful to God for being in my life during all events, both good and not so good. iii

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TABLE OF CONTENTS page ACKNOWLEDGMENTS ..................................................................................................ii LIST OF FIGURES ...........................................................................................................vi ABSTRACT ......................................................................................................................vii CHAPTER 1 INTRODUCTION........................................................................................................1 Pathophysiology of HPV.............................................................................................2 Prevalence and Knowledge of HPV............................................................................3 Theoretical Issues........................................................................................................7 Philosophical Roots..............................................................................................7 Historical Roots....................................................................................................8 Hermeneutic Phenomenology............................................................................10 2 REVIEW OF LITERATURE.....................................................................................12 Testing to Diagnose the Presence of HPV.................................................................13 Link to Cancer...........................................................................................................16 Coinfection of HPV and HIV....................................................................................18 Stigma of a Sexually Transmitted Infection..............................................................20 Potential for Vertical Transmission from Mother to Child.......................................21 Future HPV Vaccine..................................................................................................22 Potential Psychosocial Issues....................................................................................23 Summary....................................................................................................................24 3 METHODOLOGY.....................................................................................................26 Research Approach/Design.......................................................................................26 Value of the Method for the Question.......................................................................31 Research Design........................................................................................................32 Setting/Sample....................................................................................................32 Data Collection...................................................................................................33 Data Analysis......................................................................................................34 Phenomenological Writing.................................................................................36 Research Rigor...................................................................................................36 Summary....................................................................................................................38 iv

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4 FINDINGS..................................................................................................................40 Descriptions of Participants.......................................................................................41 Cultural Sensitivity....................................................................................................42 Thematic Groupings..................................................................................................45 Feelings Embedded in the Experience of Having HPV.....................................45 Feelings upon learning of the diagnosis......................................................46 Dirty and contaminated...............................................................................49 Feelings of guilt...........................................................................................51 Feelings as they changed over time.............................................................52 Experiences and Fears Related to Telling Others...............................................54 Fears related to the change in self, future, and meaning.............................56 Fears related to sharing with family, losing face, and respect....................57 Partner acceptance with strings attached.....................................................58 Finding Out and Doing Something About It......................................................59 Transformation and Changed Behavior..............................................................62 Self-transformation......................................................................................62 Greater awareness of consequences of behavior.........................................66 Sharing Experiences with Others.......................................................................69 Summary....................................................................................................................70 5 DISCUSSION.............................................................................................................73 Stigma of Having HPV..............................................................................................74 Self Transformation...................................................................................................75 New Guidelines/policy for Pap Smears.....................................................................75 Implications for Nursing Research and Education....................................................78 Future Research.........................................................................................................80 Summary....................................................................................................................82 APPENDIX A ADVERTISEMENT FLYER AND NEWSPAPER AD............................................83 B DEMOGRAPHIC AND INTERVIEW GUIDE.........................................................85 C INFORMED CONSENT INDIVIDUAL INTERVIEWS..........................................87 REFERENCES.................................................................................................................90 BIOGRAPHICAL SKETCH............................................................................................97 v

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LIST OF FIGURES Figure page 1. Van Manens Method of Phenomenology. ...................................................................27 2. Munhalls Model of Existential Investigation ..............................................................31 vi

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Abstract of Dissertation Presented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy WOMENS LIVED EXPERIENCE WITH HUMAN PAPILLOMAVIRUS By Susan Padham Porterfield August 2005 Chair: Sharleen Simpson Major Department: Nursing The purpose of this study was to provide insight and understanding into womens lived experience after diagnosis with human papillomavirus (HPV). Understanding this experience is important because of the prevalence of HPV and the ambiguous course the infection takes later in life. Estimates indicate that 75% of the sexually active population in the United States have an HPV infection or have been exposed. Current research reports that 90% of cervical cancer tissue has HPV present, and cervical cancer is the second leading cancer for women worldwide. This infection has physical, emotional, and psychological ramifications that in many cases cannot be measured. This study looked at fifteen women 20 to 55 years of age, who had been diagnosed with HPV for more than one year. Hermeneutical phenomenology guided the inquiry. Five thematic groupings were identified: 1) the feelings embedded in the experience of having HPV; 2) the experience and fear of telling others; 3) finding out about the diagnosis and doing something about it; 4) transformation vii

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and behavior change which allow women to cope with the diagnosis; and 5) sharing the experiences with others. Concerns voiced by the women included how to cope with the idea of having a sexually transmitted disease (STD), and how to prevent the possible transmission to a partner or a future husband. Also of concern was the possible transmission to an offspring, and the uncertainty about their ability to bear children. The stigma of having an STD created a paradigm shift in the womens values and altered perceptions of self. Many made comments like, people like me do not get STDs. This study illuminated the transformation these women went through from diagnosis to coping with HPV. This self-transformation involved each woman coming to terms with having HPV and dealing with it in her way. The overall inadequate support received from health care providers was a major finding as well. Women felt they needed more information, education, and compassion from health care providers. The experiences of these women also suggest that health care providers need additional education about effective counseling and treatment strategies for HPV. viii

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CHAPTER 1 INTRODUCTION Human papillomavirus (HPV) has been around for over 2000 years and is more commonly known as genital or anal warts. Human papillomavirus specifically affects the epithelial sites throughout the body and can be symptomatic, with visible lesions or hidden within the cell DNA. There are over 100 different types and subtypes of HPV which were considered benign infections until the 1970s when recombinant deoxyribonucleic acid (DNA) technology made it possible to explore cell DNA and revealed a link to cancer (Hagensee, 1999; Parmer, Basiliere, & Orenbery, 1997; Weber & Leone, 2005; Wiener & Walther, 1995). Human papillomavirus is the cause of genital warts and is one of the most common sexually transmitted diseases (STDs). (The older term STD will be used throughout this paper rather than the newer term, a sexually transmitted infection (STI) since it is recognized by most people.) Herpes simplex virus (HSV) is number one, and HPV is ranked second (Weber & Leone, 2005). In 1966, there were estimated to be 169,000 cases in the U.S. (Boyd, 1998); now estimates indicate that over 20 million Americans are infected with HPV, and the frequency is rising (Weber & Leone, 2005). The American Social Health Association (ASHA) estimates that there are 5.5 million new infections occurring yearly in the United States (ASHA, 2001; CDC, 2002; Weber & Leone, 2005). The true picture of the prevalence of HPV infections is hard to pinpoint 1

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2 because HPV is not a reportable disease, and most infections are asymptomatic. It is necessary to discuss the pathophysiology of HPV to grasp the complexity of this virus. Pathophysiology of HPV Most of the papillomaviruses have a specific cellular expression for squamous epithelial cells. Human papillomavirus (HPV) can lie dormant in the epithelial cells until activated. Human papillomavirus is a small, circular, nonenveloped, double-stranded DNA virus that infects epithelial cells and can cause hyperproliferation of these cells. There are two oncogenes, viral protein products (E6 and E7) and a protein that suppress the expression of the oncogenes, bcl-2/E-2 (Fields, Knipe, & Howley, 1996; Harper, 2004; Korn, 1996; World Cancer Research Fund, 1997). E6 and E7 viral proteins bind to the p53 and Rb proteins that are growth-regulatory proteins, which inhibit cell-cycle progression. Due to the inhibition of the cell-cycle growth, HPV oncogenicity seems to be related to a mutation or inactivation of host p53; thus a mutation occurs rather than binding to HPV E6. Inactivation of p53 also results in suppression of bcl-2 expression, a protein that inhibits programmed cell death (Fields, Knipe, & Howley, 1996; World Cancer Research Fund, 1997). There are at least three variants of HPV infection: episomal or nonreplicating, episonam or replicating, and integrated. Episomal is an indication that the virus may exist as an inactive extrachromosomal particle (episomal), which manifests as a subclinical or DNA-only type infection. This is common, is associated with low viral copy numbers, usually no cytological abnormalities, and 50% of sexually active young women have this present (Harper, 2004). The second type, replicating infection, transcribes viral DNA and viral particles are made. This type of infection is detected either via abnormal Pap smear or visible genital warts and can be from lowor high-risk HPV. This variant results in a

PAGE 11

3 cervical intraepithelial neoplasia (CIN) 1 indication on the Pap smear. The third HPV infection occurs in a minority of cases in which the viral DNA transforms the host cell DNA. The circular HPV episome breaks into a linear strand prior to integration into host DNA. This occurs with high-risk types of HPV DNA that produce the bcl-2/E-2. The E-2 in an uninfected cell controls cell-proliferation-inducing genes E-6 and E-7. E stands for early and the numbers are codes for early proteins that affect HPV gene regulation and cell transformation (Weber & Leone 2005). If E-2 is absent then the cell grows without controls, which in turn can produce a neoplasm or a CIN 2/3 (Harper, 2004; Korn, 1996). HPV-6 and HPV-11 are considered low-risk genotypes and HPV-16, HPV-18, and HPVs 31 and 45 are classified as high-risk. HPV-16 accounts for 50-60% of cervical cancer; HPV-18 is involved in 10-12%; and HPVs 31 and 45 are involved in about 4-5% of cervical cancers (Anhang, Goodman, & Goldie, 2004; Weber & Leone, 2004). There are many variables that factor into the manifestation and prevalence of HPV, which cause conflicting clinical actions. Prevalence and Knowledge of HPV A study (Weber & Leone, 2005) conducted in a gynecologic clinic of 4000 women ages 18 to 40 indicated a high prevalence of HPV but no symptoms or other indications of the disease. Forty percent of the women participants harbored HPV without having any history of high-grade cervical disease. Of the 40%, 27% had low-risk HPV types, 15% had high-risk HPV types, and 13% were uncharacterized. This study indicates that even in an everyday practice setting, HPV is an imposing problem. Additionally, indications are that tracking HPV may be impossible due to the long latency period between exposure and overt infection, which makes it difficult for individuals to know when they have been exposed to the virus (Koutsky, 1997).

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4 The Young Womens Health Study conducted at a Planned Parenthood clinic in southern Arizona from 1996 to 2000 revealed a rate of new HPV infections at 2.9% per month. This study also indicated that highest risk of cervical disease was among the women with persistent HPV infection (Giuliano et al., 2002). The asymptomatic nature of HPV hampers reliable estimates of numbers of individuals infected. Individuals who have HPV may not be aware they have an infection but can transmit the virus about 66% of the time. The sexual contacts of infected individuals continue the cycle since they also may not know they have been infected (CDC 2002; United States Department of Health and Human Services, 1999). Weber and Leone (2005) state that the incidence of genital HPV in the United States looks like a pyramid with visible genital warts at the top with 1% of infected people; subclinical infections detected by colposcopy at 4%; 10% of subclinical infections detected by DNA/RNA probes; and 60% of the population showing evidence only by checking for antibodies for the base. The remaining 25% have no prior or current infection or exposure. Linked to the nebulous nature of HPV is a lack of knowledge about perceived risk and attitudes about HPV. A study (Pitts & Clarke, 2002) conducted in the United Kingdom examined womens knowledge of cervical screening, dysplasia, and HPV. The sample population was female employees at a university in the North West of England. The results indicated the women had a basic understanding about Pap screening and colposcopy but their ability to grasp what HPV was and the related risk factors associated was poor. Multiple studies (Biggers, 2000; Jay & Moscicki, 2000; NIH, 2003; Palefsky, 2002) indicate that individuals with human immunodeficiency virus (HIV) have an

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5 increased risk of getting HPV. Human immunodeficiency virus is at epidemic proportions worldwide. In the United States the greatest increase has been in women 18 to 24 years of age, with the rates going from seven percent in 1985 to 25 percent in 2001. Women who are HIV positive are twice as likely to have HPV as women who are HIV-negative; additionally women who are immune-suppressed are ten times more likely to have HPV. Immunosuppression induced by HIV is associated with multiple coinfections, particularly those that are controlled by the cell-mediated arm of the immune system. Coinfection with HIV and HPV is on the rise and presents a challenge, as the HIV-infected women with HPV are more likely to develop squamous intraepithelial lesion of the cervix, and thus are at greater risk of having cervical cancer. Current research indicates that HPV is spreading without abatement due to the nature of the infection, poor public knowledge about the infection, and the inability to prevent reoccurrences even after a reasonable clearance time has occurred. Technology has improved to the point that over 100 different genotypes of HPV have been identified. While those genotypes with the highest cancer risk are known and persistent, technology is still unable to cure or stop the infection (CDC, 2002; Hagensee, 1999; Parmer, Basiliere, & Orenbery, 1997; Weber & Leone, 2005; Wiener & Walther, 1995). Further qualitative studies about the course of this disease and womens experiences with it are warranted due to the incurable nature of the disease, the unexplored psychosocial aspects of this disease, and the possible risk to women and their babies. Statement of Research Purpose The purpose of this study is to gain a better understanding of what it means to live with a diagnosis of HPV. No literature was found that explored the lived experience of

PAGE 14

6 women diagnosed with HPV, and I think that there may be a variety of causes for this. One reason little is written is because there are problems in pinpointing exactly who contracts the virus, where it is contracted, and how to prevent it. In the past, HPV or genital warts were considered an unsightly bother of vaginal or anal warts. However with discovery of the strong link to cervical cancer, this once benign disease has become deadly. In addition to the cancer scare, there is the emotional aspect of a person being told she has HPV. Human papillomavirus is a sexually transmitted disease, which carries issues of guilt and shame, and there is no way to prevent its spread to a partner other than abstinence. Abstinence is not desirable for young women who expect to marry and have children. For those women who plan to have children, there is the added element of possible transmission of HPV to their child either in-vitro or during the birth process. Another possible reason little has been written about the experience of having HPV is that health care and the roles and status of women vary in different societies and cultures; variation includes the rural-urban continuum and the level of development. The cultural background of the women may indicate diversity in their experiences especially regarding the stigma of STDs (Fortenberry et al., 2002). North Florida has a population that is predominantly Caucasian and African American, both in the rural and urban areas. The behaviors and attitudes related to STDs and HPV may be related to this background. Learning about the evolving themes of womens experiences of living with HPV may provide information that could help other women who find themselves in similar situations to have more enriching quality of life. Counseling a woman who has just been diagnosed with HPV is frustrating due to the lack of straightforward answers about treatment and future ramifications. First, they are told they have an incurable virus that

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7 can appear without warning; may not be detected other than through a Pap smear; can be inconclusive at times; can be spread to their partner without any indication; and can cause cervical cancer in 20-30 years if undetected. Then, when practitioners are asked how to prevent spreading it, they must state that there is no preventable method except to refrain from intercourse, since the use of condoms is not effective in prevention of the spread of HPV (Bocchini, 2005). Additionally, the American College of Obstetricians and Gynecologists (ACOG) recommends that the first Pap be done 3 years after the onset of sexual activity commences or no later than age 21 (Bocchini, 2005). But these standards change, promoting confusion for patient and practitioner. This study has identified a number of themes of meaning from the ways that women have coped with this disease and what they have learned from the process. Theoretical Issues Philosophical Roots Hermeneutical phenomenology was selected as the best approach to explore the lived experiences of women who have been diagnosed with HPV for more than one-year. This framework provided the researcher with a full description of the experience by looking at it through an interpretation of a womans everyday experiences. This methodology allows a description of how things appear, how they speak to the interviewee, the researcher, and anyone trying to understand womens experiences. Van Manen (1990) states that phenomenology gives a deeper understanding of everyday experiences although the person must reflect on the lived experience retrospectively or recollectively. This reflection may help in uncovering meanings, which are both explicit and hidden.

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8 In addition to Van Manens view of phenomenology, Patricia Munhalls approach (Munhall, 2001) to existential investigation of phenomena helped discover the essential themes of meaning whether overt or hidden. Munhalls perspective of phenomenology is not a philosophy, but a process or approach. Although she outlines seven processes in phenomenological research, she states that immersion is the first step and a critical beginning. Historical Roots Phenomenology has its roots in the human sciences with philosophers such as Husserl, Heidegger, Gadamer, and Merleau-Ponty. Husserl looked at phenomenology as a reasoned inquiry into the world of appearances, an attempt to glimpse the phenomenon as an experience or a descriptive approach. He proposed that the researcher process the information in a reductive fashion in which the core essence would be bracketed so it could be studied objectively through explicit descriptions (Husserl, 1987; Wilcke, 2002). Bracketing is an attempt by the researcher to eliminate prior knowledge or bias about a phenomenon. Setting aside prior knowledge or interpretive influences about a phenomenon allows a fresh impression about the phenomenon to be illuminated. This approach suspends assumptions about the phenomenon (LeVasseur, 2003). Merleau-Ponty looked at phenomenology as a study of essences. According to him, the essence is the nature of a thing, which makes something what it is. The phenomenological description is a focus on human lived experience in the world. Husserl referred to essences as the whatness of things instead of the thatness of things. Essences are related to the true meaning of something (Husserl, 1987; Merleau-Ponty, 1962; Munhall, 2001; Van Manen, 1990).

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9 One of Husserls students, Martin Heidegger, introduced hermeneutics into the phenomena study, which moved the lived experience into an interpretive turn rather than purely descriptive. Heidegger believed that pure description only limited the revelation of meaning in the lived experience (Heidegger, 1988; Van Manen, 1990). He felt that individuals live their life by experiencing it. Further, the specific meaning attributed to experiences that we put on life is hidden and requires interpretation to have a better understanding of existence. Heidegger focused on uncovering the hidden phenomena and emphasized the importance of an individuals preconceptions. Therefore, hermeneutic phenomenology seeks to go beyond description in order to uncover the meanings that are not so apparent. Hermeneutics bridges the gap between what can be related to in the world, such as life before the HPV diagnosis, and what is now different in our world, such as how our lives have changed in order to continue on (Heidegger, 1988; Wilcke, 2002). This philosophy allows the researcher to be sensitive to the subtle undertones of language in conversation and to listen to the meaning (Van Manen, 1990). Heideggers student, Hans-Georg Gadamer, stressed the importance of language in the research study. Words and their meanings are important in investigating human experience as this gives a fuller and greater depth of understanding of the experience encountered. Gadamer characterized hermeneutics by exploring the role of language, the way in which questioning occurred in research, the conversations, and how the significance of prejudice, history, and tradition impacted the human understanding (Gadamer, 1999; Van Manen, 1990). Gadamer looks at language as the medium for conversations. He notes that conversation has a spirit of its own and that the language in

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10 which it is conducted bears its own truth within it (Gadamer, 1999, p. 383). A conversation is a process individuals go through to gain understanding, thus the essence of hermeneutics; in other words a theory and practice of interpretation. The goal for hermeneutic phenomenology is to uncover and reveal the meaning of the lived experience through a process of interpretation, rediscovery, and the analysis of linguistic meanings in language (Gadamer, 1999; Van Manen 1990; Wilcke, 2002). Hermeneutic Phenomenology Hermeneutic phenomenology provides the researcher with both a philosophy and method in which to explore phenomena or facts of the lived experience and interpret meanings. Revealing this world is a search for the fullness of living. Van Manen says that hermeneutic phenomenology is an attempt to enrich lived experience by mining its meaning (1990, p.38). He also mentions that language and the ability to express oneself to others is the only way to create a conversational relationship (Van Manen, 1990). Sartre (1965, p. 18) said . . that the goal of literature is to reveal the world and particularly to reveal man [sic] to other men [sic] so that the latter may assume full responsibility before the object which has been thus laid bare. Munhall (2001) relates how important language and conversation are in phenomenology as a social interaction. Conversation in research includes listening, keeping silent, and hearing the unknowing, thus allowing new ideas to take root within our beings. My aim is to search for the fullness of living with HPV, to mine its meaning by seeing a womans experiences through her stories and through her own eyes. Summary Using hermeneutic phenomenology as the philosophical underpinning and strategy for grasping the essences of womens lived experience with HPV has allowed research

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11 into a relatively common human experience, which has not previously been explored. There are numerous quantitative studies which address the link HPV has to cancer, studies that identify the best method to diagnose HPV, and those that focus on the best treatment protocols, but little has been done to explore how HPV affects women holistically, personally, physically, emotionally, and psychologically. As mentioned earlier in relation to therapy management, HPV carries multiple issues significant to all women. Further the new information which may be developed by this study is relevant to health care providers in their approach as they diagnose, treat, and counsel women.

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CHAPTER 2 REVIEW OF LITERATURE According to Laura Koutsky, a member of the HPV Research Group at the University of Washington, 1% of the sexually active population, both male and female, in the United States have genital warts with overt symptoms; 14% of the population has subclinical HPV infection detected by colposcopy, cytology, or DNA/RNA probes; and 60% of this population had prior infection with probable antibodies to genital HPV infection. These percentages suggest that 75% of the sexually active population has HPV infection or has been exposed (CDC, 2002; Koutsky, 1997; Weber & Leone, 2005). These numbers are staggering and give a sense of how difficult it can be to estimate accurately the prevalence of HPV infection. The research from a number of different studies documents the prevalence of HPV and how difficult it is to track, which in turn makes it difficult to contain. One such study (Evander et al., 1995) was a population-based cohort study done in Sweden indicating that over a two-year period the diagnosis of HPV infection fluctuated among young women. Of the 276 young women in the study, 80% experienced remission of their HPV infection. Twenty-one percent of the individuals tested positive initially, and when retested, only 8.3% indicated HPV infection. The study speculates that the high frequency of HPV infection and the lower prevalence of HPV infection in women in their late 20s and after age 30 can be the result of a host immune response against the virus 12

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13 infection. The researchers noted that it was difficult to estimate the numbers of infected individuals due to the way in which the silent infection, symptoms, and overt lesions react in different individuals. Natural History of HPV Many cases (about 80%) of HPV regress without any intervention or indication of infection (Saslow et al., 2002). This is due to bodys immune response in eliminating the virus from the body. Human papillomavirus infection starts with an exposure that takes anywhere from 1 to 8 months to incubate. During this time there may not be any overt indication of infected. After this incubation period lesions may start appearing and rapidly multiply during the next three to six months. The host immune response is activated and usually over another 3 to 6 months the body is able to contain the virus. Most individuals sustain clinical remission but about 5% to 10% of individuals have persistent or recurring disease. These individuals can be persistent carriers of HPV (Weber & Leone, 2005). Additionally, spontaneous resolutions for genital warts and cervical cell dysplasia occur without treatment in many cases because of the bodys immune response but this is also dependent on the grade of cervical cell abnormalities. Sixty percent of the low grade infections resolve without treatments and of these only 1% progresses to cancer. High grade infections resolve spontaneously in 30-40% of patients and progress to cancer in 12% of the cases (Weber & Leone, 2005). Testing to Diagnose the Presence of HPV A Pap smear, which is a microscopic examination of cells scraped from the uterine cervix, aids in the diagnosis of abnormal cells. There are two types of surface cells that line the cervix passage, squamous cells in the vagina and columnar cells on the uterus. The junction of these two cells is called the squamous/columnar junction and is referred

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14 to as the transformation zone as the cells are in constant cell division, making this area more vulnerable to cancer (Gant & Cunningham, 1993). Since its implementation in the 1950s, the cervical cytology screening has helped reduce cervical cancer rates dramatically. There are a number of reporting systems for the Pap test, the Class System I-V, the Cervical Intraepithelial Neoplasia (CIN) System, the Descriptive System, and the Bethesda system. With in this research the term CIN is used as the participants described the abnormal Pap smear results using CIN. Many times a Pap result will have all these descriptors listed to help practitioners. The goal of Pap screening and follow-up procedures is to prevent cervical cancer from going undetected. If the Pap smear shows abnormal changes, it is classified and then recommendations for follow-up are administered. The FDA has approved the use of liquid cytology, which replaces the conventional Pap smear. This test significantly improves specimen quality as well as improving readability for test interpretation. Due to having the specimen collected in a liquid medium, half of the material is used for the Pap test and the remainder can be used, if indicated, to test for HPV (Hawkins, Roberto-Nichols & Stanley-Haney, 1997; HPV in Perspective, 1998; Linnehan, Andrews, & Groce, 1996; Manos et al., 1999; National Cancer Institute, 2001; Smith-McCune, 2002). Annually, 50 million Pap tests are performed and of those, 1.2 million indicate that CIN class 1 exists; CIN 2 and 3 consist of 300,000 cases; and 14,000 cases indicate cervical cancer (Weber & Leone, 2005). Recently, new guidelines have been published by The American Cancer Society (ACS) for early detection of cervical neoplasia and cancer which were accepted by the American College of Obstetricians and Gynecologists, the National Cancer Institute, the American Medical Association, the American Academy of Family Physicians, the

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15 American Medical Womens Association, and the American Nurses Association. The changes to the previous 1987 guidelines included when to start screening, when to discontinue screening, screening women who have had a hysterectomy, and screening intervals and screening test (Saslow et al., 2002). The changes in the guidelines are: 1) cervical cancer screening should begin three years after the start of vaginal intercourse, or no later than 21 years of age; 2) cervical cancer screening may cease in women who are 70 or older with an intact cervix, who have had three consecutive documented normal Pap smears, and no abnormal/positive cytology test within the past 10 years prior to age 70; 3) screening of women who have had a total hysterectomy for benign gynecologic disease is not needed.; 4) screening interval after the initial screen using the conventional Pap smear method will stay at annual intervals, but those that use liquid cytology smears can extend the screening to every two years. Those women who have had three consecutive normal smears at or after the age of 30 may also be screened every two or three years. The use of liquid-based cytology allows extending the interval to two or three years unless the women have a history of in utero diethylstilbestrol (DES), a female sex hormone, exposure, are HIV positive, or immunocompromised (Saslow et al., 2002). The rationale for not doing an initial Pap until three years after the start of vaginal intercourse stems from the overdiagnosis of cervical lesion and the time it takes a high-risk HPV to become carcinoma in situ or cancer. In a majority of the HPV cases the lesions will spontaneously regress; therefore current interventions such as colposcopies and loop electrosurgical excision procedure (LEEP) may ultimately do more harm than good (Saslow et al., 2002).

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16 Link to Cancer Cervical cancer is the second most common cancer among women worldwide (Weber & Leone, 2005). The main causal factor linked with cervical cancer is infectious agents that are sexually transmitted such as HPV infection. HPV type 16 and 18 DNA is found in 60-70% of high-grade precancerous lesions of the cervix. According to the findings of the World Cancer Research Fund, known risk factors for cervical cancer that are mediated by HPV include age at first intercourse, number of sexual partners, and number of partners sexual partners (World Cancer Research Fund, 1997). The discrepancy between the 60-70% link, as mentioned above, and the 90% link between cervical cancer specimens and the DNA in HPV is due to the other genotypes making up the difference in percentage (Hagensee, 1999; Parmer, Basiliere, & Orenbery, 1997; Stoler, 2005; Weber & Leone, 2005). With the current dynamic technology of DNA testing with polymerase chain reaction (PCR) techniques, the prevalence figures are on a steady rise (Hildesheim et al., 1994; Weber & Leone, 2005). Sanders and Taira (2003) indicated that in the United States alone approximately 13,000 new cases of cervical cancer will be diagnosed and of these more than 4000 will die of the disease. Risk factors for cervical cancer and the expression and acquisition HPV are many. Factors that open the door for acquisition of HPV include the number of sexual partners and frequency of intercourse, exposures to the HPV viruses by a sexual partner, and infection with other STDs. The expression of HPV depends upon the immune defense state of the individual, which may be influenced by having an inflammation of chlamydia or HSV-2, having diabetes, and being a smoker (CDC, 2002; Diamond, Soddenm, & Goldberg, 1997; Weber & Leone, 2005).

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17 Anal and cervical cancers are similar in their association with HPV. Palefsky (2002) feels that the increase in anal cancer cases has the same estimated incidences that cervical cancer had prior to the aggressive cervical cytology screening. He is also concerned that the HIV infected population in both males and females has shown an increase in anal cancer cases. As a general rule, it seems that an individual who is HIV positive has an increased risk of having HPV and anal cancer. Although this case-controlled study was done in 1993 (Hildesheim et al., 1994), the information is still pertinent today. The study investigated the persistence of type-specific human papillomavirus infection among cytologically normal women; the researchers found that HPV infection is usually transient, and cervical cancer may arise from within the subset of women with persistent HPV infection. Three hundred ninety three women initially cytologically normal were tested for HPV using polymerase chain reaction-based HPV testing. Over a 14-month period, the researchers found that HPV infection was a transient phenomenon among young women <30 years old, and were not sure why this happens. According to Weber and Leone (2005), the overt evidence of HPV may disappear or go undetected over a period of months. Then, depending on the HPV genotype, the virus seems to present itself and grow for several months, at which time the host of the virus mounts an immune response and the virus is contained or in remission. In women greater than 30 years of age, the researchers found HPV persistence was higher and more prominent. This phenomenon may be due to the immune response of the older women, which may be less effective in suppressing the virus. Another possibility is that the women in their study, who were HPV-positive at enrollment, represent a skewed subset of women who were originally infected with HPV at a young age. In addition,

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18 women who were infected with HPV types that are linked with cervical cancer were more likely to have persistent infection than those infected with other HPV types (Hildesheim et al., 1994; Weber & Leone, 2005). Coinfection of HPV and HIV The numbers of people living with human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) continue to increase worldwide, particularly in several regions of the world such as Sub-Saharan Africa (SSA) and Southern Africa registering the highest prevalence; and Asia, the Pacific, Eastern Europe, and Central Asia expanding epidemics yearly (UNAIDS/WHO 2003). Globally (CDC, 2002) it is estimated that 40 million people are living with HIV/AIDS in 2003 compared to 35 million in 2000. The daily HIV infection rate, globally, is 16,000 individual with 10,000 of these newly infected people being in Africa. In the United States, the number of newly infected adult and adolescent women has more than tripled, from 7% in 1985 to 25% in 1999. New female HIV infections are estimated at 12,000 (in 2002), with 64% being African American, 18% White and 18% Latino (Kaiser, 2003). The CDC estimates that in the United States, 850,000 to 950,000 individuals are living with HIV, and another 360,000 living with AIDS. Twenty-one percent of the individuals living with AIDS are women (Kaiser, 2003). A study (Doctors Guide, 1999) funded by the National Institutes of Health, examining HIV infection and its complications in a large, diverse population of women, reported that a higher HIV viral load and lower CD4 count were predictive of HPV infection. The study involved 1,178 HIV-positive women and 500 high-risk HIV-negative women. Women under 30 years of age were 1.75 times more likely to be infected with HPV than women 40 and older. This study supports the view that increased

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19 HPV disease among HIV-positive women results from reactivation of previously acquired HPV rather than being initially infected with HPV recently. This reinforces the importance of the main problem of detecting and treating HPV, the transient and latency characteristic of the virus. Another study (Palefsky, Holly, Ralston, DaCosta, & Greenblatt, 2001) looking at the co-infection of HPV and HIV, reported that 76 percent of HIV-positive and 42 percent of high-risk HIV-negative women had anal HPV DNA. The aim of this study was to outline a detailed analysis of anal HPV infection in HIV-positive and high-risk HIV-negative women, and to characterize risk factors for HPV infections. According to the World Bank (1995) changing the course of a disease may be the only way either HIV or HPV cases will be reduced. The rates of HPV-related morbidity are severely increased in HIV-infected women thus multiplying the personal and economic cost. Even the economic foundations of many countries are being threatened by the HIV/AIDS epidemic. In 1982, there was only one country in Africa that had an HIV prevalence rate over 2 % of the population with HIV/AIDs, Uganda. Now there are 21 African countries that have greater than 7% prevalence rate. The HIV/AIDS epidemic is not only the most important public health problem but it has devastating economic ramifications for many countries (World Bank, 1999). The HIV/AIDs epidemic is being researched by many, as the pandemic ramifications are almost too overwhelming to understand. As with the HIV/AIDs epidemic, the HPV epidemic is just as puzzling to resolve. The stigma of having HIV/AIDs, a sexually transmitted disease, seems to be looked down upon universally. The following section will look at the stigma of having an STD.

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20 Stigma of a Sexually Transmitted Infection The concept of shame carries feelings of guilt, punishment, self-reflection, and retribution for some unspoken event that aids in devaluing an individuals self-worth and self-esteem. Combining these feelings with having a life threatening, STD is overwhelming. There have been a number of studies that look at HPV and HIV and the relationship with stigma and shame. In particular, a study about gonorrhea and HIV screening was conducted in seven U.S. states in 1998, as part of a Gonorrhea Community Action Project (Fortenberry et al., 2002). The results indicated that STD related stigma was associated with a decrease in seeking gonorrhea or HIV testing, thus creating a barrier in containing further exposure. According to Fortenberry et al. (2002), the Institute of Medicine (IOM) reported that stigma is a key element in the hidden epidemics of STDs in the U.S. They defined stigma as an attribute or label that sets a person apart from others and links them to undesirable characteristics. Shame is defined as a negative emotion elicited when a person experiences failure in personal or social standards, feels responsible for the failure, and believes that the failure reflects self-inadequacy rather than inappropriate behavior (Fortenberry et al., 2002). Farmer and Kleinman (1998) looked at the cross-cultural comparison of the human suffering aspect of AIDS. Cultural values color everything we do in life; including what role shame plays in living with an STD. The stigma of HIV/AIDS in Africa has affected entire families within the community. South Africans fear the public knowledge of their own family members HIV status, which will result in a loss of social standing and shame (Giarelli & Jacobs, 2003). This fear and shame prevents them from seeking help as they deny symptoms that could, if addressed early enough, help prevent the spread of the infection as well as

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21 promote quality life for individuals and families. As illustrated earlier, this is true in the United States as well (Fortenberry et al., 2002). Potential for Vertical Transmission from Mother to Child Vertical transmission of HPV, from infected mothers to their newborn babies has conflicting and disturbing possibilities. At the University of Kuopio, Finland, a systematic study of children 0.3 to 11.6 years old born to mothers infected with genital HPV were prospectively followed since 1981. The primary aim of the study was to find a link between children and their mothers antenatally or perinatally. The results indicated that mothers may transmit HPV to their children. Human papillomavirus was found in 31 of the 98 oral scrapings of the children born to mothers with a history of HPV or active infection. Sixteen (51.6%) of these 31 children had the identical HPV type as their mothers. The study mentions possible modes of transmission to include autoinoculation, perinatal infection, infection in utero, casual social contact, and sexual abuse (Puranen, Yliskoski, Saarikoski, Syrjanen, K., & Syrjanen, S., 1996). In another study aimed at evaluating the risk of perinatal HPV transmission from mothers with latent infections to the oropharyngeal mucosa of their infants, two key elements during the delivery were critical factors in the transmission: rupture of the amnion and delivery. The latent HPV infections had a low incidence of transmitting the virus to the oropharyngeal mucosa of the infants. Human papillomavirus was detected in 11 neonates born vaginally to HPV-positive mothers, for a 31% vertical transmission. All of these 11 neonates tested negative for nasopharyngeal HPV (Tenti et al., 1999). Due to the small numbers of previous studies on perinatal transmission the Medical College in Taipei, Taiwan, conducted a study of 301 pregnant women, 160 vaginal deliveries and 141 cesarean deliveries. They did a buccal and genital swab of the

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22 neonates born to HPV-mothers. There were 68 of the 301 neonates who were positive for HPV and of these, 27 mothers transmitted HPV to their children. Eighteen (51%) of the 35 of mothers who had vaginal births transmitted HPV to their children while only nine (27%) of 33 mothers who had cesarean sections transmitted HPV to their children. The researchers concluded that neonates were at higher risk for exposure of HPV after a vaginal delivery than cesarean delivery (Tseng, Liang, Soong, & Pao, 1989). Future HPV Vaccine The best approach to combat cervical cancer and maybe the only way to curb the epidemic is the development of a vaccine to prevent and cure genital HPV. There are several institutions, including Merck Research Laboratories, MedImmune Inc., GlaxoSmithKline, and the National Cancer Institute (NCI) that are developing and testing prophylactic HPV vaccines (Sanders & Taira, 2003). There are 2 vaccines in clinical trial, quadrivalent vaccines by Merck Laboratories, for HPV-16 and HPV-18 mainly associated with certain types of cancer as well as HPV-6 and HPV-11 mainly associated with anogenital warts; and the bivalent vaccine by GlaxoSmithKline. Phase III trials are being conducted and the results are very promising. The Merck randomized double blind trial indicated that a human papillomavirus (HPV-16) vaccine had 100% efficacy in protecting women not previously exposed. This study enrolled 2,392 women aged 16 to 23 years of age (Barclay, 2002; Koutsky, 2002; Bocchini, 2005). GlaxoSmithKline (Bocchini, 2005) bivalent vaccine for HPV 16/18 in women has completed Phase II clinical trails resulting in an 82% efficacy rate in reducing the number of incidents of type 16 and 18 HPV infections. Additionally it prevented cervical changes in approximately 91-95% of women with atypical squamous cells of undetermined significance (ASCUS).

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23 When the vaccine is approved by the FDA there are many unanswered questions that need to be addressed such as: when to start the vaccine; in what population, should it be used just for women or for men too; and what will be the long term efficacy? To prevent being infected with HPV, an individual must be vaccinated well before potential exposure, which means it is indicated around 9 and 10 years of age. This raises many sensitive issues. Thus, there are many factors that need to be addressed after the approval but this vaccine may very well be the only way to slow down the HPV epidemic. Potential Psychosocial Issues In a study conducted in Manchester, England, significant concern by the participants about attitudes toward HPV testing was illuminated. A total of 71 women ranging from age 20-59, were involved in eight focus groups discussing basic information about cervical cancer and screening. Core questions explored attitudes toward HPV; reactions to HPV as sexually transmitted disease linked to cervical cancer; reactions to testing positive for HPV; and partner, family, and community attitudes to HPV testing. The research results indicated anxiety, confusion, and stigma about HPV as a sexually transmitted infection. People thought that more information about HPV was needed for individual and public education. In addition, the researchers were concerned that HPV testing results had the potential to cause psychosocial harm to women, their partners and their families (McCaffery et al., 2002) Linnehan and Groce (2000) conducted a quantitative study on counseling and educational interventions for women with HPV. The research indicated that a diagnosis of HPV had physical issues as well as psychosocial sequelae. Of the 454 participants, a high percentage reported psychosocial sequelae such as anger, depression, isolation, shame, and or guilt. The females of the study reported significantly more feelings of

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24 depression and shame. Shame is an internal meter that affects the individuals entire outlook, values, and actions (Hahn, 2000; Meerabeau, 1999; Sullivan & Lacy, 2001). The concept of shame is mentioned in anecdotal information from women encountered in my clinical practice. One woman stated that she felt dirty and ashamed; so much so she was unable to confide in her mother for guidance. Summary In summary, HPV infection is becoming a major threat to the future health of sexually active individuals (Parmer, Basiliere, & Orenbery, 1997; Stoler, 2005; Wiener, Walther, 1995; World Cancer Research Fund, 1997). Factors hindering efforts to control the HPV epidemic include the fact that it is not a reportable STD, the latency period prior to becoming symptomatic, the lack of knowledge of transmission, and the inability to trace the infection source (Boyd, 1998; Hagensee, 1999; Koutsky, 2002; Montero, Larkin, & Houston, 1997; United States Department of Health and Human Services, 1999). In addition to the factors already cited, the issue of possible vertical transmission of HPV from mother to child is frightening since the research findings are unclear about when this occurs. A positive development is that new technology has allowed early detection of the virus that causes cervical cancer. An HPV vaccine is also in development and has great promise but it does not address the problems of people who already are living with HPV. Although HIV plays a major role in HPV research and is extremely important, it will not be a part of this research. The stigma of having a sexually transmitted disease within a specific society and culture could affect a womans ability and inclination to pursue treatment or disclosure of having HPV. Continued aggressive monitoring and treatment is necessary to help stop this epidemic disease as well as, address potential emotional battles with living with the diagnosis of HPV. This study

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25 hopes to identify themes of meaning from the ways that women have coped with this disease and what they have learned from the process.

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CHAPTER 3 METHODOLOGY Research Approach/Design Using the hermeneutic phenomenological approach to the study of HPV involves gaining access to womens experience in their world. The philosophical framework underlying this method is an understanding of themes of phenomenology. Merleau-Ponty states that phenomenology is accessible only through its method (Merleau-Ponty, 1962; Munhall, 2001 p. 94). Van Manens human science approach sees phenomenological studies as lived structures of meaning. His model of phenomenology uses eleven elements that are intended to increase ones thoughtfulness and ability to capture the lived experience in a persons text of life. An overview of Van Manens approach is outlined in Figure 1. Steps 1 to 3 are a way to orient to the phenomenon of living with HPV and expose any pre-conceived notions about the disease. The first step is to orient to the phenomena. The second step is formulating the phenomenological question, and the third step is to explicate assumptions and preunderstandings of any personal bias and avoid drawing conclusions that do not reflect the womans own experiences. The next phase includes the fourth step that explores the phenomenon using personal experiences, obtaining experiential descriptions as viewed by the study participants, and seeing where this description fits in literature, the arts, or in life. This step facilitates grasping a deeper understanding of the nature of the phenomena. The purpose of this phenomenological reflection is to uncover themes from the womans experience and process them into essential themes of the research. Part of Van Manens 26

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27 method is to do the phenomenological writing, which includes many rewritings and reflections. This conceptualization is credited to Sarah Lauterbach who used writing the TURNING TO THE NATURE OF LIVED EXPERIENCES 1 Orienting to the phenomenon 2. Formulating the phenomenological question 3. Explicating assumptions and preunderstandings THE EXISTENTIAL INVESTIGATION 4. Exploring the phenomenon: generating data 4.1 Using personal experience 4.2 Tracing etymological sources 4.3 Searching idiomatic phrases 4.4 Obtaining experiential descriptions from subjects 4.5 Locating experiential descriptions in literature, arts 5. Consulting phenomenological literature PHENOMENOLOGICAL REFLECTIONS 6. Conducting thematic analysis 6.1 Uncovering thematic aspects 6.2 Isolating thematic statements 6.3 Composing linguistic transformation 6.4 Gleaning thematic description from artistic 7. Determining essential themes PHENOMENOLOGICAL WRITING 8. Attending to the speaking in language 9. Varying the examples 10. Writing 11. Rewriting Source: Adapted from Practicing Phenomenological Writing by M. Van Manen, 1984, Phenomenology and Pedagogy, 2, 5 (as cited in Munhall, 2001, p. 115). Figure 1. Van Manens Method of Phenomenology. phenomenological narrative; Van Manens phenomenology in her research (Boyd, 2001). This model is textual reflection of the lived experience and practical actions of everyday life with the intent to increase ones thoughtfulness and practical resourcefulness or tact (Boyd, 2001 p.114). Carolyn Boyds phenomenological methodology complements Van

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28 Manens model, and I feel that a melding of the two philosophies/methods will lend itself nicely to my research. Patricia Munhall sees phenomenological research as existential investigation. In a broad definition existential investigation encompasses philosophical, religious, and political ideologies. Existentialists believe the choices that individuals make are based on their experiences, beliefs, and biases thus making them unique as individuals. The existentialist is searching for self and defines herself by living (Olson, 1962). The existentialist view of Munhall blends nicely with Van Manens approach and was used as a concurrent process in this research. Munhall (2001) sees phenomenological studies as a means to expand consciousness to result in a better understanding of where meanings lie. The seven essential elements for conducting phenomenology according to Munhall are: immersion; coming to the phenomenological aim of inquiry; existential inquiry, expressions, and processing; phenomenological contextual; and writing a narrative on the meaning of your study (Munhall, 2001, p 130). Immersion into the language and philosophical underpinnings of phenomenology is the critical beginning in a phenomenological inquiry. It is imperative to go beyond just knowing the meaning of phenomenology and to develop a phenomenological perspective as an approach to answering questions (Munhall, 2001). The second step in coming to the phenomenological aim of inquiry is to decenter the researcher by way of reflecting on her/his own beliefs, preconceptions, intuitions, motives, and biases and put on a face of unknowing when determining your experience that is part of your study. The researcher needs to come to the phenomenological question free from assumptions, preconceptions, and forethought about the phenomenon experience (Munhall, 2001).

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29 The third and fourth steps are done concurrently. The third step is to listen to self and others to become heightened to what is being said by the participants. We need to be hearing the situated context of their being-in-the-world. The thoughts, feeling, emotions, and questions are deeply embedded in the context of the participants life, or life-world (Munhall, 2001, p. 148). The fourth step is contextual processing or a search for expression of meaning within the interviews with the participants. The next step is to dwell on the expression of meaning that you hear from an interview. This contemplation time is not measurable in time increments, but it takes as long as is necessary to use the language of the participants to illustrate the particular meaning that is portrayed. A mulling over, dwelling, revisiting what the participant said are all intertwined in the previous steps to really get to the expressed meaning (Munhall, 2001). Powers & Knapp (1990) use the words reflective thoughtfulness to seek and describe the smallest trivial aspect of the experience to see the essence of it. The last two steps are to write the phenomenological narrative and a narrative of meaning of the study. Writing in phenomenological narrative gives voice to the actual language as it simultaneously interprets meaning from expressions used to describe the experience (Munhall, 2001, p.132). It is important to pick a writing style that communicates an understanding of the meaning of the phenomena by including all of the meanings, general and particular. Once this is done then summarizing and answering the phenomenological question is accomplished (Munhall, 2001). As mentioned by both Van Manen and Munhall, once the orientation of the phenomenon and the question is formulated, the concurrent process is to start the existential investigation through in depth conversations where women describe thoughts,

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30 feeling, and concerns about their lived experience. In hermeneutic phenomenology the interview serves to explore and gather experiential narrative material as a means of developing a richer and deeper understanding of the experience. It also is a vehicle to enhance and develop a conversational relationship with each woman. Conversation between two individuals creates interactive dialogue that provides stories and pictures that the individual is willing to share (Munhall, 2001). Audio taping the interviews will facilitate this endeavor. Figure 2 is an outline of Munhalls Model of Existential Investigation. The next ongoing process is to perform a linguistic transformation of the spoken word into writing and interpretation, portraying an accurate description of the meaning discovered. Munhall emphasizes the importance of the researcher not structuring the persons story or having preconceived notions of what the womens experiences mean (Munhall, 2001). Quoting directly from the participants, using their own words from the interviews will help clarify the points of interest and lend feeling about a specific experience (Van Manen, 1990; Wilcke, 2002). Once themes have emerged and descriptions of experiences have developed, another reading and re-reading of the transcriptions will occur to ensure that all the themes have been identified. Subsequent readers, who are well versed in qualitative research, will also be asked to read the transcript to validate interpretive descriptions. Readings and re-reading are all a part of the hermeneutic circle of understanding or interpretation. This process allows themes to evolve and formulation of an understanding of the feelings that have been generated by the lived experience (Patton, 2002; Wilcke, 2002). Time and variation in life events of the researcher as well as a deeper understanding could continue the reflective process.

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31 __________________________________________________________________ The Phenomenon -Existential Investigation --Personal experience The Self --Reflection recorded in personal journal --Obtaining experiential description: The Experiencer ---interviews ---conversations ---clinical material ---observation --Description of others experiences with the phenomenon: the Others ---interviews ---conversations ---observations --Locating experiential descriptions in literature: ---theories ---films ---diaries ---biographies ---art --Anecdotal description: ---serendipitous travels ---eavesdropping ---conferences ---responses Source: Munhall, P. (2000). Nursing research: A qualitative perspective (2nd ed.).Sudbury, MA: Jones and Bartlett Publishers, p. 143. Figure 2. Munhalls Model of Existential Investigation Re-reading the interviews allows the researcher to ensure that the data obtained really answered the question that was asked and reflected the experience. It is important to remember to focus not only on the sum of the parts as seen in the interview but also to examine how they contribute to the whole of the phenomenological aspect of being HPV positive for a life time (Van Manen, 1990). Value of the Method for the Question The purpose of using phenomenological reflections is to grasp the meaning of living with and being-a-woman with HPV. Using the hermeneutic circles of

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32 reinterpreting and grasping a better understanding of the lived experience allows the researcher to have the womens lived experience revealed from the whole to parts to whole again, gaining a deeper understanding and feeling (Wilcke, 2002). Research Design Setting/Sample The setting was in the North Florida area, although one woman who lived in Georgia participated. Of the sixteen participants, there were eleven Southern Whites, two African Americans, one Jamaican, one Hispanic, and one Native American. This reflects the predominate ethnicities in the North Florida area. Women were recruited via word of mouth. Advertisements were placed in the Tallahassee Democrat newspaper health section and on the Advanced Practice Nursing Council website. Flyers were placed in high traffic areas on the Florida State University, Florida Agricultural and Mechanical University, Tallahassee Community College campuses and the Leon County Health Department offices. See Appendix A for the flyer and newspaper notices. The inclusion criteria were 18 years of age or older, been diagnosed with HPV and had lived with the virus for more than one year, and had English fluency. A convenient sample of sixteen women ranged from 20 to 55 years of age. Initially, ten women were interviewed, with initial saturation for this subgroup occurring after the seventh interview. As thematic groupings began to come together each subsequent interview confirmed the groupings rather than introducing new themes. According to Strauss and Corbin (1998), sampling is complete when the categories are saturated. Creswell (1998) speaks of saturation as follows: The researcher typically conducts 20-30 interviews based on several visits to the field to collect interview data to saturate (or find information that continues to add until no more can be found) the categories. A

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33 category represents a unit of information composed of events, happenings, and instances (p.56). The verbatim transcriptions were reviewed by two nursing scholars who thought that more subjects were needed to add depth to the study. The researchers growing expertise in interviewing techniques also allowed more spontaneous sharing of information by the participants. Van Manens words rang true and clear, the phenomenological method consists of the ability, or rather the art of being sensitivesensitive to the subtle undertones of language, to the way language speaks when it allow the things themselves to speak. This means that an authentic speaker must be a true listener (Van Manen, 1990, p.111). Six additional interviews added depth and greater insight to the study. Data Collection Interviews in hermeneutic phenomenology serve as a way to explore and gather experiences that can lead to developing a richer and deeper understanding about a specific human phenomenon (Van Manen, 1990). In this study, all but two of the women, participated in one 2 hour audiotaped interview conducted in the primary researchers office. The other two women were interviewed via the telephone. One of the telephone interviews was done without audio taping due to a malfunction in the recorder and the request by the participant to continue. This individual agreed to the interview but in hindsight it seemed to the researcher, she actually wanted to relieve her anxiety about her upcoming loop electrosurgical excision procedure (LEEP). Although extensive notes attempted to capture the essence of this womans experience, it did not truly reflect her lived experience. In all interviews, demographic information was obtained initially to help establish participant/researcher comfort and then the interview guide, as seen in Appendix B, was

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34 used to direct the interview. This research proposal was approved by University of Florida Institutional Review Board. The informed consent form was completed prior to each interview. A copy of the informed consent is in Appendix C. A copy of the informed consent was given to each participant, and the signed copy was maintained in a locked file in the researchers university office. Each participant was reminded at the end of the interview that she had the option to withdraw her data from the study. Each participant was assigned an identification number. All data generated from this research which included audio tapes, transcriptions, consent forms, field notes, completed interview guides and demographic sheets, was contained in a locked file drawer in the primary investigators university office until the research was complete. Once the research was complete all data was deidentified, according to University of Floridas research policy. The interviews were audiotaped using a portable tape recorder then later transcribed verbatim by the principal investigator. The interview guide helped provide reminders for the women to describe their lived experiences. In addition to the interview taping, observations were documented in field notes. Patton (2002) suggests that note taking during a taped interview serves four purposes: 1) it helps the interviewer formulate new questions as the interview progresses; 2) reviewing field notes prior to transcription can help focus the interview; 3) the notes facilitate later analysis; and 4) they serve as a backup if the tape recorder malfunctions. Subsequent readers, three nursing scholars familiar with qualitative research were used to validate the researchers interpretive description of the participants experiences. Data Analysis Data management is the key element in the analysis process of qualitative research, and interviews, field notes, observation, and journaling generated voluminous data.

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35 Creswell (1998) suggests that the most appropriate method to grasp all of the intended meaning from the research is to structure the data into steps/categories such as: data managing, reading/memoing, describing, classifying, interpreting, and representing, visualizing (Creswell, 1998). The first step in analyzing data in phenomenology is to organize and manage the data by creating and organizing files. The next step is to read through text, make notes or memos if needed as the lived experience takes form, and initiate codes for the evolving themes or categories. Describing the meaning of the experience for the researcher is next, followed by listing statements of meaning for the individual. Groups of statements are placed into units of meaning. The next step consists of developing a textual description of what happened; a structural description of how the phenomenon was experienced; and an overall description of the experience or the essence of the experience. The last step is to present the narration of the essence of the lived experience (Creswell, 1998). This mimics Van Manens approach of structuring the data into thematic groups looking for a common thread or theme to reveal the meaning or the whatness of the living with HPV. Themes, according to Van Manen are the, elements which occur frequently in the text (Van Manen, 1990 p. 79). The analysis is seeking the meanings that evolve from the words and giving control and order to the research and writing. This is the structure of the experience or as Van Manen states, the knots in the webs of our experiences, around which certain lived experiences are spun and this lived through as meaningful wholes (Van Manen, 1990 p.90). To help with the thematic grouping a computer program was used to manage the transcriptions.

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36 Computer-assisted management and analysis of the data is becoming widely accepted and provides multiple choices in processing the data. The software program that was used to aid in data management and analysis was QSR NVivo 2.0. This computer program provides a file system that promoted organization, speed and storage. Retrieval of information with NVivo was fast and efficient as material was placed into thematic groups that evolved from the interview. Another advantage of using the computer program is the necessity/ability to look at the transcribed text line for line and think about the meaning of each sentence and idea, which aides in the immersion process of phenomenology. Phenomenological Writing The final step in this research was to create a phenomenological text. Taking what each woman said provided a written description of the phenomena that gave the meaning of each womans experience with having HPV, a sexually transmitted disease that is chronic and ever present in some form. This is a process to articulate and rearticulate the meaning of the experience and refine it to portray that meaning in text (Van Manen, 1990). Research Rigor In quantitative research, reliability and validity are used to judge and evaluate statistical findings. In qualitative research, due to the nature of the interpretive process to help grasp a better understanding of phenomena, credibility, transferability, and confirmability are used to give the study plausibility and believability (Byrne, 2001). Credibility can be achieved using multiple strategies, especially if they are built into the data collection and analysis. In this study, observation, interviewing and documentation are built in to the research. The initial research plan was to have two

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37 interviews, the first to establish a relationship between the interviewer and the subject, with the second interview getting to the lived experience. In actual practice there was only one interview by request of the subjects. Rapport was established on the contact phone call and the demographic information seeking session that took place prior to the actual interview. The option for the subjects to contact the researcher at anytime for therapeutic conversation or after thoughts was reiterated at the conclusion of the interview session. Field notes were taken during the interview to indicate body language, emotions, interruption, and facial expressions. The interviews were transcribed by the primary investigator for two reasons; first to insure that what was stated on the tapes was transcribed verbatim. Secondly, to hear what the subject was saying for a second time. This facilitated really hearing what was being said versus thus complementing and clarifying my initial perception of the interview. Another element of credibility is bracketing. In phenomenology all experiences involves an object of thought, and all thought involves experience. Thus intentionality is the direction of the mind towards an object which, even if it does not exist, is accorded the status of existence . In phenomenology the researchers perceptions of the phenomenon, which exist as a result of intentionality, must be eliminated (Rose, Beeby & Parker, 1995, p. 1125 ) Hermeneutic phenomenology lends itself to using bracketing, since bracketing, according to Husserl, indicates that prior knowledge or bias must be set aside thus allowing a fresh new look or impression about the phenomena. This fresh look is void of interference from previous interpretive influences (LeVasseur, 2003). The primary research bracketed out my desire to try to fix the participants as possible

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38 patients. Additionally, once recurring themes emerged bracketing was necessary to avoid anticipating what the new subjects were going to say. Another criterion to judge phenomenological findings is the ability to transfer the findings to other contexts. The method in which this study uses transferability is through thick description. Thick description is used to richly describe the data so that the reader has enough information to see how the thematic categories were developed. This method allows the reader to have enough information to judge the appropriateness of applying the findings to other settings (Byrne, 2001). The final criterion used to judge this research was confirmability. Confirmability is accomplished by having an audit trail that an independent examiner can track to see how the decisions were made to come to the conclusion outlined (Byrne, 2001). The confirmability of this study was accomplished by having three nursing scholars review a sample of audiotapes and transcriptions of the interviews. All three scholars are qualitative researchers and they reviewed transcripts and interviews in relation to the thematic groups which had been developed. There was general agreement about the interpretation. Summary Hermeneutic phenomenology is a description of life that is lived rather than theorized. The ultimate aim is to grasp womens experiences living with HPV and to interpret that experience. It is expected that the entire experience will be captured not only in words but also in symbols and signs of our known environment that talk to us and tells us what is meant. Van Manens method of phenomenology and Munhalls model of existential investigation give this study its structure. The ongoing process of linguistic transformation of each womans spoken word gives the meaning of her lived experience

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39 or the essence of living with HPV. Data was gathered by conducting one interview per woman and then completing a verbatim transcription. Qualitative research generates mountains of data, and at times, can be convoluted and overwhelming. Data analysis is a multiple step process that includes data management, reading and memoing, describing, classifying, interpreting, and representing the data. The computer program QSR Nvivo 2.0 aided in processing the voluminous data generated and developed a file system for retrieval and storage. In addition to using the computer program to assist in data processing, three outside qualitative researchers reviewed a sample of the audiotapes and the transcriptions to aid in validation of the findings. The information obtained was read and reread. The next chapter looks at the thematic groups that arose from what each woman said to about her experience living with HPV.

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CHAPTER 4 FINDINGS This chapter discusses findings using a phenomenological approach to uncover hidden and explicit meaning in the lived experience of women with HPV. Five thematic groupings emerged from the interrelationship of the womens world of having HPV and the meaning of this experience: first, initial and continuing feelings embedded in the experience of learning of the HPV diagnosis and how feelings changed over time; second, experiences and fears related to telling others; third, after finding out about their diagnosis, what they did about it; fourth, transformation and changing behavior after learning the diagnosis; and fifth, sharing these lived experiences with others because of a desire to help other women deal with the infection. Feelings that emerged from interviews varied slightly but in general there was an initial overwhelming feeling of what is this? and what do I do now? As each of the women began to acknowledge what having HPV really meant in their lives, they were eventually able to take the steps necessary to take back the control of self that they had initially lost. The process of regaining personal control is a self-transformation through which each woman regained a healthy self. The experience each one shared will help guide future encounters for others, both infected individuals and health care providers. Before describing these thematic groups in depth, using the womens own words, an overview of the demographics of the participants is presented. 40

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41 Descriptions of Participants Each interview was initiated by asking brief demographic questions such as age, ethnicity, marital status, employment, education, date when first diagnosed with HPV, what type of treatment was received, and current health status. Asking demographic questions helped women to feel at ease with the researcher and to become centered for the interview. Sixteen women were interviewed ranging from age 20 to 55. All but one of the women was from the north Florida area. Ethnic groups represented included eleven Caucasian women (including Italian ethnicity), two African American women, one Jamaican, one Native American, and one Hispanic woman. These figures were generally consistent with the 2000 Census Bureaus figures for the north Florida area, Caucasian at 66.4%, African American with 29.1%, Hispanic at 3.5%, and other races at 0.8 % (United States Census Bureau, 2000), which was a goal. As mentioned earlier, the literature suggests a number of predisposing factors that contribute to contracting HPV (Koutsky, 1997; Weber & Leone, 2005). Two of these, the number of partners and age at first intercourse, were asked of each participant. In this research the average number of sexual partners was 8 with a range from 3 to 30. Five women were not currently in a relationship; 6 were in a committed relationship; and 4 were married, one of these is a lesbian union. One woman had a child. First coitus was as early as 14, with nine women starting sexual intercourse at 15-16, and the oldest was at age 19. I also looked at whether the woman had internal HPV, meaning it was only diagnosed on her Pap smear, or whether she had external HPV, meaning it was diagnosed as a visible wart on her perineal or anal area. Six women had external warts and ten had HPV on their cervix. Three women were diagnosed with cervical intraepithelial neoplasia (CIN) at an early age. Of the 16 women, seven women had family members that had

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42 HPV, cervical cancer, or some abnormality related to female disease. Additionally, there seems to be a link between having a CIN diagnosis and having close family members with HPV. One womans mother and sister had HPV, and she was diagnosed CIN 3 positive with HPV 16 and 18, which are known to produce cervical cancer after having only one partner. Another woman was diagnosed with CIN 3 after being sexually active for 3 years and with only one partner. The third woman, whose mother had HPV, was diagnosed with severe cervical dysplasia/precancerous (CIN 3) on her first pap smear at age 16. All but one woman were open about their diagnoses. Ethnicity was not a central part of the inclusion criteria but the sample was reflective of the ethnic distribution of the area. It is important to acknowledge that each woman that participated in this research had her own cultural background, values, and ingrained social behaviors but no one cultural aspect appeared as a prominent factor in how they viewed the experience of living with HPV. Cultural Sensitivity Culture consists of the values, attitudes, and patterns of behavior that each individual brings to a social environment. Because this research involves a sexually transmitted disease it is important to be sensitive to the cultural background of each woman as it molds the inner self; provides a precedent for types of relationships she encounters; and defines and reinforces thoughts and feelings particularly in regards to STDs (Nack, 2002). In this study, subtle comments from the women suggest that values instilled by parents and grandparents set the tone for their acceptance or repulsion of having HPV. The initial shock of having an STD resurrected all the thoughts and words that were spoken about the type of people who get STDs. All mentioned that they were not the type of girl who got STDs. They believed that women who got STDs were

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43 sluts, whores, and loose women. This agrees with Nack (2002), who in her study on the stigma of an STD diagnosis defines it as what the putatively stigmatized think others think of them and their kind... (p.469). The stigma that HPV carries is explained by Woman M as what she thinks when she hears someone has an STD, . . that is gross, who have you been sleeping with, everyone? It is hard to be the one that you were always judging. Throughout the social history of having an STD in the United States, a moral responsibility is attached to the infected person, usually related to the gender, race, and class of the person (Nack, 2002). Men who get an STD are free from blame as they are the stronger sex and women who are the weaker sex have to be cursed and are considered fallen women (Nack, 2002). This seems to be how Woman A perceives her ex-boy friends view on having HPV. She said she did not understand how he could shower in the open showers where anyone at the gym could see his scars. It just doesnt seem to affect him. Johnson (2002.) conducted qualitative research on racial identity that includes the adoption of personal behaviors and identification with a group of people with similar characteristic. The age range of participants was 36 to 54 years old. Three themes emerged from the study: racial identity when growing up; becoming aware of racial differences, and resenting racial identity. Many persons and factors influence racial identify development. The participants in Johnsons study suggested that their identity perception was neutral during childhood, and only later in life when outside forces came into play did they become aware of differences. The world that they once knew was now changed due to the outside world influences and interaction. This created a need to

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44 alter the social environment. There is much to be said about Johnsons research, but the one particular aspect that stands out in the research is the way most of the women looked to their close friends to see how they had to react depending upon how their friends reacted to the news that they had HPV. Johnsons finding is supported in this study. Woman J was upset upon hearing the diagnosis but when her college roommates and friends were told, they seemed to help her immediately put it into perspective by saying that it was not a big deal since a lot of people have HPV. On the other hand, Woman G is not telling anyone for fear of rejection. Woman Gs remembers her mothers words from her early teens about how shameful it would be if her daughter were to get pregnant, and that it would kill her if it ever happened. On the last visit home, her mother mentioned the pregnancy but also threw in the STD shame as well. Woman G hears her mothers words everyday she has an outbreak. She feels that her having HPV would just mortify her mother, therefore she is not telling anyone. Family instilled values and ideas no matter how perfect or bizarre still need to be examined and hopefully understood to help treat, teach, or counsel a woman with HPV. Cultural sensitivity in all aspects of health care is important but especially in dealing with an individual that has an STD. The journey that these women are taking in their self-transformation must include elements of their culture and the social environment that may demonstrate other values and expected behaviors. The next area of exploration is the thematic groupings that evolved from the interviews. During the initial coding of the data, free nodes were used to code the data which created over 20 themes. After rereading the interviews, there were five thematic groups which better suited the data: feeling embedded in the experience of having HPV;

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45 experiences and fears related to telling others; finding out and doing something about it; transformation and behavior change; and sharing experiences with others. An additional topic which permeated all the interviews was the poor support and information given by the health care providers. Since it was part of multiple thematic groups it was not developed into a separate grouping, however it is a significant concern. Table 1 is included to facilitate a visual guide of the thematic groups and each subsection. Table 1 Thematic Grouping Feeling Embedded in the Experience of Having HPV -Feeling upon learning of diagnosis -Dirty and contaminated -Feelings of guilt -Feelings as they changed over time Experiences and Fears Related to Telling Others -Fears related to the change in self, future, and meaning -Fears related to sharing the family, losing face, and respect -Partner acceptance with strings attached Finding Out and Doing Something About It Transformation and Behavior Change -Self-transformation -Greater awareness of consequences of behavior Sharing Experiences with Others Thematic Groupings Feelings Embedded in the Experience of Having HPV An interview guide was used with trigger questions to help start and keep the conversation going and to ensure that all areas of interest were covered. Asking each woman to talk about their experience of living with HPV resurrected thoughts on how they felt about having a sexually transmitted disease, particularly one that doesnt go away. All but one woman said she cried with hearing the diagnosis. The one woman who

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46 did not cr, did not hear or make the connection that it was a sexually transmitted disease, and her thoughts were more of a disease that needed to be cured. Feelings varied depending upon the diagnosis, the situation, each womans perception of what it meant, their friends perceptions and acceptance, and whether it had a visible manifestation or whether it was a distant entity on their cervix. Feelings upon learning of the diagnosis Each woman used words to describe how she felt upon being told she had HPV. Words like dirty, contaminated, disgusted, ashamed, embarrassed, and guilty were used. As the women spoke these words, they said them with such emotion there was no doubt about the depth of feelings they have been living through. Woman C: I cried. I did cry. I try to ask a lot of questions, how does this affect me and again I just started a new relationship and I really like this person Woman D: Cried, for a long time, I just cried. It is unbelievable like you dont know whether what is going to happen, you dont know . I dont know! Woman G: You know when it happen, when I found out I cried, cried, cried, and cried for days [sensitive laugh] . I was miserable, like during when she told me what it was, I was, I couldnt believe it, because when you hear about people getting STDs all the time and you never expect you to be that one. You never expect to get it. You never expect to be the person that has something, because you expect somebody else to get it. You never expect to actually get it yourself and so I just cried. Woman H: I did it all. Probably more than anything, I was just sad and cried about it for a long time. The literature supports various emotions connected to having an STD. Meerabeau (1999) looks at embarrassment and sexuality of health care. He defines embarrassment as a flustering caused by the perception that a fumbled performance or event evokes an emotion that is public. He sees shame as a self-blame or self-disgust, a look within or

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47 internal perspective. Woman G stated that she was not ashamed but more disgusted with herself because she did not follow her self imposed chastity and resolution to be more selective in future partners, when a previous flame from high school called and she abandoned her position. She feels she lowered her standards and to add insult to that emotion she contracted HPV. She states how embarrassed she was. Woman G: And you know, it is embarrassing, and I dont like it, it is something that I dont like, and its just . horrible! Horrible! When Woman D was diagnosed she had been going with her now husband for over a year before she finally told him. She was her husbands first and only partner. Woman D: I was worried about him [boyfriend] and it was embarrassing. I didnt tell him for a long, long time. I mean I still feel guilty about that part. Vuokila-Oikkonen, Janhonen, and Nikkonen (2002) describe patients experiences of shame as a painful and ugly feeling, resulting in devaluation, isolation, and a feeling of inferiority. The experience of shame can disturb an individuals world spiritually, psychologically, sociologically, and anthropologically. They also note that shame has its origin as a spiritual dimension with the tasting of the fruit by Adam and Eve. In this regard, shame is a moving away from God, a loss of identity and experiencing themselves as being nobody. An example of this conflict was Woman P, who struggled with her diagnosis and decided that the only way to come to terms with it was to turn to God. She stated that she had some good conservations with a couple of her Moslem friends which made her realize that being able to handle many of her life issues, HPV included, was directly related to the fact that she had been pulled away from God and all that it involves. She has been able to feel better about herself currently because she has a positive relationship with God now.

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48 The psychological aspect of shame can be viewed according to Freud as the affect of inferiority (Vuokila-Oikkonen, Janhonen, & Nikkonen, 2002). Shame is a key factor in an individuals inner being and conscience, which can result in low self-esteem, poor self-concept or body image, self-doubt and insecurity, and diminished self-confidence. Many of the women portrayed an image of themselves as people that just didnt get an STD. Those people were of loose morals and played around a lot. Woman M has external warts, and at the beginning of the interview she had an air of confidence but as the interviewee came to the topic of warts and her feelings, she became less and less sure of herself. The following is how she sees herself and others with HPV: Researcher: What is your emotional state right now talking about this? Women M: Embarrassed! It is because I have it, and knowing who I am, I would probably, if it wasnt me, and it was someone else, I would be like, that is gross, who have you been sleeping with, everyone? You know. But being me, it is like I have it and it is hard to be the one that you were always judging! The third and fourth aspects of shame are sociological, with the interruption of the interpersonal process and anthropological in which a failure to comply with certain values or beliefs of ones culture elicits shame (Vuokila-Oikkonen, Janhonen, & Nikkonen, 2002). The psychological and sociological aspect of shame will be discussed in depth later during the section on telling others. Two of the women interviewed mentioned their familys culture and values and the effect it had on them in regards to how they felt. Woman C states she is not ashamed but she knows that her Jamaican parents will be upset; therefore she feels shame in disappointing her family. This same woman described herself as open and an advocate for women to be totally aware of their bodies. She waited to have intercourse until she felt the time was right both physically and emotionally. She made sure that her sexual partners always wore condoms. She is

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49 convinced that she was exposed to HPV from her second partner as he attempted to have intercourse without a condom, and before she could stop him they had skin-to-skin contact. She says she did not see any warts but she has always been very careful and he is the only one that it could have come from. When first diagnosed, she initially said she was not ashamed but she felt dirty and embarrassed. Women C: Im not ashamed; it is nothing that I would advertise. I think that the only shame that I would have is probably the reason why I have it, is telling my parents, and it is just because their ethnicity and background. I dont think that my parents are oblivious to the fact that I have had sexual intercourse, I mean I am sure they know especially since I live with someone. That would probably be the only shame that I would have is them knowing. I dont know if I would really be ashamed maybe a little embarrassed. But no Im not ashamed. Woman A says her mother is an Italian Roman Catholic and only been with one man, her father. Her mother will not understand or condone her having sexual intercourse with anyone other than her husband. She would like to talk to her mother but knows that it will probably never be possible. In fact, she has not told anyone except her first boyfriend, where she knows she got HPV, and his mother. Dirty and contaminated Many cultures stigmatize women who contract an STD. The feeling of being dirty or contaminated seems to be common. They historically are denoted as loose women, sluts, and persons of low morals and promiscuous behavior (Nack, 2002). Definitions of promiscuity change over time, however, Woman B, for example, feels she is not promiscuous as she had only been with three partners, and at the time of diagnosis she had only had one partner and was just beginning to develop a relationship with her second one. Women B: That made me . not, not in a way to make me feel bad but I knew that he [second partner] felt that way and it made me feel DIRTY

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50 and ashamed, [voice reflected a solemn sound, almost tearful, and emphasized the word dirty) . but I kind of felt like forever I was going to feel kind of dirty (low voice). Like contaminated, that is just how I felt. Another woman states she became sexually active at age 14 and has had a number of partners. She never expected to get an STD even though she did not use protection all the time. When she was diagnosed this is what she felt: Woman I: I cried for days! I felt dirty! I felt that people didnt want to be my friend! Stigma can carry a lot of power by marginalizing individuals. Bartky (1990) states that there are three beliefs related to shame, 1) the general belief that when someone deviates from the norm they are also labeled as someone of lesser worth; 2) the individual must realize they have deviated from this norm; and 3) in deviating from the norm the individual has altered their standing in the world. Along the same vein Hahn (2000) sees shame as an experience of devaluing internal representations. Shame can be manifested by withdrawal, attacks on self, avoidance, and even attack on others. The women interviewed were no different than the above research suggests. They viewed themselves as lesser beings, damaged and scared. Woman G: Yea, I was miserable, like during when she told me what it was, I was, I couldnt believe it. Because when you hear about people getting STDs all the time and you never expect you to be that one. You never expect to get it. You never expect to be the person that has something, because you expect somebody else to get. You never expect to actually get it yourself and so I just cried. Woman A: I was very ashamed of it! It is something like you want to speak to your mom or someone but you cant. I havent told anybody . I havent told friends because nobody wants to have an STD and . you are associated with a certain group that you would rather not be. I try not to bring it up to anybody.

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51 The emotions of shame affect how these women feel about themselves, how they relate to others, how they progress through life, and even how they view the world. The concept of shame carries feelings of guilt, punishment, self-reflection, retribution for some unspoken event that aids in devaluing an individuals self worth and self esteem. The first woman interviewed focused her emotions on the physical scars she received from removal of external warts. She did not state that it was a punishment for a horrible act or misconduct but her physical scars have left some long lasting emotional scars. Woman A: And it wouldnt be a big deal to me if . except for the scarring! It makes me feel like Im infected because there is evidence of it. Later in the interview she discusses her ex-boyfriend and his scars. . And I hate the possibility of someone looking at me, like I kind of have looked at him and the fact that he has HPV too. I hold the same stigma for him as Im sure that other people would in general for the virus that. He also has scars. Not as bad as I do. He is in the military now and he doesnt look at it as a bad thing at all. He sees a wart and he gets rid of them and that is it. That is all he has to do. If he doesnt have a wart on him he doesnt even think about it. And he hasnt had any come back and . I dont understand, he gets in the shower with all these other guys and he has scars on him, it doesnt even phase him. If I had to do that I would freak out. I just cant do thatI cant even open myself up to . or even allow them to wonder about that. Feelings of guilt A number of women felt guilty initially about not telling their partners that they had HPV and then felt that they might be responsible for transmitting the disease. The thought of transmission was almost overwhelming for several women. Woman D: I was worried about my boyfriend [husband now]. Like making him safe or anything like that. And I kept dwelling on, of my God what I done . I still felt guilty. Like I dont like keeping any thing from him [husband], you know, and I tell him every thing now . That is a little too much but because if I ever got sick or if I ever did get cancer I totally think he has the right to know. Especially if we are having sex together.

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52 Woman E: Where Im at right now, I pray that someday I can make amends to the people that I have hurt. I dont feel guilty about it because I have confessed all my wrongs to God and that is where I dont have to walk around everyday making it eating me up inside. And so I dont feel . I feel a lot more, the guilt was always from some sort of fear that I was going to lose or be exposed and I guess where Im at right now neither of those things could . they wont kill me and even if they did kill me, it still wont kill me. Woman G: I was actually seeing somebody at the time, and I got really scared and I got upset, because I was like oh my God, I gave it to him and I really got upset by that. So then I didnt have sex with him for over a month after I found out. I didnt want him to touch me. I got depressed and I just didnt, I mean, we still hung out but we didnt have sex, because I didnt want to. I was afraid; I didnt want him to touch me at all!! I was afraid! Feelings as they changed over time Each woman said that comprehending what the initial diagnoses meant, in physical terms and emotionally was overwhelming. For some, the emotional transformation from first diagnosis to present is only an abnormal Pap smear diagnosis away from reverting back to how they felt at the beginning. The further away from initial diagnosis and having normal sequential Pap smears pushes the issue of having HPV further and further back in each womans mind. Woman K was diagnosed over 23 years ago and has had over eleven years of normal Pap smears. She is an open and candid woman, and after she consented to participate in this research, she realized she had not told her current partner that she had HPV. Partly due to her age and the age of her partner there was not an awkward moment in her disclosing her HPV history. Her biggest concern now is insuring that she does not get cervical cancer. Cancer runs in her family and her great-grandmother had cervical cancer. For Woman O, it was different as she had not made the initial connection that HPV was a sexually transmitted disease, therefore she only went through the constant Pap

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53 smears every 3 months so that her health care provider could keep and eye on it for a female problem. In fact, she went through a sort of reverse metamorphosis during our interview. This woman went from thinking that she would not be able to add much to the research to actually demonstrating what a woman goes through when first diagnosed. She noticed on the consent form that another name for HPV was genital warts, which she knew was an STD but she did not make the connection. Her health care provider indicated that it was a common occurrence to have HPV on the cervix, and that they would watch it before they did any treatments/test. It was not until the interview that she became aware that her diagnosis was actually a STD. Asked if they had told her it was an STD, resulted in a totally stunned look on her face, and she replied that they did not tell her. She had just now made the connection. Woman O: I didnt, that is why it was like, when you were saying to me on the phone, how has it affected you, it hasnt affected me. I just never thought about. And if I had known about if being an STD, it would have been big time on my conscience about involved sexually with people. I just feel it is an obligation. Researcher: Well, now that you have found out it is a STD, what is going through your mind? Woman O: Wow, I have a STD; I have a sexually transmitted disease! It is kind of scary. It is kind of scary. And I think the next time I am intimate Ill be kind of . concerned! Am I passing this on or something? Yea, like you said, yea I had a pap smear but I havent had it . She also concluded at the end of the interview that she felt dirty now that she knows HPV is a STD. For six years she was only slightly bothered with repeated Pap smears but at no time did she realize that she had an STD. Now she has to process this information and decide what to do. Being diagnosed with HPV is a life-changing event. All but one woman is currently free of infection or warts. Not having any outward signs seems to give women a sense of

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54 control. Woman G states she has not had a reoccurrence yet but she is waiting for it to return. She knows it could happen. She also states that the warts arent there so she does not think about it. Other opinions were expressed by several participants. Woman B: Now I feel really like it is not, its totally livable with. Im not a real promiscuous person and its not like every weekend Im going to have to tell somebody that I have it. I dont really care anymore; I really dont care because I didnt really do anything that bad. I didnt really do any thing that everybody else hasnt done. Yet people are sexual, yes things happen, there are lots worse ways I could put my self in jeopardy and Im doing a good job but things still happen. Women A: It is a moral issue to me. To me I dont feel like it is a bad thing anymore. I still dont like it and I wish it was gone but its not something that has put me in bed for weeks on end because Im too sick to move, it doesnt affect my health in a way that most people would consider a STD would. But it . there is no discharge or smelly chunk stuff coming out to make me . I dont feel any less attractive but on a deeper level I do. Woman I: That took a while. Im kind of there now but Im not, sometimes it will be like this sucks. And other times, well oh, you know what ever, I can manage it. But book stores, Barnes and Nobles, Border, they have a little medical section and a couple of good books and that helped me. Woman E: Where Im at right now, I pray that someday I can make amends to the people that I have hurt. I dont feel guilty about it because I have confessed all my wrongs to God and that is where I dont have to walk around everyday making it eating me up inside. And so I dont feel . I feel a lot more, the guilt was always from some sort of fear that I was going to lose or be exposed and I guess where Im at right now neither of those things could . they wont kill me and even if they did kill me, it still wont kill me. Experiences and Fears Related to Telling Others The stigma of having an STD plays a major role in whether or not a woman discloses her status to family, friends, and sexual partners. The reaction varied from woman to woman but whether they disclosed or not was linked to the stigma of HPV being a STD. As mentioned earlier, shame is different from embarrassment and even

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55 stigma as it is an emotion or an internal readjustment of oneself after a life-changing event. It can be intense negative emotions that result from standards not being met, issues of failure occurring, and placing the fault on oneself (Cunningham, Tschann, Gurvey, Fortenberry, & Ellen, 2002). Sullivan and Lacy (2001) view shame as a mark of sexual abuse. A womans entire being and how she relates to others is permeated with emotions of shame. The emotions of shame affect how she feels about herself and how she acts. Having HPV is a matter of having a socially unacceptable event or illness (STD), and what is done with it. In general, most women in the study did not feel free to disclose their diagnosis of HPV. The women interviewed ranged from having lived with HPV from one year to twenty-three years. Surprisingly enough, there was little difference in their coping over time. Most of the women did have a friend to talk with about their diagnosis; only three women had confided in their mothers. All women, except Woman D, who were in a committed relationship or married told their partner right away. Woman D was diagnosed a year before she got married and it took her an entire year to figure how to tell her husband. She felt guilt constantly. She finally told him after one of her follow up gynecologist appointments, as it seemed an appropriate lead in. He was understanding and wanted to know if it was dangerous for her. Two women felt it was important to tell their future partners before they participated in sexual relations. In fact, woman H disclosed immediately to her current partner and two previous one when first diagnosed. She has had two other partners since her diagnosis and elected not to tell them. She felt she was not contagious, as she has had

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56 normal Pap smears for two years. This thought process was common for other women too. Fears related to the change in self, future, and meaning Many of the women struggled with changes that HPV brought to their lives. But one woman in particular struggled with the diagnosis in regards to how she perceived herself, how others perceive her, and changes in her future. When she was diagnosed, she was a freshman in college and was very social. She was trying to balance school work, job, and social life. A number of life changing events occurred within weeks of her diagnosis. She was trying to make sense of the diagnosis of HPV and all that it means, when 9/11 occurred. The coincidence doubly affected her. Additionally, she found her best friends boy friend in a compromising situation with one of their other housemates. She had confided in her best friend about her diagnosis as she felt she needed to tell someone she trusted. This trust was short lived when Woman P found out that her social circle of friends had learned that she has HPV. There was no support from the circle of friends. She felt that her life was over and depression set in. Before something drastic happened, she decided to quit school, move back home for support emotionally, and seek better medical help. Subsequently she went through many changes. A first impression of this woman during the interview was that she was confident and anxious to tell her story to confirm that she was going in the right direction. Woman P was able to express how her life had changed and she credits a critical element in a transformation was rekindling her faith. In her words: Woman P: I had told these people on my job that I was happy at my job. And they talked about Allah and I talked about God and we just started down a different path and I thought that one of the reasons why things were going so bad in my life was because I wasnt having a stronger faith and so I became more driven to have a self awareness of what was going

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57 on with my self and to have a stronger faith in God and to build my relationship on my own with myself; to become more confident, and to not let things regress me. And then I have the relationship with God and I realized that maybe things were so bad because I wasnt paying attention before. Like I was just letting everything go to the wayside and I really had to have a stronger belief and I know you really; I know some people do not like to mix science with religion but I felt like a lot of things were taken away from me when I became more religious or I became stronger in that faith. Fears related to sharing with family, losing face, and respect Disclosing to family members that one has an STD was an insurmountable obstacle for some and second nature to others. Woman L really did not have a choice about telling her mother since she was 16 when she was diagnosed. She initially went to a health department to obtain birth control pills and a week later the results of an abnormal Pap smear came in the mail. The letter scared and confused her so much she had no choice but to tell her mother just to make sense of the diagnosis. All she knew was she had cancer-like cells on her cervix and they needed to be removed. Her mother was a great help throughout the treatments and follow up visits although she did manage to chastise her for becoming sexually active at an early age and ended up blaming her boyfriend. Upon diagnosis Woman L stated she only had 2 partners within the previous year as she had become sexually active one year prior. Woman A mentioned she would like to talk to her mother but due to her strict religious upbringing and Italian heritage, she feels her mother would never understand. She had made a few attempts to bring up the subject but her mother just did not want to talk about it. This woman has not disclosed her diagnosis to anyone other than her boyfriend that she got HPV from, and his mother, who is a nurse. She did say she had to tell a man she recently had sexual relations with only because she felt he needed to know in order to protect himself and his girlfriend. She was not proud of this one night

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58 encounter but she feels she probably did not expose him as she is vigilant in watching for lesions and has not had any in a while. Fear of rejection was present in many womens thoughts but what made this short-lived was the acceptance by close friends and partners. Finding out that you are not the only one in the world that has this infection is consoling, but it is still life changing. Woman G fears that others will look at her as she looks at others that have an STD. Woman G: it bothered me a first thinking she was going to tell a bunch of people. Uhm, now with another partner, Im just afraid, Im more afraid that they are going to outcast me and they are not going to want to talk to me anymore! That is the big thing. Especially, if it is like potentially like a husband, or life time partner. Nack (2002) mentions that women with chronic STDs view themselves as they view others with the same stigma of an STD, good girls do not get STDs and bad girls do. Along the same lines, Taylor (2001) defines stigma as a distinguishing mark of social disgrace or a deviation from the ideal or expectation. Woman D discusses her impression of one who has an STD: Woman D: It is easier in the sense that you have somebody else to talk to about it. Hum, it is also easier because, like, I guess it is the same concept like you are not alone. It is a common thing, so, I mean not because you have bad hygiene, or something like that but I mean that a lot of people I know relate an STD to a person who has sex all the time or a person who sleeps with a bunch of people, or you know a hooker on the street. That is the hard part, that people associate STD with that. I had the same concept when they told me it was an STD and all. I thought oh my god! (laughter) I remember in high school there was this one girl who had herpes and everybody knew she had herpes because she would have these outbreaks on her mouth. They were just the ugliest things and people made such a big deal out of it. Oh my god, STD. Partner acceptance with strings attached Disclosure to a partner can have devastating results, and surprisingly, all but one of these women had no major issues with their partners acceptance. Woman E was in a

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59 committed relationship with many strings attached. When she was diagnosed she did not disclose to her partner for quite a while. The guilt was overwhelming and so when she finally told him, he used this against her to the point of emotional and psychological abuse. When she finally told him she felt she needed to make up for her dishonestly so she tried everything in her power to please him to the point of compromising her values. He found he could request various sexual fantasies of her and she would fulfill them. Women E: I dont even know why, but uhm, my boyfriend that Im with now, we were together for, we have been together for three years and we have been having unprotected sex for a month and I kept having the nagging feeling like you should have told him about this! You should have told him about this! But I never had had any genital warts, never had a manifestation of this virus that they said that I had. And so part of me didnt want to believe that I had an STD!; because I had never seen it. And so a part of me was kind of in denial about telling him that I did. After about a month I told him and he was of course terribly upset with me for a long time held it against me! I mean even now it is hard for him to not hold that against me. He has had, he has manifested genital warts, like on different places. Like one time on his stomach and one time on his mouth. That was always kind of weird for me because it was like, uhm like a mirror bouncing back something that I wasnt able to see in myself. The first year of our relationship I spent a lot of time seeking out girls to hook up with so that the three of us could have you know, crazy bisexual sex; and all the time this nagging feeling that you are doing exactly what you did to him to these other girls. To him it was completely justifiable. If I could do it to him, I should be able to do it to anyone. But I never met to hurt anyone nor wanted to hurt anyone. I was too ashamed to admit it until it was too late. And that went on for like I mean with us having sex with other people or other girls, I should say, for almost for the whole duration of our relationship. And he would always use, I should say always, a couple times he didnt want to use condoms but I always made it a point that he would but that is still a double standard. And I guess therere so much bad feelings about . about what I was still participating in, the fact that I was still passing the virus on but not being responsible for it, and he didnt even seem to think that I would think it was a big deal. Finding Out and Doing Something About It As mentioned earlier, six women had external warts and nine were diagnosed with internal HPV. The diagnosis was life altering for the women but the six who suffer from

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60 external warts seem to struggle more with the diagnoses than those ones who do not see their HPV but are only told about it. Woman A will not even undress at the gym where others may see her scars where the pubic hair did not regrow. Woman M has a close friend that has internal HPV and this is a comment she made about the difference between her infection and her close friends infection: My friend has it but she doesnt have the lesions, she doesnt know the full effect of how it feels to have this nasty genital warts!!! (Embarrassed laughter to almost tears) It is so disgusting! Woman M has a current outbreak so she is living in the present moment of having HPV. She stated that she would rather have gonorrhea or chlamydia than HPV as she said they can be treated; the warts will have to be dealt with for the rest of her life. Women who found out their diagnosis from an abnormal Pap smear were notified either by telephone for a follow up appointment or by mail. The women who had suspicious external lesions had the diagnosis confirmed immediately. Overall healthcare providers were less than adequate in giving the women their diagnosis and telling them what to do about it. The major treatment plan was to have a colposcopy, a procedure that takes a small biopsy of the cervix, as eleven of the women indicated. Woman L had this to say about her experience of being diagnosed: Woman L: I went to a gynecologist and they did the biopsy to see how bad it was. And they originally thought it was just moderate and that they would be able to freeze my cervix and complete it. The day of my procedure they called and changed locations on me saying it was a lot more severe than they thought it was and that they were going to have to do a completely procedure which scared the crap out of me. I went and had that done, it was pretty invasive, they swear it doesnt hurt. After 4 bottles of lidocaine I could still felt everything. I cramped, and bled, and whatever, it was awful. I had that done and then it has been normal ever since. I havent had any problems, I never had genital warts, I just had the HPV. Im so thankful for that. I have had normal Pap smears ever since.

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61 She was upset that they did not prepare her well enough about what to expect, especially the pain involved. A number of women who had a colposcopy mentioned how painful the procedure was and how unprepared they were. Woman N was not told that after cryosurgery she would have a copious amount of liquid discharge once the freezing thawed. This was extremely upsetting to her as she was living in the dorms at college at the time and did not have a good support system. All the women complied with follow-up Pap smears as this is a marker of how their HPV is progressing. Many of the women use this marker to determine if they are going to disclose to a partner or not. The women that had internal warts used the normal Pap smear as a gauge of whether they could spread HPV or not. On multiple occasions, the women said when the Pap results came in the mail and it was normal then it was time to celebrate. Many of these women felt that men did not take this diagnosis as serious as they did. Woman H put it this way: For guys . for one I dont think that they get tested as much as girls do. If they dont see it, they are like, I dont have anything. And especially if they hear about HPV and the fact that it is cervical cancer, its like Im safe! And girls, I think, are a little different to a certain extent, like because my roommate just found out that she has it. Even though she knows that it is a small percent cervical cancer, she still hates that she has it and it is horrible to her that she has it. Woman N: It is kind of like . I dont know it is sort of one of those things that everybody has it, it is not that big of deal, dont really worry about it you are going to be taken care of and you are going to get your Pap smears every year, you will be ok and so it never came up. You know as the years have gone on, it is one of those things that I do wish I had more information, I do wish I knew more of the biopsy results, and to find out, is this the kind, I think there are so much kinds of HPV that are more likely to cause cervical cancer than others. I dont know that history now, these 11 years later.

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62 Woman M mentioned that her boy friend went to his physician to check a suspicious lesion and the physician said he was not sure what it was but if forced to make a diagnosis, he would have to say it was a wart, but no treatment is needed as it would go away. Getting the diagnosis posed many questions that each woman had to resolve, particularly with the treatment plan. Follow-up Pap smears and examination are all part of the treatment process. In addition to the physical treatment, each woman must go through an emotional and psychological change in order to move on with life. This sort of thought process is the self-transformation that each of the women has to travel in order to get a new perspective on the disease in their life and what having the disease means. Transformation and Changed Behavior The literature indicates that when an individual is faced with a disease that mandates change, there are stages they go through to help them with the transformation (McQuiston & Webb, 1995; Nack, 2002; Nack, 2000). Transformation was significant in this research, as it is the process for women to take back control of the diagnosis of HPV and their lives move on. The women in this study described the experience and diagnosis of HPV as a life-altering, self-transformation. Self-transformation The transformation started at their diagnosis, a critical changing point in their lives, and continues to present time, affecting them spiritually, culturally, psychologically, socially, and physically. These forces whether positive or negative had an impact on their lives. Woman E was able to move forward in her ability to live with HPV by reinvesting in her faith. She mentioned, once she turned life events over to God, the burden of having HPV was not as overwhelming. Several women mentioned their inability to confide in their mothers due to rules imposed by their familys culture, so having HPV

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63 was an unspoken burden with these women. All women had emotional ties and psychological issue to overcome in order to move on. Many of these issues were tied to the stigma that accompanies HPV. Dating for the single women has changed. Woman A only goes out with a group of friends so she can use them as an excuse to prevent being alone with a man. Several women mentioned their sexual libido has diminished. Woman C has a life partner and she mentioned if they never had intercourse again it would be fine with her. Woman M had felt something different in her genital area and subconsciously feared it might be something bad so she went to the health clinic. She did take her best friend just in case but upon hearing the verdict she lost control both figuratively and emotionally. Her friend was able to help her through the diagnosis and beyond as she had been diagnosed six years ago, but still with tears in her eyes she said, I hate that I have this. She has external warts that resulted in more emotional and physical trauma than occurred among women who had it on their cervix. Woman A only sees her scars, Woman M only feels for warts every time she voids. They have both lost a part of control over self. As the women described their struggle to regain this control, tears would appear, voices would become somber and softer, and their journey would begin. From what was learned from this research, if they had been diagnosed with gonorrhea, an STD, it would not have resulted in a transformation of this magnitude, although the stigma of having an STD shakes a persons core values. This life-altering disturbance mandates action to move forward. Women B made these comments when asked what she would tell other women that find themselves in the same situation: Woman B: I would tell them that I know its a surprise and its scary, and it seems devastating at the time . there are lots of things you can do and

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64 it is not the end of the world (spoken very slowly and thoughtful). These problems that seem so huge now, when you start doing your research you are going to realize that lots of people have these problems. You can live your whole life and be fine. She has been dealing with HPV for over four years and has made remarkable progress. She initially struggled but after all the crying and treatments there becomes a time when you know you must go on and evaluate where you have been and where you want and need to go now. These women had to make choices in treatments, disclosure to family and friends, experience alterations in sexual encounters, redefinition of self values and trust issues, and even address future fears of whether they will be able to have children. Woman Es choices seem almost unreal and destructive in nature. As mentioned earlier she allowed her boy friend to exploit her guilt of spreading HPV to him and not telling him, by asking for various types of sexual encounters that she only performed because she felt guilt. She did not take ownership of her condition for many years. Only after internalizing what having HPV meant to her was she able to transform her self and move forward. The multiple influences throughout the transformation process are dynamic and not totally inclusive. Women move back and forth in their transformation. Woman K mentioned that as soon as she was diagnosed, she told her current boy friend and contacted her other two previous partners. This may have been partially due to her openness but she also hoped to find out how she got it. When none of her partners disclosed they had HPV, she then realized that she may have been the person passing HPV to others, thus changing from being a victim to being the source. After the interview, Woman K asked if she could pass on the virus even though she had had a clear Pap. At this point she had to rethink her current situation.

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65 Woman A, still carries a warped view of her self-image and the stigma of HPV being a sexual disease. Her physical scars from treatments remind her daily of her HPV infection. She bases her core values of who she is on her physical being. She is fearful that someone may see her scars, which, to her, demonstrate a lack in social value. She hides both physically and emotionally. When she goes to the gym to work out, she only dresses in a closed area for fear someone may see her scars. Additionally, her dating habits have changed to the point of only going out with friends to avoid entering into a situation that would lead to intimacy, which would require revealing her scars. None of the women in this study choose total life-long celibacy but a greater selectivity of with whom and when sexual encounters would occur were prevalent. Comments about their sexuality and libido did come into question. This was linked to the fear of transmitting it to their partner, as well as to knowing they have a disease. The freedom of having intercourse whenever and with whomever was taken away from many of the women who have HPV. Woman P, who had 30 partners, did not seem affected by the number of partners she had. In fact, she indicated that it was expected, and only because she had HPV did she consider limiting her encounters and being more selective in her choices: Woman P: And I will say that I have changed over the years since that Im not as sexually liberated as I was before. I was very sexual and I really didnt care what other people thought, I would say, I would tell people that I was fast. I would say I like this guy, I like this guy . I dont go out as much as I use to. I use to go out a lot when I first found I was . I would go out a lot, I would drink a lot, I would do drugs, I would stay out on the street and I didnt talk to men a lot but I found happiness in other things that really werent good for me either. Woman G mentioned she just stopped having sex initially. Woman G: I was already afraid that I had given it to him since we didnt use any protection at all. I dont know, I got depressed and I just didnt, I

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66 mean, we still hung out but we didnt have sex. I didnt want to. I didnt want him to touch me at all!! I was afraid! The women in this study all had some sort of follow up treatments (Pap smears, topical treatments for the external warts, or LEEP and colposcopy procedure). One woman mentioned that she wasted an entire year trying to figure out how she got HPV as she did not considered herself promiscuous and only had 3 partners. She does not think about how she got it anymore. Knowledge is power and learning everything they could about HPV was consistent with all the women. They wanted to know what it meant to have HPV, where did they get it, and why them. Part of the transformation process was how they felt currently about having HPV. The transformation that each woman made was at her pace and comprehension. B: Now I feel . really like it is not, its totally livable with. Im not a real promiscuous person and its not like every weekend Im going to have to tell somebody that I have it. It changed me a little bit in that my physician that performed the cone biopsy on told me that sometimes it would interfere with the ability to have children? And I had a really, really didnt want children and I mean I like kids but I kind of thought you know it is such a commitment and at that point it changed my whole way of thinking. It made me realize how important that was and of having a family of my own. And I think Ive been a little bit too focused on that since then like I really, really, want it so bad but I know I need to wait. But at the same time I, it scares me a little bit. That one day that day will come and Im not going to be able to have children. That is not what you talked about, you talked about in class about problems, of transmission. When a woman with HPV is able to come to the point of having a greater awareness of what the experience of HPV is, she is better able to internalize the consequences of her conduct in the past and present thus allowing the self to move into future experiences. This internalization is the core of living and shapes new experiences. Greater awareness of consequences of behavior All women were painfully aware of the consequences of getting HPV. I use the word painfully as the changes made seemed to have more of a negative experience than positive one. Changes that occurred were dating dynamics, decrease in libido and intimacy, increase in guilt, moving toward making choices with head and not for physical and emotional desires, uncertainty of passing the virus on even if they had no symptoms;

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67 fear of not being able to bear children, and fear of cancer. The process of dating and looking for a life long mate has changed. Woman G recently broke up with her boyfriend of three years and now she has become interested in a married man. She has not been intimate with this man for fear of passing the virus on to both him and his wife. She struggles with having HPV and has imposed a period of celibacy just to keep her sanity. Both Woman I and Woman P stated they are currently single and not necessarily looking. In the past neither thought twice about being with a guy if he interested them, but now there has to be more to the relationship before sex is initiated. This is quite a change for Woman P as in the past she proclaimed that if she liked a man she was in bed with them immediately; I am fast. Change in libido or altered mood was common among all women. Woman D said that it is hard to want to have sex if you feel guilt about not telling your husband that you have HPV. She also said that her desire and ability to get in a loving mood has been difficult since the diagnosis. In fact, this was true for a number of women. Woman C has been with her partner for over 5 years and she says he is her best friend and they share everything but if they never had sex again it would be alright with her. The fact that most of these women are not married indicates that their interest in dating is a big social experience. Woman H stated it this way: Woman H: Well, Ive recently, (laugh) had this big like realization and just about this whole dating aspects in general and the next guy Im with for one, he will definitely know before hand because I want to wait a really long time before we ever have sex. You know, I want him to be the guy Im going to marry, so if he is that guy, hell know, you know, definitely. A positive aspect of getting HPV is the necessity for these young women to mature before their stated years and be role models for others. Woman H who is 20 has realized

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68 that there are a lot of people still being careless about sex, but for her the diagnosis has helped her mature. Woman H: maybe I would have realized it more as I got older but I still know lots of people that are my age that I consider very intelligent people that have no idea, really, like they think it is not going to happen to them. They still have that, careless attitude about sex, and why not. In a way, I think getting it when I did helps me like, maybe like stop having sex to a certain, like maybe I would have sleep with more people you know or done more careless things but it made me realize like WOW, it happened to me and I dont want it to anymore! Two other underlying consequences that seem far removed are the ability to have a child and possible cancer. Fourteen women expressed a desire to have children. Woman K is past child-bearing age and Woman J has a son and anticipates having more children. When she was pregnant she talked to her obstetrician about possible troubles with having a history of HPV. She requested every type of STD screening including an HIV test. She was not concerned about her husband being unfaithful but only wanted to insure her offspring had a good start. The women who have had colposcopies are fearful of not being able to conceive and carry children. This is a real fear but most felt they do not dwell on this concern as they are not quite ready to have children yet. The cancer scare was not a major issue with these women. They felt that all that they have been through, including multiple repeat Pap smear testing and colposcopies, make them have a sense of security in knowing that cancer will be detected early enough to prevent it from being life threatening. The last thematic group that emerged from the interviews was the ability to share experiences of having HPV with others. This is divided due to a change in interview technique but still a valuable aspect of the essence of living with HPV.

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69 Sharing Experiences with Others The first nine interviews had a different flavor than the last seven interviews. As mentioned earlier, my committee recommended that my interview technique be modified and to ask fewer leading questions. Therefore, the last seven interviews lack data on sharing experiences with others and the type of early sex education. They do contain the overall lack of meaningful information and compassion received from their health care providers. This supports findings of the American Social Health Association (ASHA) and the CDC, which reported that more than 60% of individuals diagnosed with HPV felt the service they received from their physicians upon the diagnosis was unsatisfactory (ASHA, 2001; CDC 2002). Woman K described her treatment from her gynecologist: Woman K: . to have my GYN be embarrassed to tell me about it [HPV]! I was kind of surprised! Looking back on it, not so surprised really, because if I had ended up in an STD clinic at the health department, (finger snap) they give those diagnoses out everyday. He made me feel real bad! I dont think he meant too but he did. He made me feel kind of cheap and I dont think he meant to but I felt that way. I felt like, women like me do not get STDs! No! White college educated, fairly bright women who are pretty savvy. But so that was probably was the most, probably stood out the most about having it. During the 18 th International Conference on the Papillomavirus in Barcelona, Spain, July 2000, Vezina and Steben (2001) presented psychosexual impacts of HPV. One of the emotional reactions associated with being diagnosed with HPV was anger toward their attending physician. The researchers mentioned that individuals who are diagnosed with HPV expect their health care providers to supply them with requisite medical care, and to display an attitude of openness and empathy, as well as to help them deal with the psychosexual consequences of the disease. Health care providers need to take time (either on the first visit or follow up visits) to ensure that the patients understands the diagnosis and to answer any questions that come up following the mental

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70 and emotional processing of the diagnoses. One woman mentioned how she felt on a follow up visit, the nurse practitioner did not remember where the external lesions were or how many. This made her feel like she was just a patient and that this life changing diagnosis did not mean anything to the health care provider. All the women in this study mentioned that they did not understand or comprehend the initial diagnosis. This was probably partly due to defense mechanisms to protect the self from bad news. This stress response coupled with the lack of information about what the diagnosis means and what the future will bring hindered full understanding. Practitioners need to be able to communicate the appropriate, accurate information at a level that matches the individuals ability to comprehend and understand this disease and all that it brings, to aid the healing process. Women desire positive treatment from healthcare providers as this is a vulnerable time; a seemingly small issue may do some major emotional damage. Vezina and Steben (2001) listed a number of behaviors that HPV infected individuals desire from the healthcare provider. Respect without passing judgment, empathy, and open-mindedness are the three most important. Other important behaviors include attention to what the individual is saying not what the provider expects or anticipates they will say, availability for follow up visits and questions, and clarity of information about the diagnosis. Summary Linguistic transformation is a method used to help clarify a lived event for someone. It works through the process of first using a normal discussion about the experience to establish a base of what the world views as normal. Then it proceeds with a view of how an individual views that event. Whether they feel it is normal or abnormal

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71 is irrelevant. It is intended to augment the summary of findings as it helps understand the essence of having HPV. Haase (2002) uses linguistic transformation to help understand sameness in differences. Uncommon experiences are experiences with which most of us are not familiar. The sighted person will never quite know what it is like to be blindOn first sight it would seem impossible to really understand what people experience who seem so very different from us (p. 61). An example is the description of a fictional typical teenager, Jane, who has been sexually active for about a year but does not have HPV; followed by a description of Women Bs experience of having HPV. Jane is 18 and a freshman in college and currently has a boy friend that she has been intimate with over the past six months. They used condoms but Jane feels she needs to get on the pill just to be on the safe side. She has just seen her health care provider and everything was all right, at least her doctor didnt say she saw anything wrong. A nurse told her about the birth control pill and what to look for. Jane chats about her visit with her boy friend and they go to a movie. Three weeks later Jane gets the notification that her Pap smear was normal. She hadnt worried about it because she is a good girl and she loves and trust her boyfriend. Only loose and bad girls get STDs. Woman Bs experience with having HPV provokes emotion and thoughts. She has had only three total partners and used protection totally with her first partner of three years. When they broke up she was devastated and dated an individual twice and didnt use protection either time. One year later she was diagnosed with HPV, CIN 3. She mentioned a number of times that she wondered where she got this HPV as she has been fairly careful and protected except for her second sexual encounter. We had waited 9 months to sleep with each other, to be intimate pretty much at all. And we were very careful, I went and got on birth control and we always used protection, but he was away at college for two years. We had a long distance relationship. So he couldnt take it any more and broke up with me so I went through a brief self-destructive period. And I was with somebody two times, the same person, unprotected. And now a year

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72 later I was diagnosed with CIN 3. So I will always wonder where it came from. I know for a fact that people will not believe you [that you are not promiscuous] because people are cynical. But I know he was not with anybody else. That doesnt mean you cant get things other places. My mother also had it before they knew what it was and eventually had a hysterectomy. My sister also has it. So maybe we are more genetically more susceptible to it, or you never know but I probably ruined a year of my life trying to figure out where I got it. Also, having to go back and tell that one boy friend who we had been so careful, that you have HPV. We had tried to get back together after that, I had to go and tell him that and he acted like his sex life was over for the rest of his life. That made me not in a way to make me feel bad but I knew that he felt that way and it made me feel DIRTY! And ashamed (voice reflected a solemn sound, almost tearful, and emphasized the word dirty). The five thematic groupings describing what it is like to have HPV have emerged from in-depth interviews with these 15 women. The first thematic grouping was the feelings within the experience of having HPV such as shame, guilt, contamination, embarrassment, and the sense of feeling dirty. The second thematic grouping was fears involved with disclosing the HPV infection to partners, family, and friends. The third thematic grouping was what type of treatments occurred after the HPV diagnosis and their experiences surrounding this event. The fourth thematic grouping was the process of self-transformation which encompassed various input from spiritual, emotional, psychological, social, and physical disciplines. The fifth thematic grouping involved the openness of the women to share their experiences not only with the researcher but also with others that find themselves in the same situation. This experience was truly humbling as well as exciting. The information can be useful in multiple settings, including education for health care providers and implications for nursing science, and future research. The next chapter will expand upon these findings.

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CHAPTER 5 DISCUSSION Revisiting the interviews and transcriptions brings forth the thoughts and emotions that were expressed by each woman during the course of this research. There is truly no other way to mine for the meaning of what it is like to be diagnosed with HPV. During the interviews, women often transformed their air of confidence to a demeanor packed with guarded raw emotion, contributing to seeing the true lived experience or the essence of having HPV. Their words and body language were congruent in expressing the outcome. Nothing was matter of fact, but there were underlying groups of thoughts that make this study significant. Human papillomavirus may just be a virus that can manifest itself during times of stress or be self-limiting at other moments, but the unpredictability and the magnitude of this virus make it a trigger for a life-altering course of events for an infected individual. The diagnosis with HPV makes it difficult for both the infected individual, as well as the health care provider. For the infected individual this diagnosis is life changing and needs attention and education to minimize the impact. Cervical cancer was not as big an issue with these women, even with the three women who were diagnosed with CIN 3. The contributing factors for this were the age of the participants with a majority of them in their 20s; they were healthy at the time of the interview (only one was currently struggling with an outbreak of external warts), and cervical cancer seemed so far off because most of the women realized that Pap smears could protect them from getting 73

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74 cancer. However, the main concerns voiced by these women were how to cope with the idea of having a sexually transmitted disease, how to prevent future ramifications of infecting a partner, a future husband, an offspring, and whether they would be able to have children. Stigma of Having HPV All participants were concerned with the stigma of STDs, regardless of cultural background. Woman O did not react to her diagnosis of HPV, as she only understood it to be a female problem that needed watching. She found out that HPV is an STD during the interview session, and once she comprehended that, she immediately responded with repulsion of now having an STD. Sexually transmitted disease stigma seems universal no matter what infection it is. However, how women deal with this stigma may vary depending on the specific culture involved. Additionally it is closely tied to cultural interpretations of gender. Nack (2002) mentions that it is more acceptable for a man to have an STD; it is a sign of his power and ability to perform sexually. Women are essential partners in sexual intercourse but there is a double standard levied upon them. A woman is considered dirty, loose, and of lower class if she contracts an STD. The stigma of HPV being an STD destroyed values and altered perceptions of self. Many commented on people like me do not get STDs; only sluts or loose women get them. Rather their lives with HPV, is a self-metamorphosis or transformation from who they were at diagnosis to who they are today and how they cope with HPV. This self-transformation is significant in each woman as she comes to terms with having HPV and deals with it in her way.

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75 Self Transformation Self transformation includes a sense of achieving a higher consciousness by having a deeper appreciation of life, being closer to others, and having more meaningful relationships. Not every woman in this study has reached this point but many have made great strides in being in control of the events related to having HPV. Self-transformation can be expressed as coming to grips with the issue of having HPV and changing ones self. This change is not arbitrary but purposeful. The initial loss of ones self control or a sense of powerlessness over her health mandates that the woman partner with her health care provider, family, and trusted friends, in order to first comprehend the diagnosis of HPV and then move toward regaining the self control over her health and life. Changes occur with the moving through the diagnosis, the treatments, and emerging at a point where the body, mind, and spirit are at peace with the current situation and control has been restored within self. Most health care providers in the study failed in giving the women the information they needed and wanted to make informed decisions about their treatments and future ramifications. During the writing of this research it became apparent that the guidelines and policies established by the American Cancer Society (ACS) contributed to providing clear and accurate information to women. New Guidelines/policy for Pap Smears New guidelines for Pap smears have been developed by the ACS and endorsed by many womens health organizations. These new standards can adversely affect a number of women in this study. As mentioned in chapter one, the rationale for changing the policy stemmed from attempting to do less harm in regards to testing and treating HPV in young adolescent women due to the regression of the virus over a period of time. The

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76 data on regression indicates that young women ages 13 to 22 infected with high-risk HPV 16 and 18 show a 70% spontaneous regression rate within three years and a 90% regression rate of the low-risk HPV 6 and HPV 8 (Saslow et al., 2002). The time for a high-risk type (CIN 2) lesion to progress to carcinoma in situ or cancer over the age of 51 is 70 to 80 months; women ages 26 to 50 progress in 41 to 42 months; and under 25 women progress in 54 to 60 months (Saslow et al., 2002). With these regression statistics, a conservative estimate was used that covered all ages groups lead the ACS to adopt 41 months for Pap smear intervals and initiating Pap smears three years after first vaginal intercourse. The upside to these policy changes is that they may prevent overdiagnosis and treatments and possible cervical damage of the women who had LEEP or colposcopy procedures which increase the risk of not being about to get pregnant or carry to term. The downside to these changes is that they could increase the possibility of not catching and treating for severe cervical dysplasia in time. It is alarming that three of the women in this study had been diagnosed with abnormal Paps, indicating severe cervical dysplasia with precancerous lesions (CIN 3) as teens. This is a little suspicious as usually CIN 3, displaying precancerous cells on the cervix occurs after being exposed for a number years, as previous mentioned (CDC, 2002; Saslow et al., 2002; Weber & Leone, 2005). Statistically speaking, using the new guidelines, these women would not have been tested for 36 months. Since their first Pap smear picked up the carcinoma in situ, hypothetically speaking, if these women would have waited three years after first coitus, they might have developed cervical cancer. Additionally, the American Cancer Society Pap smear guidelines do not address a policy for a woman starting oral contraceptives. Woman L was diagnosed with CIN 3 at

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77 age16 when she went into start oral contraceptives. There seems to be no specific guidelines requiring a Pap smear prior to starting oral contraceptives (OCs), but in many private family practice settings, it is a standard procedure to get a baseline Pap smear to insure that the addition of an OC does not exacerbate an unknown condition. The ACS indicated that what effect oral contraceptive use has on increasing cancer risk is unknown and that further research needs to be conducted (ACS, 2005). The fifteen women in this study poured out their feelings and emotions out while relating what it was like for them to live with HPV. The internal growth that all the women portrayed in changing and rearranging their life priorities was amazing but what was most striking was the maturity level of the women in their early 20s. Three of the young women had to make life-changing decisions due to the diagnosis of severe cervical dysplasia (CIN 3). When Woman Ls first Pap smear came back precancerous at 16, she did not even understand the diagnosis. All she wanted was to be started on birth control pills and she ended up requiring a LEEP procedure. Her fears six years later are not so much concerning the possibility of having cancer but about bearing children. The carefree sexual revolution for these women stopped, and doubts began about new encounters, the potential of spreading HPV to future partners and husbands, and what they would do if the HPV were to manifest it self again. Marked differences in the ability to cope and change existed between the women who had external warts versus women with hidden, internal cervical abnormalities. The physical and emotional scaring left by HPV was higher in the women with external symptoms. Fear of being the one who could be passing it on to others was emotional and thought provoking; as was the fear of not being about to have children because of treatments or outbreaks. A positive

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78 self-transformation occurred in most of the women, resulting in increased confidence and optimistically looking forward to future events. Health care providers play a major role in the ability of women to deal successfully with a HPV diagnosis. In the case of the women in this study, they failed terribly. These women wanted better information from providers and access to written material, which they considered important. Implications for Nursing Research and Education The nursing profession code of ethics states that nurses practice with compassion and respect for the inherent dignity, worth, and uniqueness of every individual, regardless of social or economic status or the nature of the problem (Katz & Hirsch, 2003). Nurses are the mortar that holds many elements in health care together and can be major change agents for women living with HPV. The women interviewed were not given proper care, empathy, or respect. Most of them had to be aggressive in asking for answers, depended on friends, or searched the internet for the information they needed. The best information came from other women or the internet. Feelings and emotions described by these women indicate a need for better strategies in caring for women living with HPV. The findings presented here can be used to develop more sensitive and supportive protocols for current health care providers to implement in the practice. The following are questions this research has raised questions that need to be addressed particularly by health care providers: 1) What do women diagnosed with HPV want and need from the health care providers; 2) What information do health care providers need to effectively care for women with HPV; and 3) How can health care providers support the process of self-transformation which allows women to cope with their diagnosis? The information and education needed in HPV care was summarized by Anhang, Goodman, and Goldie (2004) who stated that the basic information desired by individuals

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79 is transmission, prevention and detection, treatment, progression without treatment, and risk of cervical cancer. In regards to transmission, women want to know that HPV is sexually transmitted. This sounds basic but most of the women in this study did not know that HPV was sexually transmitted until weeks to years after the diagnosis. Secondly, they want to know exactly how transmission can occur and what they can do to prevent or minimize the risks, including the risk of HIV/AIDS. In this study women wanted to know the duration and frequency of HPV outbreaks, whether the virus would always be present or if there might be a spontaneous resolution of the infection. They wanted to know what their chances of getting cancer were, and whether the Pap smear and follow-up treatments really prevent the development of cancer (Anhang, Goodman, & Goldie, 2004). According to Anhang, Goodman, and Goldie (2004), the information that needs to be included in the educational portion of an HPV diagnosis should include the following elements. The first inclusive element in education is the understanding of the different types of low-risk and high-risk strains of HPV. This will allow women to make rational decisions about their health care. The women in this study, once they knew it was an STD and what to expect, could make choices about whether to have intercourse, whether to disclose to a potential partner, or whether to be aggressive in their treatment. The second education point is the likelihood of a woman with HPV developing cervical cancer. Women really want to know and understand the characteristics of HPV, including the fact that HPV does regress even without treatment but that in some cases it can come back as cervical cancer. Not telling them or sugar coating the risks does not help in their decision making endeavors.

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80 The third educational point is to explain how Pap smear results can be normal, but they will still have HPV. A more specific explanation of what the Pap smear really does and how it relates to HPV would be helpful. The research on HPV and its treatment and outcomes is a fast-moving field of study, therefore, educational approaches also need to be continuously updated and further supported by continuing research. This would avoid the problems encountered by the women in this study, who received information that was vague, outdated and useless or simple received no information. Several women in this research enrolled in elective college classes on human sexuality to better understand HPV. They also searched for answers through dorm talk, friends, or the internet. The proper course of action after a HPV diagnosis is to schedule a follow-up appointment within the next two weeks for a time for counseling and educating. This time lapse will allow the woman to seek advice from friends, family; others with the same diagnosis, or the internet and then come back to the office with more specific questions. The information needs to be as factual as possible as women are making health care choices based on it. Future Research Research needs to be ongoing in diagnosis, treatment, and prevention. With the inception of liquid cytology the ability to test for HPV after indications of an abnormal pap has really helped in the diagnosis element of this virus. Current technology development goals included better home HPV tests so women can be proactive in their health (Anhang, Goodman, & Goldie, 2004). A vaccine to prevent HPV transitioning into cancer is close to completing the clinical trails and it hopeful for preventing new infections as well as minimizing reoccurring episodes in the future. After two and one half years of follow-up, the vaccine has blocked about 90% of 4 genotypes (HPV 6, 11,

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81 16 and 18) of HPV. These outstanding results indicate that none of the vaccine recipients developed cervical cancer, precancerous lesions or genital wart related to the 4 genotypes mentioned (Johnson, 2005). Tracking the effectiveness of the HPV vaccine over time as well as compliance of individuals to get a 3-year booster could be future nursing research. Additionally, the HPV vaccine will help reduce many of the emotional and physical problems seen in this research but new problems are on the horizon related to when to start the vaccine, who will get it, whether there be a compliance problem with the three year boosters, and parental concerns of vaccinating their child against an STD when in fact they may be in denial that their child may be sexually active. Once the vaccine is presented to the public I envision multiple longitudinal studies on its effects over time will be needed. Another area for future research is the investigation into the possibility of mother to child transmission of HPV in-utero. Although there were only 15 participants in this study, three of the women had been diagnosed with abnormal Paps indicating severe cervical dysplasia with precancerous lesions (CIN3). All three had a fairly low number of partners before first diagnosis of HPV. In fact, two of the women were diagnosed with CIN 3 on their first Pap smear, which was within one year of first coitus and each only had one partner. This is a little suspicious as usually CIN 3, displaying precancerous cells on the cervix occurs after being exposed for a number of years, as previously mentioned (CDC, 2002; Saslow et al., 2002; Weber & Leone, 2005). Two of these women had mothers that had HPV and the other woman was unsure of her mothers history as she had lived with her grandmother. Future research may shed light on the passage of HPV

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82 from mother to daughter, although currently much of the research indicates that there is a very low transmission from mother to baby during the birth process (Genuis & Genuis, 2003). Even with the introduction of the HPV vaccine, there maybe indications for future research on various ways to pass the cancerous genotype on to unsuspecting offspring. An interesting possibility for this researcher would be to investigate the possible transmission of HPV in-utero via the placenta or genetically. Summary The goal of this study was to grasp the true meaning or essence of the experience of living with HPV. The essence of having HPV was uncovered by recounting the feelings upon learning of the diagnosis; noting changes over time in personal growth; the experience of disclosing the diagnosis to others and what these experiences meant and the fears related to telling others. Further enlightenment came from discovery of what each woman did about the experience, the transformation and changing behavior after learning the diagnosis, and the willingness to share these lived experiences with others with the hope of helping other women deal with the disease. A significant finding throughout this work is that women who have been diagnosed with HPV have the ability to grasp the illness, process the physiological, psychological and social aspects that all come with the diagnosis, and go through some form of self-transformation in order to become self again thus leading to a new life, what ever that means individually. Self-transformation is essential in this quest to become the new self. Additionally a true partnership is needed between the HPV infected individual and the health care practitioner. Improved communication between health care providers and their clients with HPV would better support womens efforts to cope with this diagnosis.

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APPENDIX A ADVERTISEMENT FLYER AND NEWSPAPER AD

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Women participants wanted for research involving lived experience with Human Papillomavirus (HPV): *Women must be 18 years of age or older *Women must be diagnosed with HPV more than 1 year For more information contact: Susan Porterfield: Phone: 850-385-5343 Cell: 850-459-7778 **This health care facility is not sponsoring this research 84

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APPENDIX B DEMOGRAPHIC AND INTERVIEW GUIDE

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Demographic and Interview Guide Demographics: -Age____ Ethnicity________________ -Marital/Relationship Status_______________; Children_________ -Type of employment________________ -Education (number of years and degrees)____________________________ -When did you first get diagnosed with HPV?__________ -What type of treatments if any have you had?_________________________ -Current health status?____________________________________________ Interview Guide for the lived experience of HPV in women I am doing a research study on womens experience of living with HPV from when they were diagnosed to the present time. 1. Tell me about yourself and your experience with HPV? 2. What happened when you were told you had HPV? 3. How did you feel -Did this have any affect on your relationships? 4. Has having HPV changed your life? Could you please explain how? 5. What things or actions have been most helpful to you during this experience with HPV? 6. If you could change anything about what has happened, differently what would it be? 7. Do you have any advice for other women? 86

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APPENDIX C INFORMED CONSENT INDIVIDUAL INTERVIEWS

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Informed Consent Individual Interviews Protocol Title: Womens Lived Experience with Human Papillomavirus Please read this consent document carefully before you decide to participate in this study. Purpose of the research study: The purpose of this study is to learn more about your life experiences of living with HPV/genital warts. Having HPV has become a common problem and there is little known about how to help women deal with this problem. What you will be asked to do in this study: You will be invited to participate in this study if you are a woman 18 years of age or older and have been told that you have HPV or genital warts more than one year ago. If you choose to be in this study, you will be asked questions about your life experiences of having HPV including: what happened when you were told you had HPV; what effect, if any, has having HPV had on your relationships; has your life changed since being diagnosed with HPV; and was there anything special that happened that helped you with your experience with HPV. You will be asked not to use any names of health care providers or institutions during the interview. The primary investigator, Susan Porterfield, will audiotape interviews. You will be asked to take part in two interviews about 2 weeks apart. Time required: Each interview will take approximately 1 to 2 hours. Risks and Benefits: There are no direct benefits for being in this study; however information you provide may help other women deal with their diagnosis in a positive manner. Additionally, health care providers may benefit from the information shared by being better able to manage other women who develop the same problem. Compensation: There will be no monetary compensation for participation in this study, however a copy of Gift from the Sea by Anne Morrow Lindbergh will be given as a thank you gift for taking part in this study. Confidentiality: Your confidentiality will be protected to the extent provided by law. Your name will not be used. You will be assigned an identifying number or code name, which will be used on all tapes and written reports of the interview. Tapes and written reports will be kept in a locked file cabinet in Susan Porterfields university office. All tapes of interviews will be 88

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89 destroyed in accordance to the University of Florida policy at the completion of this study. If Ms. Porterfield publishes or presents at scientific meetings or in scientific publications, no identifying information will be used. Voluntary participation: Being in this study is completely voluntary. There is no penalty for not participating. Right to withdraw from the study: You have the right to withdraw from the study at anytime. Whom to contact if you have questions about the study: Susan Porterfield, PhDc, ARNP 1813 Wales Dr. Tallahassee, FL 32303 Telephone: 850-385-5343; cell: 850-459-7778 Fax: 850-385-5343 (with prior notification); email: suearnp@yahoo.com Whom to contact about your rights as a research participant in the study: UFIRB Office, Box 112250, University of Florida, Gainesville, FL 32611-2250; Telephone (352) 392-0433 Agreement: First Interview: I have read the procedure described above. I voluntarily agree to participate in the procedure and I have received a copy of this description. Participant: ___________________________________Date: _______________ Principal Investigator: __________________________Date: _______________ Second Interview: Participant: ___________________________________Date: ________________ Principal Investigator: __________________________Date: _______________

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95 Rose, P., Beeby, J., & Parker, D. (1995). Academic riguour in the lived experience of researchers using phenomenological methods in nursing. Journal of Advanced Nursing, 21, 1123-1129 Sanders, G. & Taira, A. (2003). Cost-effectiveness of a potential vaccine for human Papillomavirus. Emerging Infectious Disease, 9. Retrieved May 7, 2003, from http://www.medscape.com/viewarticle/447912_print Sartre, J. (1965). What is literature? (B. Frechtman, Trans). Harper & Row: New York. Saslow, D., Runowicz, C., Solomon, D., Moscicki, A., Smith, R. Eyre, H., & Cohen, C. (2002). American cancer society guideline for the early detection of cervical neoplasia and cancer. CA A Cancer Journal for Clinicians,52, 342-362. Smith-McCune, K (2002). Report from the Biennial Meeting of the American Society for colposcopy and cervical pathology, 2002. Medscape Womens Health. Retrieved September 14, 2002, from http://www.medscape.com/viewarticle/432448 Strauss, A. & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage. Stoler, M. (2005). The impact of human papillomavirus biology on the clinical practice of cervical pathology. Pathology Case Reviews, 10, 119-127. Sullivan, B. & Lacy, A. (2001). Shamea mark of sexual abuse. Kansas Nurse, 76, 1-2. Taylor, B. (2001) HIV, stigma and health: integration of theoretical concepts and the lived experiences of individuals. Journal of Advanced Nursing, 35 (5),. 792-798. Tenti, P., Zappatore, R., Miglipora, P., Spinillo, A., Belloni, C., & Carnevali, L. (1999). Perinatal transmission of human papillomavirus from gravidas with latent infections. Obstetrics and Gynecology, 93, 475-479. Tseng, C.J., Liang, C.C., Soong, Y.K., & Pao, C.C., (1998). Perinatal transmission of human papillomavirus in infants: relationship between infection rate and mode of delivery. Obstetrics and Gynecology, 91, 92-96. United Nations AIDS/World Health Organization (UNAIDS/WHO) (2003). AIDS EpidemicUupdate. Retrieved February 9, 2004, from http://www.unaids.org United States Census Bureau (2000). Florida Quick Facts. Retrieved March 15, 2004, from http://quickfacts,census.gov/gfd/states/12000.html United States Department of Health and Human Services, (1999). Prevention of Genital HPV Infection and Sequelae: Report of an External Consultants Meeting. Division of STD Prevention. Atlanta, Georgia: Author.

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96 Van Manen, M. (1990). Researching lived experience: Human science for an action sensitive pedagogy. New York: State University of New York Press. Vezina, C. & Steben M. (2001). Psychosexual impacts of human papillomavirus. The Canadian Journal of CME, 6, 139-152. Vuokila-Oikkonen, P., Janhonen, S., & Nikkonen, M. (2002). Patient initiatives in psychiatric care concerning shame in the discussion in co-operative team meeting. Journal of Psychiatric and Mental Health Nursing, 9, 23-32. Weber, D. & Leone, P. (2005). Understanding human papillomavirus. Consultant, 45 (Suppl. 3), S6-S15. Wiener, J.S. & Walter, P.J. (1995). Human papillomavirus I: Biology and role in cervical and penile malignancy. Infection virology. Retrieved January 23, 2000 from http://www.medscape.com/scp/iiu/1995/v08.n05/u403.walther. Wilcke, M.M. (2002). Hermeneutic phenomenology as a research method in social work. Currents: New Scholarship in the Human Services, 1(1). Retrieved March 11, 2003, from http://fsw.uncalgary.ca/currents/margaretha_wilcke/wilcke.htm World Cancer Research Fund/American Institute for Cancer Research (1997). Food, nutrition and the prevention of cancer: A global perspective. Washington, DC: American Institute for Cancer Research. World Bank (1999). Intensifying action against HIV/AIDS in Africa: Responding to a development crisis. Retrieved September 2, 2004, from http://www.worldbank.org/afr/aids

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BIOGRAPHICAL SKETCH Susan Padham Porterfield was born in Littleton, New Hampshire, on September 16, 1950, to Helen and Errol Padham. She has a Bachelor of Arts in industrial arts and physical education with a secondary teaching certificate from Western State College, Gunnison, Colorado; Master of Science of human resource management and development from Chapman University, Orange, California; a Bachelor of Science of Nursing from Minot State University, Minot, North Dakota; and a Master of Science of Nursing from Florida State University, Tallahassee, Florida. She is a retired United States Air Force Officer. She is a member of Sigma Theta Tau International, American Academy of Nurse Practitioner, Council of Advance Practice Nurses, and Florida Nurses Association. Currently she is an Associate Professor at the School of Nursing, Florida State University, where she teaches undergraduate and graduate nursing students. Additionally, she works in rural Florida as a Family Nurse Practitioner. She has three grown children, Rob, Josh, and Timberly and seven grandchildren. 97


Permanent Link: http://ufdc.ufl.edu/UFE0011300/00001

Material Information

Title: Women's lived experience with human papillomavirus
Physical Description: viii, 97 p.
Language: English
Creator: Porterfield, Susan Padham ( Dissertant )
Simpson, Sharleen H. ( Thesis advisor )
Lauterbach, Selen ( Reviewer )
Spring, Anita ( Reviewer )
Seymour, Sandy ( Reviewer )
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2005
Copyright Date: 2005

Subjects

Subjects / Keywords: Nursing thesis, Ph. D.   ( local )
Dissertations, Academic -- UF -- Nursing   ( local )

Notes

Abstract: The purpose of this study was to provide insight and understanding into women s lived experience after diagnosis with human papillomavirus (HPV). Understanding this experience is important because of the prevalence of HPV and the ambiguous course the infection takes later in life. Estimates indicate that 75% of the sexually active population in the United States have an HPV infection or have been exposed. Current research reports that 90% of cervical cancer tissue has HPV present, and cervical cancer is the second leading cancer for women worldwide. This infection has physical, emotional, and psychological ramifications that in many cases cannot be measured. This study looked at fifteen women 20 to 55 years of age, who had been diagnosed with HPV for more than one year. Hermeneutical phenomenology guided the inquiry. Five thematic groupings were identified: 1) the feelings embedded in the experience of having HPV; 2) the experience and fear of telling others; 3) finding out about the diagnosis and doing something about it; 4) transformation and behavior change which allow women to cope with the diagnosis; and 5) sharing the experiences with others. Concerns voiced by the women included how to cope with the idea of having a sexually transmitted disease (STD), and how to prevent the possible transmission to a partner or a future husband. Also of concern was the possible transmission to an offspring, and the uncertainty about their ability to bear children. The stigma of having an STD created a paradigm shift in the women s values and altered perceptions of self. Many made comments like, people like me do not get STDs. This study illuminated the transformation these women went through from diagnosis to coping with HPV. This self-transformation involved each woman coming to terms with having HPV and dealing with it in her way. The overall inadequate support received from health care providers was a major finding as well. Women felt they needed more information, education, and compassion from health care providers. The experiences of these women also suggest that health care providers need additional education about effective counseling and treatment strategies for HPV.
Subject: cancer, HPV, STD
General Note: Title from title page of source document.
General Note: Document formatted into pages; contains 105 pages.
General Note: Includes vita.
Thesis: Thesis (Ph. D.)--University of Florida, 2005.
Bibliography: Includes bibliographical references.
General Note: Text (Electronic thesis) in PDF format.

Record Information

Source Institution: University of Florida
Holding Location: University of Florida
Rights Management: All rights reserved by the source institution and holding location.
System ID: UFE0011300:00001

Permanent Link: http://ufdc.ufl.edu/UFE0011300/00001

Material Information

Title: Women's lived experience with human papillomavirus
Physical Description: viii, 97 p.
Language: English
Creator: Porterfield, Susan Padham ( Dissertant )
Simpson, Sharleen H. ( Thesis advisor )
Lauterbach, Selen ( Reviewer )
Spring, Anita ( Reviewer )
Seymour, Sandy ( Reviewer )
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2005
Copyright Date: 2005

Subjects

Subjects / Keywords: Nursing thesis, Ph. D.   ( local )
Dissertations, Academic -- UF -- Nursing   ( local )

Notes

Abstract: The purpose of this study was to provide insight and understanding into women s lived experience after diagnosis with human papillomavirus (HPV). Understanding this experience is important because of the prevalence of HPV and the ambiguous course the infection takes later in life. Estimates indicate that 75% of the sexually active population in the United States have an HPV infection or have been exposed. Current research reports that 90% of cervical cancer tissue has HPV present, and cervical cancer is the second leading cancer for women worldwide. This infection has physical, emotional, and psychological ramifications that in many cases cannot be measured. This study looked at fifteen women 20 to 55 years of age, who had been diagnosed with HPV for more than one year. Hermeneutical phenomenology guided the inquiry. Five thematic groupings were identified: 1) the feelings embedded in the experience of having HPV; 2) the experience and fear of telling others; 3) finding out about the diagnosis and doing something about it; 4) transformation and behavior change which allow women to cope with the diagnosis; and 5) sharing the experiences with others. Concerns voiced by the women included how to cope with the idea of having a sexually transmitted disease (STD), and how to prevent the possible transmission to a partner or a future husband. Also of concern was the possible transmission to an offspring, and the uncertainty about their ability to bear children. The stigma of having an STD created a paradigm shift in the women s values and altered perceptions of self. Many made comments like, people like me do not get STDs. This study illuminated the transformation these women went through from diagnosis to coping with HPV. This self-transformation involved each woman coming to terms with having HPV and dealing with it in her way. The overall inadequate support received from health care providers was a major finding as well. Women felt they needed more information, education, and compassion from health care providers. The experiences of these women also suggest that health care providers need additional education about effective counseling and treatment strategies for HPV.
Subject: cancer, HPV, STD
General Note: Title from title page of source document.
General Note: Document formatted into pages; contains 105 pages.
General Note: Includes vita.
Thesis: Thesis (Ph. D.)--University of Florida, 2005.
Bibliography: Includes bibliographical references.
General Note: Text (Electronic thesis) in PDF format.

Record Information

Source Institution: University of Florida
Holding Location: University of Florida
Rights Management: All rights reserved by the source institution and holding location.
System ID: UFE0011300:00001


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WOMEN' S LIVED EXPERIENCE WITH HUMAN PAPILLOMAVIRUS


By

SUSAN PADHAM PORTERFIELD





















A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA


2005

















ACKNOWLEDGMENTS

This completed work symbolizes a life long dream of getting my PhD. I have

always set my sights on accomplishing this difficult task not for the sake of doing it but

for the sake of learning and experiencing new and different things. This experience

epitomizes these endeavors and I am proud to acknowledge that I have learned so much

that I know that learning will continue to be a part of my life. This walk has not been

without a great deal of help from my committee members and mentors. My committee

members who advised and assisted in this effort were Dr. Sharleen Simpson, Dr. Selen

Lauterbach, Dr. Anita Spring, and Dr. Sandy Seymour. Special thanks go to Dr. Simpson

and Dr. Lauterbach. Dr. Simpson tried to discourage me from going down the qualitative

path but I knew it was the only way to get to the real answer of wanting to know what

women really experience when they are diagnosed with HPV. She has guided me in

every step of the way to make sure I did not become one of the "all but dissertation"

statistics. Dr. Lauterbach is a true phenomenologist. Little did I know when I asked her to

teach me about phenomenology that I would be thinking like one at the end of all this.

My family, friends, students, and co-workers deserve applause for tolerating my

ramblings about HPV. My daughter, Timberly, especially deserves a badge for listening

to my ranting and raving when my committee decided I needed more subjects. My

heartfelt thanks go to the women who allowed me into their lives, but only for a moment,









to feel what they feel everyday and I hope I will be able to make the life of others that

have HPVjust a little better. I am very grateful to everyone for allowing this to happen

and thankful to God for being in my life during all events, both good and not so good.















TABLE OF CONTENTS
page

A C K N O W L E D G M E N T S .................................................................................................. ii

LIST OF FIGURES ................................................ vi

A B S T R A C T ...................................................................................................................... v ii

CHAPTER

1 IN T R O D U C T IO N ........... .. ....................................... .......................... .. ............ 1

P athophysiology of H PV ...................................................................... .............. 2
Prevalence and Knowledge of HPV ...................................................................... 3
T h eoretical Issu es ............... ......................... .............................................. 7
P philosophical R oots .... ... ....................................... ....................... . .......... 7
H historical R o ots ............................................................................................ 8
Hermeneutic Phenomenology ...................................................................... 10

2 REVIEW OF LITERATURE ............................................................................... 12

Testing to Diagnose the Presence of HPV........................................................... 13
L in k to C an cer ........................................................................................................... 16
Coinfection of HPV and HIV ........................................................................... 18
Stigma of a Sexually Transmitted Infection........................................................ 20
Potential for Vertical Transmission from Mother to Child ................................. 21
Future HPV Vaccine ....................................... .......................... .............. 22
P potential P sychosocial Issues ...................................... ....................... .............. 23
S u m m a ry ................................................................................................................ .. 2 4

3 M E T H O D O L O G Y ...................................................................... ...... .............. 26

R research A pproach/D esign ....................................... ......................... .............. 26
Value of the Method for the Question .............................................................. 31
R research D esig n ........................................................................................................ 32
S ettin g /S am p le .................................................................................................... 3 2
Data Collection ......................... .... ......... ......... ............ .. 33
D ata A n aly sis...................................................................................................... 3 4
Phenom enological W writing .................................... ...................... .............. 36
R research R ig or ................................................................................................... 3 6
S u m m a ry ................................................................................................................. ... 3 8



iv









4 F IN D IN G S .................................................................................................................. 4 0

D descriptions of Participants.................................... ......................... .............. 41
Cultural Sensitivity ................................... .......................... .. 42
Them atic G roupings ................................................... .... ... ................................ .... ........... 45
Feelings Embedded in the Experience of Having HPV ..................................... 45
Feelings upon learning of the diagnosis...................................................... 46
D irty and contam inated ................................... ..................... .............. 49
Feelings of guilt........................................... 51
Feelings as they changed over tim e......................................... .............. 52
Experiences and Fears Related to Telling Others......................................... 54
Fears related to the change in self, future, and meaning ............................. 56
Fears related to sharing with family, losing face, and respect ................. 57
Partner acceptance with strings attached ............................................... 58
Finding Out and Doing Something About It................................................ 59
Transform ation and Changed Behavior.......................................... .............. 62
Self-transform ation ....................................... ..................... ........ ....... ....... 62
Greater awareness of consequences of behavior................................... 66
Sharing Experiences with Others ................................................. 69
S u m m a ry ................................................................................................................ .. 7 0

5 D ISCU SSIO N ............................................................................ ....................... 73

Stigm a of H having H PV ... ................................................................. .............. 74
Self Transform action ......................................................... .. ........... ..... 75
New Guidelines/policy for Pap Smears.................................................. 75
Implications for Nursing Research and Education.............................................. 78
F u tu re R e search ......................................................................................................... 8 0
S u m m a ry ................................................................................................................. ... 8 2

APPENDIX

A ADVERTISEMENT FLYER AND NEWSPAPER AD............................................ 83

B DEMOGRAPHIC AND INTERVIEW GUIDE......................................................... 85

C INFORMED CONSENT INDIVIDUAL INTERVIEWS.......................................... 87

R E F E R E N C E S ........................................................................................ .................... 9 0

BIO GR APH ICAL SK ETCH .. ................................................................... .............. 97










v
















LIST OF FIGURES

Figure page

1. Van M anen's M ethod of Phenom enology ............................................... .............. 27

2. M unhall's M odel of Existential Investigation .......................................... .............. 31
















Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy

WOMEN' S LIVED EXPERIENCE WITH HUMAN PAPILLOMAVIRUS


By

Susan Padham Porterfield

August 2005

Chair: Sharleen Simpson
Major Department: Nursing

The purpose of this study was to provide insight and understanding into women's

lived experience after diagnosis with human papillomavirus (HPV). Understanding this

experience is important because of the prevalence of HPV and the ambiguous course the

infection takes later in life. Estimates indicate that 75% of the sexually active population

in the United States have an HPV infection or have been exposed. Current research

reports that 90% of cervical cancer tissue has HPV present, and cervical cancer is the

second leading cancer for women worldwide.

This infection has physical, emotional, and psychological ramifications that in

many cases cannot be measured. This study looked at fifteen women 20 to 55 years of

age, who had been diagnosed with HPV for more than one year. Hermeneutical

phenomenology guided the inquiry. Five thematic groupings were identified: 1) the

feelings embedded in the experience of having HPV; 2) the experience and fear of telling

others; 3) finding out about the diagnosis and doing something about it; 4) transformation









and behavior change which allow women to cope with the diagnosis; and 5) sharing the

experiences with others. Concerns voiced by the women included how to cope with the

idea of having a sexually transmitted disease (STD), and how to prevent the possible

transmission to a partner or a future husband. Also of concern was the possible

transmission to an offspring, and the uncertainty about their ability to bear children. The

stigma of having an STD created a paradigm shift in the women's values and altered

perceptions of self. Many made comments like, "people like me do not get STDs." This

study illuminated the transformation these women went through from diagnosis to coping

with HPV. This self-transformation involved each woman coming to terms with having

HPV and dealing with it in her way. The overall inadequate support received from health

care providers was a major finding as well. Women felt they needed more information,

education, and compassion from health care providers. The experiences of these women

also suggest that health care providers need additional education about effective

counseling and treatment strategies for HPV.















CHAPTER 1
INTRODUCTION

Human papillomavirus (HPV) has been around for over 2000 years and is more

commonly known as genital or anal warts. Human papillomavirus specifically affects the

epithelial sites throughout the body and can be symptomatic, with visible lesions or

hidden within the cell DNA. There are over 100 different types and subtypes of HPV

which were considered benign infections until the 1970s when recombinant

deoxyribonucleic acid (DNA) technology made it possible to explore cell DNA and

revealed a link to cancer (Hagensee, 1999; Parmer, Basiliere, & Orenbery, 1997; Weber

& Leone, 2005; Wiener & Walther, 1995).

Human papillomavirus is the cause of genital warts and is one of the most common

sexually transmitted diseases (STDs). (The older term STD will be used throughout this

paper rather than the newer term, a sexually transmitted infection (STI) since it is

recognized by most people.) Herpes simplex virus (HSV) is number one, and HPV is

ranked second (Weber & Leone, 2005). In 1966, there were estimated to be 169,000

cases in the U.S. (Boyd, 1998); now estimates indicate that over 20 million Americans

are infected with HPV, and the frequency is rising (Weber & Leone, 2005). The

American Social Health Association (ASHA) estimates that there are 5.5 million new

infections occurring yearly in the United States (ASHA, 2001; CDC, 2002; Weber &

Leone, 2005). The true picture of the prevalence of HPV infections is hard to pinpoint









because HPV is not a reportable disease, and most infections are asymptomatic. It is

necessary to discuss the pathophysiology of HPV to grasp the complexity of this virus.

Pathophysiology of HPV

Most of the papillomaviruses have a specific cellular expression for squamous

epithelial cells. Human papillomavirus (HPV) can lie dormant in the epithelial cells until

activated. Human papillomavirus is a small, circular, nonenveloped, double-stranded

DNA virus that infects epithelial cells and can cause hyperproliferation of these cells.

There are two oncogenes, viral protein products (E6 and E7) and a protein that suppress

the expression of the oncogenes, bcl-2/E-2 (Fields, Knipe, & Howley, 1996; Harper,

2004; Kom, 1996; World Cancer Research Fund, 1997).

E6 and E7 viral proteins bind to the p53 and Rb proteins that are growth-regulatory

proteins, which inhibit cell-cycle progression. Due to the inhibition of the cell-cycle

growth, HPV oncogenicity seems to be related to a mutation or inactivation of host p53;

thus a mutation occurs rather than binding to HPV E6. Inactivation of p53 also results in

suppression of bcl-2 expression, a protein that inhibits programmed cell death (Fields,

Knipe, & Howley, 1996; World Cancer Research Fund, 1997). There are at least three

variants of HPV infection: episomal or nonreplicating, episonam or replicating, and

integrated. Episomal is an indication that the virus may exist as an inactive

extrachromosomal particle (episomal), which manifests as a subclinical or DNA-only

type infection. This is common, is associated with low viral copy numbers, usually no

cytological abnormalities, and 50% of sexually active young women have this present

(Harper, 2004). The second type, replicating infection, transcribes viral DNA and viral

particles are made. This type of infection is detected either via abnormal Pap smear or

visible genital warts and can be from low- or high-risk HPV. This variant results in a









cervical intraepithelial neoplasia (CIN) 1 indication on the Pap smear. The third HPV

infection occurs in a minority of cases in which the viral DNA transforms the host cell

DNA. The circular HPV episome breaks into a linear strand prior to integration into host

DNA. This occurs with high-risk types of HPV DNA that produce the bcl-2/E-2. The E-2

in an uninfected cell controls cell-proliferation-inducing genes E-6 and E-7. "E" stands

for "early" and the numbers are codes for early proteins that affect HPV gene regulation

and cell transformation (Weber & Leone 2005). If E-2 is absent then the cell grows

without controls, which in turn can produce a neoplasm or a CIN 2/3 (Harper, 2004;

Korn, 1996). HPV-6 and HPV-11 are considered low-risk genotypes and HPV-16, HPV-

18, and HPVs 31 and 45 are classified as high-risk. HPV-16 accounts for 50-60% of

cervical cancer; HPV-18 is involved in 10-12%; and HPVs 31 and 45 are involved in

about 4-5% of cervical cancers (Anhang, Goodman, & Goldie, 2004; Weber & Leone,

2004). There are many variables that factor into the manifestation and prevalence of

HPV, which cause conflicting clinical actions.

Prevalence and Knowledge of HPV

A study (Weber & Leone, 2005) conducted in a gynecologic clinic of 4000 women

ages 18 to 40 indicated a high prevalence of HPV but no symptoms or other indications

of the disease. Forty percent of the women participants harbored HPV without having any

history of high-grade cervical disease. Of the 40%, 27% had low-risk HPV types, 15%

had high-risk HPV types, and 13% were uncharacterized. This study indicates that even

in an everyday practice setting, HPV is an imposing problem. Additionally, indications

are that tracking HPV may be impossible due to the long latency period between

exposure and overt infection, which makes it difficult for individuals to know when they

have been exposed to the virus (Koutsky, 1997).









The Young Women's Health Study conducted at a Planned Parenthood clinic in

southern Arizona from 1996 to 2000 revealed a rate of new HPV infections at 2.9% per

month. This study also indicated that highest risk of cervical disease was among the

women with persistent HPV infection (Giuliano et al., 2002).

The asymptomatic nature of HPV hampers reliable estimates of numbers of

individuals infected. Individuals who have HPV may not be aware they have an infection

but can transmit the virus about 66% of the time. The sexual contacts of infected

individuals continue the cycle since they also may not know they have been infected

(CDC 2002; United States Department of Health and Human Services, 1999). Weber and

Leone (2005) state that the incidence of genital HPV in the United States looks like a

pyramid with visible genital warts at the top with 1% of infected people; subclinical

infections detected by colposcopy at 4%; 10% of subclinical infections detected by

DNA/RNA probes; and 60% of the population showing evidence only by checking for

antibodies for the base. The remaining 25% have no prior or current infection or

exposure.

Linked to the nebulous nature of HPV is a lack of knowledge about perceived risk

and attitudes about HPV. A study (Pitts & Clarke, 2002) conducted in the United

Kingdom examined women's knowledge of cervical screening, dysplasia, and HPV. The

sample population was female employees at a university in the North West of England.

The results indicated the women had a basic understanding about Pap screening and

colposcopy but their ability to grasp what HPV was and the related risk factors associated

was poor. Multiple studies (Biggers, 2000; Jay & Moscicki, 2000; NIH, 2003; Palefsky,

2002) indicate that individuals with human immunodeficiency virus (HIV) have an









increased risk of getting HPV. Human immunodeficiency virus is at epidemic proportions

worldwide. In the United States the greatest increase has been in women 18 to 24 years of

age, with the rates going from seven percent in 1985 to 25 percent in 2001. Women who

are HIV positive are twice as likely to have HPV as women who are HIV-negative;

additionally women who are immune-suppressed are ten times more likely to have HPV.

Immunosuppression induced by HIV is associated with multiple coinfections, particularly

those that are controlled by the cell-mediated arm of the immune system. Coinfection

with HIV and HPV is on the rise and presents a challenge, as the HIV-infected women

with HPV are more likely to develop squamous intraepithelial lesion of the cervix, and

thus are at greater risk of having cervical cancer.

Current research indicates that HPV is spreading without abatement due to the

nature of the infection, poor public knowledge about the infection, and the inability to

prevent reoccurrences even after a reasonable clearance time has occurred. Technology

has improved to the point that over 100 different genotypes of HPV have been identified.

While those genotypes with the highest cancer risk are known and persistent, technology

is still unable to cure or stop the infection (CDC, 2002; Hagensee, 1999; Parmer,

Basiliere, & Orenbery, 1997; Weber & Leone, 2005; Wiener & Walther, 1995). Further

qualitative studies about the course of this disease and women's experiences with it are

warranted due to the incurable nature of the disease, the unexplored psychosocial aspects

of this disease, and the possible risk to women and their babies.

Statement of Research Purpose

The purpose of this study is to gain a better understanding of what it means to live

with a diagnosis of HPV. No literature was found that explored the lived experience of









women diagnosed with HPV, and I think that there may be a variety of causes for this.

One reason little is written is because there are problems in pinpointing exactly who

contracts the virus, where it is contracted, and how to prevent it. In the past, HPV or

genital warts were considered an unsightly bother of vaginal or anal warts. However

with discovery of the strong link to cervical cancer, this once benign disease has become

deadly. In addition to the cancer scare, there is the emotional aspect of a person being

told she has HPV. Human papillomavirus is a sexually transmitted disease, which carries

issues of guilt and shame, and there is no way to prevent its spread to a partner other than

abstinence. Abstinence is not desirable for young women who expect to marry and have

children. For those women who plan to have children, there is the added element of

possible transmission of HPV to their child either in-vitro or during the birth process.

Another possible reason little has been written about the experience of having HPV

is that health care and the roles and status of women vary in different societies and

cultures; variation includes the rural-urban continuum and the level of development. The

cultural background of the women may indicate diversity in their experiences especially

regarding the stigma of STDs (Fortenberry et al., 2002). North Florida has a population

that is predominantly Caucasian and African American, both in the rural and urban areas.

The behaviors and attitudes related to STDs and HPV may be related to this background.

Learning about the evolving themes of women's experiences of living with HPV

may provide information that could help other women who find themselves in similar

situations to have more enriching quality of life. Counseling a woman who has just been

diagnosed with HPV is frustrating due to the lack of straightforward answers about

treatment and future ramifications. First, they are told they have an incurable virus that









can appear without warning; may not be detected other than through a Pap smear; can be

inconclusive at times; can be spread to their partner without any indication; and can cause

cervical cancer in 20-30 years if undetected. Then, when practitioners are asked how to

prevent spreading it, they must state that there is no preventable method except to refrain

from intercourse, since the use of condoms is not effective in prevention of the spread of

HPV (Bocchini, 2005). Additionally, the American College of Obstetricians and

Gynecologists (ACOG) recommends that the first Pap be done 3 years after the onset of

sexual activity commences or no later than age 21 (Bocchini, 2005). But these standards

change, promoting confusion for patient and practitioner. This study has identified a

number of themes of meaning from the ways that women have coped with this disease

and what they have learned from the process.

Theoretical Issues

Philosophical Roots

Hermeneutical phenomenology was selected as the best approach to explore the

lived experiences of women who have been diagnosed with HPV for more than one-year.

This framework provided the researcher with a full description of the experience by

looking at it through an interpretation of a woman's everyday experiences. This

methodology allows a description of how things appear, how they speak to the

interviewee, the researcher, and anyone trying to understand women's experiences. Van

Manen (1990) states that phenomenology gives a deeper understanding of everyday

experiences although the person must reflect on the lived experience retrospectively or

recollectively. This reflection may help in uncovering meanings, which are both explicit

and hidden.









In addition to Van Manen's view of phenomenology, Patricia Munhall's approach

(Munhall, 2001) to existential investigation of phenomena helped discover the essential

themes of meaning whether overt or hidden. Munhall's perspective of phenomenology is

not a philosophy, but a process or approach. Although she outlines seven processes in

phenomenological research, she states that immersion is the first step and a critical

beginning.

Historical Roots

Phenomenology has its roots in the human sciences with philosophers such as

Husserl, Heidegger, Gadamer, and Merleau-Ponty. Husserl looked at phenomenology as

a reasoned inquiry into the world of appearances, an attempt to glimpse the phenomenon

as an experience or a descriptive approach. He proposed that the researcher process the

information in a reductive fashion in which the core essence would be bracketed so it

could be studied objectively through explicit descriptions (Husserl, 1987; Wilcke, 2002).

Bracketing is an attempt by the researcher to eliminate prior knowledge or bias about a

phenomenon. Setting aside prior knowledge or interpretive influences about a

phenomenon allows a fresh impression about the phenomenon to be illuminated. This

approach suspends assumptions about the phenomenon (LeVasseur, 2003). Merleau-

Ponty looked at phenomenology as a study of "essences." According to him, the

"essence" is the nature of a thing, which makes something what it is. The

phenomenological description is a focus on human lived experience in the world. Husserl

referred to essences as the "whatness" of things instead of the "thatness" of things.

Essences are related to the true meaning of something (Husserl, 1987; Merleau-Ponty,

1962; Munhall, 2001; Van Manen, 1990).









One of Husserl's students, Martin Heidegger, introduced hermeneutics into the

phenomena study, which moved the lived experience into an interpretive turn rather than

purely descriptive. Heidegger believed that pure description only limited the revelation of

meaning in the lived experience (Heidegger, 1988; Van Manen, 1990). He felt that

individuals live their life by experiencing it. Further, the specific meaning attributed to

experiences that we put on life is hidden and requires interpretation to have a better

understanding of existence. Heidegger focused on uncovering the hidden phenomena and

emphasized the importance of an individual's preconceptions. Therefore, hermeneutic

phenomenology seeks to go beyond description in order to uncover the meanings that are

not so apparent.

Hermeneutics bridges the gap between what can be related to in the world, such as

life before the HPV diagnosis, and what is now different in our world, such as how our

lives have changed in order to continue on (Heidegger, 1988; Wilcke, 2002). This

philosophy allows the researcher to be sensitive to the subtle undertones of language in

conversation and to listen to the meaning (Van Manen, 1990).

Heidegger's student, Hans-Georg Gadamer, stressed the importance of language in

the research study. Words and their meanings are important in investigating human

experience as this gives a fuller and greater depth of understanding of the experience

encountered. Gadamer characterized hermeneutics by exploring the role of language, the

way in which questioning occurred in research, the conversations, and how the

significance of prejudice, history, and tradition impacted the human understanding

(Gadamer, 1999; Van Manen, 1990). Gadamer looks at language as the medium for

conversations. He notes that conversation has "a spirit of its own and that the language in









which it is conducted bears its own truth within it" (Gadamer, 1999, p. 383). A

conversation is a process individuals go through to gain understanding, thus the essence

of hermeneutics; in other words a theory and practice of interpretation. The goal for

hermeneutic phenomenology is to uncover and reveal the meaning of the lived experience

through a process of interpretation, rediscovery, and the analysis of linguistic meanings in

language (Gadamer, 1999; Van Manen 1990; Wilcke, 2002).

Hermeneutic Phenomenology

Hermeneutic phenomenology provides the researcher with both a philosophy and

method in which to explore phenomena or "facts" of the lived experience and interpret

meanings. Revealing this world is a search for the fullness of living. Van Manen says that

hermeneutic phenomenology is "an attempt to enrich lived experience by mining its

meaning" (1990, p.38). He also mentions that language and the ability to express oneself

to others is the only way to create a conversational relationship (Van Manen, 1990).

Sartre (1965, p. 18) said ". that the goal of literature is to reveal the world and

particularly to reveal man [sic] to other men [sic] so that the latter may assume full

responsibility before the object which has been thus laid bare." Munhall (2001) relates

how important language and conversation are in phenomenology as a social interaction.

Conversation in research includes listening, keeping silent, and hearing the unknowing,

thus allowing new ideas to take root within our beings. My aim is to search for the

fullness of living with HPV, to "mine its meaning" by seeing a woman's experiences

through her stories and through her own eyes.

Summary

Using hermeneutic phenomenology as the philosophical underpinning and strategy

for grasping the essences of women's lived experience with HPV has allowed research









into a relatively common human experience, which has not previously been explored.

There are numerous quantitative studies which address the link HPV has to cancer,

studies that identify the best method to diagnose HPV, and those that focus on the best

treatment protocols, but little has been done to explore how HPV affects women

holistically, personally, physically, emotionally, and psychologically. As mentioned

earlier in relation to therapy management, HPV carries multiple issues significant to all

women. Further the new information which may be developed by this study is relevant to

health care providers in their approach as they diagnose, treat, and counsel women.















CHAPTER 2
REVIEW OF LITERATURE

According to Laura Koutsky, a member of the HPV Research Group at the

University of Washington, 1% of the sexually active population, both male and female, in

the United States have genital warts with overt symptoms; 14% of the population has

subclinical HPV infection detected by colposcopy, cytology, or DNA/RNA probes; and

60% of this population had prior infection with probable antibodies to genital HPV

infection. These percentages suggest that 75% of the sexually active population has HPV

infection or has been exposed (CDC, 2002; Koutsky, 1997; Weber & Leone, 2005).

These numbers are staggering and give a sense of how difficult it can be to estimate

accurately the prevalence of HPV infection.

The research from a number of different studies documents the prevalence of HPV

and how difficult it is to track, which in turn makes it difficult to contain. One such study

(Evander et al., 1995) was a population-based cohort study done in Sweden indicating

that over a two-year period the diagnosis of HPV infection fluctuated among young

women. Of the 276 young women in the study, 80% experienced remission of their HPV

infection. Twenty-one percent of the individuals tested positive initially, and when

retested, only 8.3% indicated HPV infection. The study speculates that the high

frequency of HPV infection and the lower prevalence of HPV infection in women in their

late 20s and after age 30 can be the result of a host immune response against the virus









infection. The researchers noted that it was difficult to estimate the numbers of infected

individuals due to the way in which the "silent" infection, symptoms, and overt lesions

react in different individuals.

Natural History of HPV

Many cases (about 80%) of HPV regress without any intervention or indication of

infection (Saslow et al., 2002). This is due to body's immune response in eliminating the

virus from the body. Human papillomavirus infection starts with an exposure that takes

anywhere from 1 to 8 months to incubate. During this time there may not be any overt

indication of infected. After this incubation period lesions may start appearing and

rapidly multiply during the next three to six months. The host immune response is

activated and usually over another 3 to 6 months the body is able to contain the virus.

Most individuals sustain clinical remission but about 5% to 10% of individuals have

persistent or recurring disease. These individuals can be persistent carriers of HPV

(Weber & Leone, 2005). Additionally, spontaneous resolutions for genital warts and

cervical cell dysplasia occur without treatment in many cases because of the body's

immune response but this is also dependent on the grade of cervical cell abnormalities.

Sixty percent of the low grade infections resolve without treatments and of these only 1%

progresses to cancer. High grade infections resolve spontaneously in 30-40% of patients

and progress to cancer in 12% of the cases (Weber & Leone, 2005).

Testing to Diagnose the Presence of HPV

A Pap smear, which is a microscopic examination of cells scraped from the uterine

cervix, aids in the diagnosis of abnormal cells. There are two types of surface cells that

line the cervix passage, squamous cells in the vagina and columnar cells on the uterus.

The junction of these two cells is called the squamous/columnar junction and is referred









to as the transformation zone as the cells are in constant cell division, making this area

more vulnerable to cancer (Gant & Cunningham, 1993). Since its implementation in the

1950s, the cervical cytology screening has helped reduce cervical cancer rates

dramatically. There are a number of reporting systems for the Pap test, the Class System

I-V, the Cervical Intraepithelial Neoplasia (CIN) System, the Descriptive System, and the

Bethesda system. With in this research the term CIN is used as the participants described

the abnormal Pap smear results using CIN. Many times a Pap result will have all these

descriptors listed to help practitioners. The goal of Pap screening and follow-up

procedures is to prevent cervical cancer from going undetected. If the Pap smear shows

abnormal changes, it is classified and then recommendations for follow-up are

administered. The FDA has approved the use of liquid cytology, which replaces the

conventional Pap smear. This test significantly improves specimen quality as well as

improving readability for test interpretation. Due to having the specimen collected in a

liquid medium, half of the material is used for the Pap test and the remainder can be used,

if indicated, to test for HPV (Hawkins, Roberto-Nichols & Stanley-Haney, 1997; HPV in

Perspective, 1998; Linnehan, Andrews, & Groce, 1996; Manos et al., 1999; National

Cancer Institute, 2001; Smith-McCune, 2002). Annually, 50 million Pap tests are

performed and of those, 1.2 million indicate that CIN class 1 exists; CIN 2 and 3 consist

of 300,000 cases; and 14,000 cases indicate cervical cancer (Weber & Leone, 2005).

Recently, new guidelines have been published by The American Cancer Society

(ACS) for early detection of cervical neoplasia and cancer which were accepted by the

American College of Obstetricians and Gynecologists, the National Cancer Institute, the

American Medical Association, the American Academy of Family Physicians, the









American Medical Women's Association, and the American Nurses Association. The

changes to the previous 1987 guidelines included when to start screening, when to

discontinue screening, screening women who have had a hysterectomy, and screening

intervals and screening test (Saslow et al., 2002). The changes in the guidelines are: 1)

cervical cancer screening should begin three years after the start of vaginal intercourse, or

no later than 21 years of age; 2) cervical cancer screening may cease in women who are

70 or older with an intact cervix, who have had three consecutive documented normal

Pap smears, and no abnormal/positive cytology test within the past 10 years prior to age

70; 3) screening of women who have had a total hysterectomy for benign gynecologic

disease is not needed.; 4) screening interval after the initial screen using the conventional

Pap smear method will stay at annual intervals, but those that use liquid cytology smears

can extend the screening to every two years. Those women who have had three

consecutive normal smears at or after the age of 30 may also be screened every two or

three years. The use of liquid-based cytology allows extending the interval to two or three

years unless the women have a history of in utero diethylstilbestrol (DES), a female sex

hormone, exposure, are HIV positive, or immunocompromised (Saslow et al., 2002).

The rationale for not doing an initial Pap until three years after the start of vaginal

intercourse stems from the overdiagnosis of cervical lesion and the time it takes a high-

risk HPV to become carcinoma in situ or cancer. In a majority of the HPV cases the

lesions will spontaneously regress; therefore current interventions such as colposcopies

and loop electrosurgical excision procedure (LEEP) may ultimately do more harm than

good (Saslow et al., 2002).









Link to Cancer

Cervical cancer is the second most common cancer among women worldwide

(Weber & Leone, 2005). The main causal factor linked with cervical cancer is infectious

agents that are sexually transmitted such as HPV infection. HPV type 16 and 18 DNA is

found in 60-70% of high-grade precancerous lesions of the cervix. According to the

findings of the World Cancer Research Fund, known risk factors for cervical cancer that

are mediated by HPV include age at first intercourse, number of sexual partners, and

number of partner's sexual partners (World Cancer Research Fund, 1997). The

discrepancy between the 60-70% link, as mentioned above, and the 90% link between

cervical cancer specimens and the DNA in HPV is due to the other genotypes making up

the difference in percentage (Hagensee, 1999; Parmer, Basiliere, & Orenbery, 1997;

Stoler, 2005; Weber & Leone, 2005).

With the current dynamic technology of DNA testing with polymerase chain

reaction (PCR) techniques, the prevalence figures are on a steady rise (Hildesheim et al.,

1994; Weber & Leone, 2005). Sanders and Taira (2003) indicated that in the United

States alone approximately 13,000 new cases of cervical cancer will be diagnosed and of

these more than 4000 will die of the disease. Risk factors for cervical cancer and the

expression and acquisition HPV are many. Factors that open the door for acquisition of

HPV include the number of sexual partners and frequency of intercourse, exposures to

the HPV viruses by a sexual partner, and infection with other STDs. The expression of

HPV depends upon the immune defense state of the individual, which may be influenced

by having an inflammation of chlamydia or HSV-2, having diabetes, and being a smoker

(CDC, 2002; Diamond, Soddenm, & Goldberg, 1997; Weber & Leone, 2005).









Anal and cervical cancers are similar in their association with HPV. Palefsky

(2002) feels that the increase in anal cancer cases has the same estimated incidences that

cervical cancer had prior to the aggressive cervical cytology screening. He is also

concerned that the HIV infected population in both males and females has shown an

increase in anal cancer cases. As a general rule, it seems that an individual who is HIV

positive has an increased risk of having HPV and anal cancer.

Although this case-controlled study was done in 1993 (Hildesheim et al., 1994), the

information is still pertinent today. The study investigated the persistence of type-specific

human papillomavirus infection among cytologically normal women; the researchers

found that HPV infection is usually transient, and cervical cancer may arise from within

the subset of women with persistent HPV infection. Three hundred ninety three women

initially cytologically normal were tested for HPV using polymerase chain reaction-based

HPV testing. Over a 14-month period, the researchers found that HPV infection was a

transient phenomenon among young women <30 years old, and were not sure why this

happens. According to Weber and Leone (2005), the overt evidence of HPV may

disappear or go undetected over a period of months. Then, depending on the HPV

genotype, the virus seems to present itself and grow for several months, at which time the

host of the virus mounts an immune response and the virus is contained or in remission.

In women greater than 30 years of age, the researchers found HPV persistence was higher

and more prominent. This phenomenon may be due to the immune response of the older

women, which may be less effective in suppressing the virus. Another possibility is that

the women in their study, who were HPV-positive at enrollment, represent a skewed

subset of women who were originally infected with HPV at a young age. In addition,









women who were infected with HPV types that are linked with cervical cancer were more

likely to have persistent infection than those infected with other HPV types (Hildesheim

et al., 1994; Weber & Leone, 2005).

Coinfection of HPV and HIV

The numbers of people living with human immunodeficiency virus (HIV) and

acquired immune deficiency syndrome (AIDS) continue to increase worldwide,

particularly in several regions of the world such as Sub-Saharan Africa (SSA) and

Southern Africa registering the highest prevalence; and Asia, the Pacific, Eastern Europe,

and Central Asia expanding epidemics yearly (UNAIDS/WHO 2003). Globally (CDC,

2002) it is estimated that 40 million people are living with HIV/AIDS in 2003 compared

to 35 million in 2000. The daily HIV infection rate, globally, is 16,000 individual with

10,000 of these newly infected people being in Africa. In the United States, the number

of newly infected adult and adolescent women has more than tripled, from 7% in 1985 to

25% in 1999. New female HIV infections are estimated at 12,000 (in 2002), with 64%

being African American, 18% White and 18% Latino (Kaiser, 2003). The CDC estimates

that in the United States, 850,000 to 950,000 individuals are living with HIV, and another

360,000 living with AIDS. Twenty-one percent of the individuals living with AIDS are

women (Kaiser, 2003).

A study (Doctor's Guide, 1999) funded by the National Institutes of Health,

examining HIV infection and its complications in a large, diverse population of women,

reported that a higher HIV viral load and lower CD4 count were predictive of HPV

infection. The study involved 1,178 HIV-positive women and 500 high-risk HIV-

negative women. Women under 30 years of age were 1.75 times more likely to be

infected with HPV than women 40 and older. This study supports the view that increased









HPV disease among HIV-positive women results from reactivation of previously

acquired HPV rather than being initially infected with HPV recently. This reinforces the

importance of the main problem of detecting and treating HPV, the transient and latency

characteristic of the virus.

Another study (Palefsky, Holly, Ralston, DaCosta, & Greenblatt, 2001) looking at

the co-infection of HPV and HIV, reported that 76 percent of HIV-positive and 42

percent of high-risk HIV-negative women had anal HPV DNA. The aim of this study was

to outline a detailed analysis of anal HPV infection in HIV-positive and high-risk HIV-

negative women, and to characterize risk factors for HPV infections.

According to the World Bank (1995) changing the course of a disease may be the

only way either HIV or HPV cases will be reduced. The rates of HPV-related morbidity

are severely increased in HIV-infected women thus multiplying the personal and

economic cost. Even the economic foundations of many countries are being threatened by

the HIV/AIDS epidemic. In 1982, there was only one country in Africa that had an HIV

prevalence rate over 2 % of the population with HIV/AIDs, Uganda. Now there are 21

African countries that have greater than 7% prevalence rate. The HIV/AIDS epidemic is

not only the most important public health problem but it has devastating economic

ramifications for many countries (World Bank, 1999).

The HIV/AIDs epidemic is being researched by many, as the pandemic

ramifications are almost too overwhelming to understand. As with the HIV/AIDs

epidemic, the HPV epidemic is just as puzzling to resolve. The stigma of having

HIV/AIDs, a sexually transmitted disease, seems to be looked down upon universally.

The following section will look at the stigma of having an STD.









Stigma of a Sexually Transmitted Infection

The concept of shame carries feelings of guilt, punishment, self-reflection, and

retribution for some unspoken event that aids in devaluing an individual's self-worth and

self-esteem. Combining these feelings with having a life threatening, STD is

overwhelming. There have been a number of studies that look at HPV and HIV and the

relationship with stigma and shame. In particular, a study about gonorrhea and HIV

screening was conducted in seven U.S. states in 1998, as part of a Gonorrhea Community

Action Project (Fortenberry et al., 2002). The results indicated that STD related stigma

was associated with a decrease in seeking gonorrhea or HIV testing, thus creating a

barrier in containing further exposure.

According to Fortenberry et al. (2002), the Institute of Medicine (IOM) reported

that stigma is a key element in the "hidden epidemics" of STDs in the U.S. They defined

stigma as an attribute or label that sets a person apart from others and links them to

undesirable characteristics. Shame is defined as a negative emotion elicited when a

person experiences failure in personal or social standards, feels responsible for the

failure, and believes that the failure reflects self-inadequacy rather than inappropriate

behavior (Fortenberry et al., 2002). Farmer and Kleinman (1998) looked at the cross-

cultural comparison of the human suffering aspect of AIDS. Cultural values color

everything we do in life; including what role shame plays in living with an STD.

The stigma of HIV/AIDS in Africa has affected entire families within the

community. South Africans fear the public knowledge of their own family member's

HIV status, which will result in a loss of social standing and shame (Giarelli & Jacobs,

2003). This fear and shame prevents them from seeking help as they deny symptoms that

could, if addressed early enough, help prevent the spread of the infection as well as









promote quality life for individuals and families. As illustrated earlier, this is true in the

United States as well (Fortenberry et al., 2002).

Potential for Vertical Transmission from Mother to Child

Vertical transmission of HPV, from infected mothers to their newborn babies has

conflicting and disturbing possibilities. At the University of Kuopio, Finland, a

systematic study of children 0.3 to 11.6 years old born to mothers infected with genital

HPV were prospectively followed since 1981. The primary aim of the study was to find a

link between children and their mothers antenatally or perinatally. The results indicated

that mothers may transmit HPV to their children. Human papillomavirus was found in 31

of the 98 oral scrapings of the children born to mothers with a history of HPV or active

infection. Sixteen (51.6%) of these 31 children had the identical HPV type as their

mothers. The study mentions possible modes of transmission to include autoinoculation,

perinatal infection, infection in utero, casual social contact, and sexual abuse (Puranen,

Yliskoski, Saarikoski, Syrjanen, K., & Syrjanen, S., 1996).

In another study aimed at evaluating the risk of perinatal HPV transmission from

mothers with latent infections to the oropharyngeal mucosa of their infants, two key

elements during the delivery were critical factors in the transmission: rupture of the

amnion and delivery. The latent HPV infections had a low incidence of transmitting the

virus to the oropharyngeal mucosa of the infants. Human papillomavirus was detected in

11 neonates born vaginally to HPV-positive mothers, for a 31% vertical transmission. All

of these 11 neonates tested negative for nasopharyngeal HPV (Tenti et al., 1999).

Due to the small numbers of previous studies on perinatal transmission the Medical

College in Taipei, Taiwan, conducted a study of 301 pregnant women, 160 vaginal

deliveries and 141 cesarean deliveries. They did a buccal and genital swab of the









neonates born to HPV-mothers. There were 68 of the 301 neonates who were positive for

HPV and of these, 27 mothers transmitted HPV to their children. Eighteen (51%) of the

35 of mothers who had vaginal births transmitted HPV to their children while only nine

(27%) of 33 mothers who had cesarean sections transmitted HPV to their children. The

researchers concluded that neonates were at higher risk for exposure of HPV after a

vaginal delivery than cesarean delivery (Tseng, Liang, Soong, & Pao, 1989).

Future HPV Vaccine

The best approach to combat cervical cancer and maybe the only way to curb the

epidemic is the development of a vaccine to prevent and cure genital HPV. There are

several institutions, including Merck Research Laboratories, MedImmune Inc.,

GlaxoSmithKline, and the National Cancer Institute (NCI) that are developing and testing

prophylactic HPV vaccines (Sanders & Taira, 2003). There are 2 vaccines in clinical trial,

quadrivalent vaccines by Merck Laboratories, for HPV-16 and HPV-18 mainly

associated with certain types of cancer as well as HPV-6 and HPV-11 mainly associated

with anogenital warts; and the bivalent vaccine by GlaxoSmithKline. Phase III trials are

being conducted and the results are very promising. The Merck randomized double blind

trial indicated that a human papillomavirus (HPV-16) vaccine had 100% efficacy in

protecting women not previously exposed. This study enrolled 2,392 women aged 16 to

23 years of age (Barclay, 2002; Koutsky, 2002; Bocchini, 2005).

GlaxoSmithKline (Bocchini, 2005) bivalent vaccine for HPV 16/18 in women has

completed Phase II clinical trails resulting in an 82% efficacy rate in reducing the number

of incidents of type 16 and 18 HPV infections. Additionally it prevented cervical changes

in approximately 91-95% of women with atypical squamous cells of undetermined

significance (ASCUS).









When the vaccine is approved by the FDA there are many unanswered questions

that need to be addressed such as: when to start the vaccine; in what population, should it

be used just for women or for men too; and what will be the long term efficacy? To

prevent being infected with HPV, an individual must be vaccinated well before potential

exposure, which means it is indicated around 9 and 10 years of age. This raises many

sensitive issues. Thus, there are many factors that need to be addressed after the approval

but this vaccine may very well be the only way to slow down the HPV epidemic.

Potential Psychosocial Issues

In a study conducted in Manchester, England, significant concern by the

participants about attitudes toward HPV testing was illuminated. A total of 71 women

ranging from age 20-59, were involved in eight focus groups discussing basic

information about cervical cancer and screening. Core questions explored attitudes

toward HPV; reactions to HPV as sexually transmitted disease linked to cervical cancer;

reactions to testing positive for HPV; and partner, family, and community attitudes to

HPV testing. The research results indicated anxiety, confusion, and stigma about HPV as

a sexually transmitted infection. People thought that more information about HPV was

needed for individual and public education. In addition, the researchers were concerned

that HPV testing results had the potential to cause psychosocial harm to women, their

partners and their families (McCaffery et al., 2002)

Linnehan and Groce (2000) conducted a quantitative study on counseling and

educational interventions for women with HPV. The research indicated that a diagnosis

of HPV had physical issues as well as psychosocial sequelae. Of the 454 participants, a

high percentage reported psychosocial sequelae such as anger, depression, isolation,

shame, and or guilt. The females of the study reported significantly more feelings of









depression and shame. Shame is an internal "meter" that affects the individual's entire

outlook, values, and actions (Hahn, 2000; Meerabeau, 1999; Sullivan & Lacy, 2001). The

concept of shame is mentioned in anecdotal information from women encountered in my

clinical practice. One woman stated that she felt dirty and ashamed; so much so she was

unable to confide in her mother for guidance.

Summary

In summary, HPV infection is becoming a major threat to the future health of

sexually active individuals (Parmer, Basiliere, & Orenbery, 1997; Stoler, 2005; Wiener,

Walther, 1995; World Cancer Research Fund, 1997). Factors hindering efforts to control

the HPV epidemic include the fact that it is not a reportable STD, the latency period prior

to becoming symptomatic, the lack of knowledge of transmission, and the inability to

trace the infection source (Boyd, 1998; Hagensee, 1999; Koutsky, 2002; Montero,

Larkin, & Houston, 1997; United States Department of Health and Human Services,

1999). In addition to the factors already cited, the issue of possible vertical transmission

of HPV from mother to child is frightening since the research findings are unclear about

when this occurs. A positive development is that new technology has allowed early

detection of the virus that causes cervical cancer. An HPV vaccine is also in development

and has great promise but it does not address the problems of people who already are

living with HPV. Although HIV plays a major role in HPV research and is extremely

important, it will not be a part of this research. The stigma of having a sexually

transmitted disease within a specific society and culture could affect a woman's ability

and inclination to pursue treatment or disclosure of having HPV. Continued aggressive

monitoring and treatment is necessary to help stop this epidemic disease as well as,

address potential emotional battles with living with the diagnosis of HPV. This study






25


hopes to identify themes of meaning from the ways that women have coped with this

disease and what they have learned from the process.















CHAPTER 3
METHODOLOGY

Research Approach/Design

Using the hermeneutic phenomenological approach to the study of HPV involves

gaining access to women's experience in their world. The philosophical framework

underlying this method is an understanding of themes of phenomenology. "...Merleau-

Ponty states that phenomenology is accessible only through its method" (Merleau-Ponty,

1962; Munhall, 2001 p. 94). Van Manen's human science approach sees

phenomenological studies as lived structures of meaning. His model of phenomenology

uses eleven elements that are intended to increase one's thoughtfulness and ability to

capture the lived experience in a person's "text" of life. An overview of Van Manen's

approach is outlined in Figure 1. Steps 1 to 3 are a way to orient to the phenomenon of

living with HPV and expose any pre-conceived notions about the disease. The first step is

to orient to the phenomena. The second step is formulating the phenomenological

question, and the third step is to explicate assumptions and preunderstandings of any

personal bias and avoid drawing conclusions that do not reflect the woman's own

experiences. The next phase includes the fourth step that explores the phenomenon using

personal experiences, obtaining experiential descriptions as viewed by the study

participants, and seeing where this description fits in literature, the arts, or in life. This

step facilitates grasping a deeper understanding of the nature of the phenomena. The

purpose of this phenomenological reflection is to uncover themes from the woman's

experience and process them into essential themes of the research. Part of Van Manen's









method is to do the phenomenological writing, which includes many rewritings and

reflections. This conceptualization is credited to Sarah Lauterbach who used writing the


TURNING TO THE 1 Orienting to the phenomenon
NATURE OF LIVED 2. Formulating the phenomenological question
EXPERIENCES 3. Explicating assumptions and preunderstandings


THE EXISTENTIAL 4. Exploring the phenomenon: generating "data"
INVESTIGATION 4.1 Using personal experience
4.2 Tracing etymological sources
4.3 Searching idiomatic phrases
4.4 Obtaining experiential descriptions from
subj ects
4.5 Locating experiential descriptions in
literature, arts
5. Consulting phenomenological literature


PHENOMENOLOGICAL 6. Conducting thematic analysis
REFLECTIONS 6.1 Uncovering thematic aspects
6.2 Isolating thematic statements
6.3 Composing linguistic transformation
6.4 Gleaning thematic description from artistic
7. Determining essential themes


PHENOMENOLOGICAL
WRITING


8. Attending to the speaking in language
9. Varying the examples
10. Writing
11. Rewriting


Source: Adapted from Practicing Phenomenological Writing by M. Van Manen, 1984,
Phenomenology and Pedagogy, 2, 5 (as cited in Munhall, 2001, p. 115).
Figure 1. Van Manen's Method of Phenomenology.

phenomenological narrative; Van Manen's phenomenology in her research (Boyd, 2001).

This model is "textual reflection of the lived experience and practical actions of everyday

life with the intent to increase one's thoughtfulness and practical resourcefulness or tact"

(Boyd, 2001 p. 114). Carolyn Boyd's phenomenological methodology complements Van









Manen's model, and I feel that a melding of the two philosophies/methods will lend itself

nicely to my research.

Patricia Munhall sees phenomenological research as existential investigation. In a

broad definition existential investigation encompasses philosophical, religious, and

political ideologies. Existentialists believe the choices that individuals make are based on

their experiences, beliefs, and biases thus making them unique as individuals. The

existentialist is searching for self and defines herself by living (Olson, 1962). The

existentialist view of Munhall blends nicely with Van Manen's approach and was used as

a concurrent process in this research. Munhall (2001) sees phenomenological studies as a

means to expand consciousness to result in a better understanding of where meanings lie.

The seven essential elements for conducting phenomenology according to Munhall are:

immersion; coming to the phenomenological aim of inquiry; existential inquiry,

expressions, and processing; phenomenological contextual; and writing a narrative on the

meaning of your study (Munhall, 2001, p 130). Immersion into the language and

philosophical underpinnings of phenomenology is the critical beginning in a

phenomenological inquiry. It is imperative to go beyond just knowing the meaning of

phenomenology and to develop a phenomenological perspective as an approach to

answering questions (Munhall, 2001). The second step in coming to the

phenomenological aim of inquiry is to "decenter" the researcher by way of reflecting on

her/his own beliefs, preconceptions, intuitions, motives, and biases and put on a face of

"unknowing" when determining your experience that is part of your study. The

researcher needs to come to the phenomenological question free from assumptions,

preconceptions, and forethought about the phenomenon experience (Munhall, 2001).









The third and fourth steps are done concurrently. The third step is to listen to self

and others to become heightened to what is being said by the participants. "We need ...

to be hearing the situated context of their being-in-the-world. ... The thoughts, feeling,

emotions, and questions are deeply embedded in the context of the participant's life, or

life-world" (Munhall, 2001, p. 148). The fourth step is contextual processing or a search

for expression of meaning within the interviews with the participants. The next step is to

dwell on the expression of meaning that you hear from an interview. This contemplation

time is not measurable in time increments, but it takes as long as is necessary to use the

language of the participants to illustrate the particular meaning that is portrayed. A

mulling over, dwelling, revisiting what the participant said are all intertwined in the

previous steps to "really" get to the expressed meaning (Munhall, 2001). Powers &

Knapp (1990) use the words "reflective thoughtfulness" to seek and describe the smallest

trivial aspect of the experience to see the essence of it.

The last two steps are to write the phenomenological narrative and a narrative of

meaning of the study. Writing in phenomenological narrative gives "voice to the actual

language as it simultaneously interprets meaning from expressions used to describe the

experience" (Munhall, 2001, p. 132). It is important to pick a writing style that

communicates an understanding of the meaning of the phenomena by including all of the

meanings, general and particular. Once this is done then summarizing and answering the

phenomenological question is accomplished (Munhall, 2001).

As mentioned by both Van Manen and Munhall, once the orientation of the

phenomenon and the question is formulated, the concurrent process is to start the

existential investigation through in depth conversations where women describe thoughts,









feeling, and concerns about their lived experience. In hermeneutic phenomenology the

interview serves to explore and gather experiential narrative material as a means of

developing a richer and deeper understanding of the experience. It also is a vehicle to

enhance and develop a conversational relationship with each woman. Conversation

between two individuals creates interactive dialogue that provides stories and pictures

that the individual is willing to share (Munhall, 2001). Audio taping the interviews will

facilitate this endeavor. Figure 2 is an outline of Munhall's Model of Existential

Investigation.

The next ongoing process is to perform a linguistic transformation of the spoken

word into writing and interpretation, portraying an accurate description of the meaning

discovered. Munhall emphasizes the importance of the researcher not structuring the

person's story or having preconceived notions of what the women's experiences mean

(Munhall, 2001). Quoting directly from the participants, using their own words from the

interviews will help clarify the points of interest and lend feeling about a specific

experience (Van Manen, 1990; Wilcke, 2002). Once themes have emerged and

descriptions of experiences have developed, another reading and re-reading of the

transcriptions will occur to ensure that all the themes have been identified. Subsequent

readers, who are well versed in qualitative research, will also be asked to read the

transcript to validate interpretive descriptions. Readings and re-reading are all a part of

the hermeneutic circle of understanding or interpretation. This process allows themes to

evolve and formulation of an understanding of the feelings that have been generated by

the lived experience (Patton, 2002; Wilcke, 2002). Time and variation in life events of

the researcher as well as a deeper understanding could continue the reflective process.












The Phenomenon
-Existential Investigation
--Personal experience "The Self"
--Reflection recorded in personal journal
--Obtaining experiential description: "The Experiencer"
---interviews
---conversations
---clinical material
---observation
--Description of others 'experiences with the phenomenon: "the Others"
---interviews
---conversations
---observations
--Locating experiential descriptions in literature:
---theories
---films
---diaries
---biographies
---art
--Anecdotal description:
---serendipitous travels
---"eavesdropping"
---conferences
---responses

Source: Munhall, P. (2000). Nursing research: A qualitative perspective
(2nd ed.).Sudbury, MA: Jones and Bartlett Publishers, p. 143.
Figure 2. Munhall's Model of Existential Investigation

Re-reading the interviews allows the researcher to ensure that the data obtained really

answered the question that was asked and reflected the experience. It is important to

remember to focus not only on the sum of the parts as seen in the interview but also to

examine how they contribute to the whole of the phenomenological aspect of being HPV

positive for a life time (Van Manen, 1990).

Value of the Method for the Question

The purpose of using phenomenological reflections is to grasp the meaning of

living "with" and "being-a-woman" with HPV. Using the hermeneutic circles of









reinterpreting and grasping a better understanding of the lived experience allows the

researcher to have the women's lived experience revealed from the whole to parts to

whole again, gaining a deeper understanding and feeling (Wilcke, 2002).

Research Design

Setting/Sample

The setting was in the North Florida area, although one woman who lived in

Georgia participated. Of the sixteen participants, there were eleven Southern Whites, two

African Americans, one Jamaican, one Hispanic, and one Native American. This reflects

the predominate ethnicities in the North Florida area. Women were recruited via word of

mouth. Advertisements were placed in the Tallahassee Democrat newspaper health

section and on the Advanced Practice Nursing Council website. Flyers were placed in

high traffic areas on the Florida State University, Florida Agricultural and Mechanical

University, Tallahassee Community College campuses and the Leon County Health

Department offices. See Appendix A for the flyer and newspaper notices. The inclusion

criteria were 18 years of age or older, been diagnosed with HPV and had lived with the

virus for more than one year, and had English fluency.

A convenient sample of sixteen women ranged from 20 to 55 years of age. Initially,

ten women were interviewed, with initial saturation for this subgroup occurring after the

seventh interview. As thematic groupings began to come together each subsequent

interview confirmed the groupings rather than introducing new themes. According to

Strauss and Corbin (1998), sampling is complete when the categories are saturated.

Creswell (1998) speaks of saturation as follows: "The researcher typically conducts 20-

30 interviews based on several visits 'to the field' to collect interview data to saturate (or

find information that continues to add until no more can be found) the categories. A









category represents a unit of information composed of events, happenings, and instances"

(p.56). The verbatim transcriptions were reviewed by two nursing scholars who thought

that more subjects were needed to add depth to the study. The researcher's growing

expertise in interviewing techniques also allowed more spontaneous sharing of

information by the participants. Van Manen's words rang true and clear, "the

phenomenological method consists of the ability, or rather the art of being sensitive-

sensitive to the subtle undertones of language, to the way language speaks when it allow

the things themselves to speak. This means that an authentic speaker must be a true

listener..." (Van Manen, 1990, p. 111). Six additional interviews added depth and greater

insight to the study.

Data Collection

Interviews in hermeneutic phenomenology serve as a way to explore and gather

experiences that can lead to developing a richer and deeper understanding about a

specific human phenomenon (Van Manen, 1990). In this study, all but two of the women,

participated in one 2 hour audiotaped interview conducted in the primary researcher's

office. The other two women were interviewed via the telephone. One of the telephone

interviews was done without audio taping due to a malfunction in the recorder and the

request by the participant to continue. This individual agreed to the interview but in

hindsight it seemed to the researcher, she actually wanted to relieve her anxiety about her

upcoming loop electrosurgical excision procedure (LEEP). Although extensive notes

attempted to capture the essence of this woman's experience, it did not truly reflect her

lived experience.

In all interviews, demographic information was obtained initially to help establish

participant/researcher comfort and then the interview guide, as seen in Appendix B, was









used to direct the interview. This research proposal was approved by University of

Florida Institutional Review Board. The informed consent form was completed prior to

each interview. A copy of the informed consent is in Appendix C. A copy of the informed

consent was given to each participant, and the signed copy was maintained in a locked

file in the researcher's university office. Each participant was reminded at the end of the

interview that she had the option to withdraw her data from the study. Each participant

was assigned an identification number. All data generated from this research which

included audio tapes, transcriptions, consent forms, field notes, completed interview

guides and demographic sheets, was contained in a locked file drawer in the primary

investigators university office until the research was complete. Once the research was

complete all data was deidentified, according to University of Florida's research policy.

The interviews were audiotaped using a portable tape recorder then later

transcribed verbatim by the principal investigator. The interview guide helped provide

reminders for the women to describe their lived experiences. In addition to the interview

taping, observations were documented in field notes. Patton (2002) suggests that note

taking during a taped interview serves four purposes: 1) it helps the interviewer formulate

new questions as the interview progresses; 2) reviewing field notes prior to transcription

can help focus the interview; 3) the notes facilitate later analysis; and 4) they serve as a

backup if the tape recorder malfunctions. Subsequent readers, three nursing scholars

familiar with qualitative research were used to validate the researcher's interpretive

description of the participant's experiences.

Data Analysis

Data management is the key element in the analysis process of qualitative research,

and interviews, field notes, observation, and journaling generated voluminous data.









Creswell (1998) suggests that the most appropriate method to grasp all of the intended

meaning from the research is to structure the data into steps/categories such as: data

managing, reading/memoing, describing, classifying, interpreting, and representing,

visualizing (Creswell, 1998). The first step in analyzing data in phenomenology is to

organize and manage the data by creating and organizing files. The next step is to read

through text, make notes or memos if needed as the lived experience takes form, and

initiate codes for the evolving themes or categories. Describing the meaning of the

experience for the researcher is next, followed by listing statements of meaning for the

individual. Groups of statements are placed into units of meaning. The next step consists

of developing a textual description of "what happened"; a structural description of "how"

the phenomenon was experienced; and an overall description of the experience or the

"essence" of the experience. The last step is to present the narration of the "essence" of

the lived experience (Creswell, 1998).

This mimics Van Manen's approach of structuring the data into thematic groups

looking for a common thread or theme to reveal the meaning or the "whatness" of the

living with HPV. Themes, according to Van Manen are the, "elements which occur

frequently in the text" (Van Manen, 1990 p. 79). The analysis is seeking the meanings

that evolve from the words and giving control and order to the research and writing. This

is the structure of the experience or as Van Manen states, "the knots in the webs of our

experiences, around which certain lived experiences are spun and this lived through as

meaningful wholes" (Van Manen, 1990 p.90). To help with the thematic grouping a

computer program was used to manage the transcriptions.









Computer-assisted management and analysis of the data is becoming widely

accepted and provides multiple choices in processing the data. The software program that

was used to aid in data management and analysis was QSR NVivo 2.0. This computer

program provides a file system that promoted organization, speed and storage. Retrieval

of information with NVivo was fast and efficient as material was placed into thematic

groups that evolved from the interview. Another advantage of using the computer

program is the necessity/ability to look at the transcribed text line for line and think about

the meaning of each sentence and idea, which aides in the immersion process of

phenomenology.

Phenomenological Writing

The final step in this research was to create a phenomenological text. Taking what

each woman said provided a written description of the phenomena that gave the meaning

of each woman's experience with having HPV, a sexually transmitted disease that is

chronic and ever present in some form. This is a process to articulate and rearticulate the

meaning of the experience and refine it to portray that meaning in text (Van Manen,

1990).

Research Rigor

In quantitative research, reliability and validity are used to judge and evaluate

statistical findings. In qualitative research, due to the nature of the interpretive process to

help grasp a better understanding of phenomena, credibility, transferability, and

confirmability are used to give the study plausibility and believability (Byrne, 2001).

Credibility can be achieved using multiple strategies, especially if they are built

into the data collection and analysis. In this study, observation, interviewing and

documentation are built in to the research. The initial research plan was to have two









interviews, the first to establish a relationship between the interviewer and the subject,

with the second interview getting to the lived experience. In actual practice there was

only one interview by request of the subjects. Rapport was established on the contact

phone call and the demographic information seeking session that took place prior to the

actual interview. The option for the subjects to contact the researcher at anytime for

therapeutic conversation or after thoughts was reiterated at the conclusion of the

interview session. Field notes were taken during the interview to indicate body language,

emotions, interruption, and facial expressions. The interviews were transcribed by the

primary investigator for two reasons; first to insure that what was stated on the tapes was

transcribed verbatim. Secondly, to hear what the subject was saying for a second time.

This facilitated really hearing what was being said versus thus complementing and

clarifying my initial perception of the interview.

Another element of credibility is bracketing. In phenomenology "all experiences

involves an object of thought, and all thought involves experience. Thus intentionality is

the direction of the mind towards an object which, even if it does not exist, is accorded

the status of existence ... In phenomenology the researcher's perceptions of the

phenomenon, which exist as a result of intentionality, must be eliminated" (Rose, Beeby

& Parker, 1995, p. 1125 ) Hermeneutic phenomenology lends itself to using bracketing,

since bracketing, according to Husserl, indicates that prior knowledge or bias must be set

aside thus allowing a fresh new look or impression about the phenomena. This fresh look

is void of interference from previous interpretive influences (LeVasseur, 2003). The

primary research bracketed out my desire to try to "fix" the participants as possible









patients. Additionally, once recurring themes emerged bracketing was necessary to avoid

anticipating what the new subjects were going to say.

Another criterion to judge phenomenological findings is the ability to transfer the

findings to other contexts. The method in which this study uses transferability is through

thick description. Thick description is used to richly describe the data so that the reader

has enough information to see how the thematic categories were developed. This method

allows the reader to have enough information to judge the appropriateness of applying the

findings to other settings (Byrne, 2001).

The final criterion used to judge this research was confirmability. Confirmability is

accomplished by having an audit trail that an independent examiner can track to see how

the decisions were made to come to the conclusion outlined (Byrne, 2001).

The confirmability of this study was accomplished by having three nursing scholars

review a sample of audiotapes and transcriptions of the interviews. All three scholars are

qualitative researchers and they reviewed transcripts and interviews in relation to the

thematic groups which had been developed. There was general agreement about the

interpretation.

Summary

Hermeneutic phenomenology is a description of life that is lived rather than

theorized. The ultimate aim is to grasp women's experiences living with HPV and to

interpret that experience. It is expected that the entire experience will be captured not

only in words but also in symbols and signs of our known environment that talk to us and

tells us what is meant. Van Manen's method of phenomenology and Munhall's model of

existential investigation give this study its structure. The ongoing process of linguistic

transformation of each woman's spoken word gives the meaning of her lived experience









or the essence of living with HPV. Data was gathered by conducting one interview per

woman and then completing a verbatim transcription. Qualitative research generates

mountains of data, and at times, can be convoluted and overwhelming. Data analysis is a

multiple step process that includes data management, reading and memoing, describing,

classifying, interpreting, and representing the data. The computer program QSR Nvivo

2.0 aided in processing the voluminous data generated and developed a file system for

retrieval and storage. In addition to using the computer program to assist in data

processing, three outside qualitative researchers reviewed a sample of the audiotapes and

the transcriptions to aid in validation of the findings. The information obtained was read

and reread. The next chapter looks at the thematic groups that arose from what each

woman said to about her experience living with HPV.















CHAPTER 4
FINDINGS

This chapter discusses findings using a phenomenological approach to uncover

hidden and explicit meaning in the lived experience of women with HPV. Five thematic

groupings emerged from the interrelationship of the women's world of having HPV and

the meaning of this experience: first, initial and continuing feelings embedded in the

experience of learning of the HPV diagnosis and how feelings changed over time;

second, experiences and fears related to telling others; third, after finding out about their

diagnosis, what they did about it; fourth, transformation and changing behavior after

learning the diagnosis; and fifth, sharing these lived experiences with others because of a

desire to help other women deal with the infection. Feelings that emerged from

interviews varied slightly but in general there was an initial overwhelming feeling of

"what is this?" and "what do I do now?"

As each of the women began to acknowledge what having HPV really meant in their

lives, they were eventually able to take the steps necessary to take back the control of self

that they had initially lost. The process of regaining personal control is a self-

transformation through which each woman regained a healthy self. The experience each

one shared will help guide future encounters for others, both infected individuals and

health care providers. Before describing these thematic groups in depth, using the

women's own words, an overview of the demographics of the participants is presented.









Descriptions of Participants

Each interview was initiated by asking brief demographic questions such as age,

ethnicity, marital status, employment, education, date when first diagnosed with HPV,

what type of treatment was received, and current health status. Asking demographic

questions helped women to feel at ease with the researcher and to become centered for

the interview. Sixteen women were interviewed ranging from age 20 to 55. All but one of

the women was from the north Florida area. Ethnic groups represented included eleven

Caucasian women (including Italian ethnicity), two African American women, one

Jamaican, one Native American, and one Hispanic woman. These figures were generally

consistent with the 2000 Census Bureau's figures for the north Florida area, Caucasian at

66.4%, African American with 29.1%, Hispanic at 3.5%, and other races at 0.8 % (United

States Census Bureau, 2000), which was a goal.

As mentioned earlier, the literature suggests a number of predisposing factors that

contribute to contracting HPV (Koutsky, 1997; Weber & Leone, 2005). Two of these, the

number of partners and age at first intercourse, were asked of each participant. In this

research the average number of sexual partners was 8 with a range from 3 to 30. Five

women were not currently in a relationship; 6 were in a committed relationship; and 4

were married, one of these is a lesbian union. One woman had a child. First coitus was as

early as 14, with nine women starting sexual intercourse at 15-16, and the oldest was at

age 19. I also looked at whether the woman had internal HPV, meaning it was only

diagnosed on her Pap smear, or whether she had external HPV, meaning it was diagnosed

as a visible wart on her perineal or anal area. Six women had external warts and ten had

HPV on their cervix. Three women were diagnosed with cervical intraepithelial neoplasia

(CIN) at an early age. Of the 16 women, seven women had family members that had









HPV, cervical cancer, or some abnormality related to female disease. Additionally, there

seems to be a link between having a CIN diagnosis and having close family members

with HPV. One woman's mother and sister had HPV, and she was diagnosed CIN 3

positive with HPV 16 and 18, which are known to produce cervical cancer after having

only one partner. Another woman was diagnosed with CIN 3 after being sexually active

for 3 years and with only one partner. The third woman, whose mother had HPV, was

diagnosed with severe cervical dysplasia/precancerous (CIN 3) on her first pap smear at

age 16. All but one woman were open about their diagnoses.

Ethnicity was not a central part of the inclusion criteria but the sample was

reflective of the ethnic distribution of the area. It is important to acknowledge that each

woman that participated in this research had her own cultural background, values, and

ingrained social behaviors but no one cultural aspect appeared as a prominent factor in

how they viewed the experience of living with HPV.

Cultural Sensitivity

Culture consists of the values, attitudes, and patterns of behavior that each

individual brings to a social environment. Because this research involves a sexually

transmitted disease it is important to be sensitive to the cultural background of each

woman as it molds the inner self; provides a precedent for types of relationships she

encounters; and defines and reinforces thoughts and feelings particularly in regards to

STDs (Nack, 2002). In this study, subtle comments from the women suggest that values

instilled by parents and grandparents set the tone for their acceptance or repulsion of

having HPV. The initial shock of having an STD resurrected all the thoughts and words

that were spoken about the type of people who get STDs. All mentioned that they were

not the "type of girl" who got STDs. They believed that women who got STDs were









sluts, whores, and loose women. This agrees with Nack (2002), who in her study on the

stigma of an STD diagnosis defines it as "what the putatively stigmatized think others

think of them and 'their' kind..." (p.469). The stigma that HPV carries is explained by

Woman M as what she thinks when she hears someone has an STD, ". that is gross,

who have you been sleeping with, everyone? It is hard to be the one that you were always

judging."

Throughout the social history of having an STD in the United States, a moral

responsibility is attached to the infected person, usually related to the gender, race, and

class of the person (Nack, 2002). Men who get an STD are free from blame as they are

the 'stronger' sex and women who are the 'weaker' sex have to be cursed and are

considered fallen women (Nack, 2002). This seems to be how Woman A perceives her

ex-boy friend's view on having HPV. She said she did not understand how he could

shower in the open showers where anyone at the gym could see his scars. "It just doesn't

seem to affect him."

Johnson (2002.) conducted qualitative research on racial identity that includes the

adoption of personal behaviors and identification with a group of people with similar

characteristic. The age range of participants was 36 to 54 years old. Three themes

emerged from the study: racial identity when growing up; becoming aware of racial

differences, and resenting racial identity. Many persons and factors influence racial

identify development. The participants in Johnson's study suggested that their identity

perception was neutral during childhood, and only later in life when outside forces came

into play did they become aware of differences. The world that they once knew was now

changed due to the "outside world" influences and interaction. This created a need to









alter the social environment. There is much to be said about Johnson's research, but the

one particular aspect that stands out in the research is the way most of the women looked

to their close friends to see how they had to react depending upon how their friends

reacted to the news that they had HPV.

Johnson's finding is supported in this study. Woman J was upset upon hearing the

diagnosis but when her college roommates and friends were told, they seemed to help her

immediately put it into perspective by saying that it was not a big deal since a lot of

people have HPV. On the other hand, Woman G is not telling anyone for fear of

rejection. Woman G's remembers her mother's words from her early teens about how

shameful it would be if her daughter were to get pregnant, and that it would kill her if it

ever happened. On the last visit home, her mother mentioned the pregnancy but also

threw in the STD shame as well. Woman G hears her mother's words everyday she has

an outbreak. She feels that her having HPV would just mortify her mother, therefore she

is not telling anyone. Family instilled values and ideas no matter how "perfect" or

"bizarre" still need to be examined and hopefully understood to help treat, teach, or

counsel a woman with HPV. Cultural sensitivity in all aspects of health care is important

but especially in dealing with an individual that has an STD. The journey that these

women are taking in their self-transformation must include elements of their culture and

the social environment that may demonstrate other values and expected behaviors.

The next area of exploration is the thematic groupings that evolved from the

interviews. During the initial coding of the data, "free nodes" were used to code the data

which created over 20 themes. After rereading the interviews, there were five thematic

groups which better suited the data: feeling embedded in the experience of having HPV;









experiences and fears related to telling others; finding out and doing something about it;

transformation and behavior change; and sharing experiences with others. An additional

topic which permeated all the interviews was the poor support and information given by

the health care providers. Since it was part of multiple thematic groups it was not

developed into a separate grouping, however it is a significant concern. Table 1 is

included to facilitate a visual guide of the thematic groups and each subsection.

Table 1 Thematic Grouping

Feeling Embedded in the Experience of Having HPV
-Feeling upon learning of diagnosis
-Dirty and contaminated
-Feelings of guilt
-Feelings as they changed over time

Experiences and Fears Related to Telling Others
-Fears related to the change in self, future, and meaning
-Fears related to sharing the family, losing face, and respect
-Partner acceptance with strings attached

Finding Out and Doing Something About It

Transformation and Behavior Change
-Self-transformation
-Greater awareness of consequences of behavior

Sharing Experiences with Others

Thematic Groupings

Feelings Embedded in the Experience of Having HPV

An interview guide was used with "trigger" questions to help start and keep the

conversation going and to ensure that all areas of interest were covered. Asking each

woman to talk about their experience of living with HPV resurrected thoughts on how

they felt about having a sexually transmitted disease, particularly one that doesn't go

away. All but one woman said she cried with hearing the diagnosis. The one woman who









did not cr, did not hear or make the connection that it was a sexually transmitted disease,

and her thoughts were more of a disease that needed to be cured. Feelings varied

depending upon the diagnosis, the situation, each woman's perception of what it meant,

their friends' perceptions and acceptance, and whether it had a visible manifestation or

whether it was a "distant" entity on their cervix.

Feelings upon learning of the diagnosis

Each woman used words to describe how she felt upon being told she had HPV.

Words like "dirty," "contaminated," "disgusted," "ashamed," "embarrassed," and

"guilty" were used. As the women spoke these words, they said them with such emotion

there was no doubt about the depth of feelings they have been living through.

Woman C: I cried. I did cry. I try to ask a lot of questions, how does this
affect me and again I just started a new relationship and I really like this
person...

Woman D: Cried, for a long time, I just cried. It is unbelievable like you
don't know whether what is going to happen, you don't know ... I don't
know!

Woman G: You know when it happen, when I found out I cried, cried,
cried, and cried for days [sensitive laugh] ... I was miserable, like during
when she told me what it was, I was, I couldn't believe it, because when
you hear about people getting STDs all the time and you never expect you
to be that one. You never expect to get it. You never expect to be the
person that has something, because you expect somebody else to get it.
You never expect to actually get it yourself and so I just cried.

Woman H: I did it all. Probably more than anything, I was just sad and
cried about it for a long time.

The literature supports various emotions connected to having an STD. Meerabeau

(1999) looks at embarrassment and sexuality of health care. He defines embarrassment as

a flustering caused by the perception that a fumbled performance or event evokes an

emotion that is public. He sees shame as a self-blame or self-disgust, a look within or









internal perspective. Woman G stated that she was not ashamed but more disgusted with

herself because she did not follow her self imposed chastity and resolution to be more

selective in future partners, when a previous "flame" from high school called and she

abandoned her position. She feels she lowered her standards and to add insult to that

emotion she contracted HPV. She states how embarrassed she was.

Woman G: And you know, it is embarrassing, and I don't like it, it is
something that I don't like, and it's just .. horrible! Horrible!

When Woman D was diagnosed she had been going with her now husband for over a

year before she finally told him. She was her husband's first and only partner.

Woman D: I was worried about him [boyfriend] and it was embarrassing. I
didn't tell him for a long, long time. I mean I still feel guilty about that
part.

Vuokila-Oikkonen, Janhonen, and Nikkonen (2002) describe patients' experiences of

shame as a painful and ugly feeling, resulting in devaluation, isolation, and a feeling of

inferiority. The experience of shame can disturb an individual's world spiritually,

psychologically, sociologically, and anthropologically. They also note that shame has its

origin as a spiritual dimension with the tasting of the fruit by Adam and Eve. In this

regard, shame is a moving away from God, a loss of identity and experiencing themselves

as being nobody. An example of this conflict was Woman P, who struggled with her

diagnosis and decided that the only way to come to terms with it was to turn to God. She

stated that she had some good conservation with a couple of her Moslem friends which

made her realize that being able to handle many of her life issues, HPV included, was

directly related to the fact that she had been pulled away from God and all that it

involves. She has been able to feel better about herself currently because she has a

positive relationship with God now.









The psychological aspect of shame can be viewed according to Freud as the affect

of inferiority (Vuokila-Oikkonen, Janhonen, & Nikkonen, 2002). Shame is a key factor in

an individual's inner being and conscience, which can result in low self-esteem, poor

self-concept or body image, self-doubt and insecurity, and diminished self-confidence.

Many of the women portrayed an image of themselves as people that just didn't get an

STD. "Those people" were of loose morals and played around a lot. Woman M has

external warts, and at the beginning of the interview she had an air of confidence but as

the interviewee came to the topic of warts and her feelings, she became less and less sure

of herself. The following is how she sees herself and others with HPV:

Researcher: What is your emotional state right now talking about this?

Women M: Embarrassed! It is because I have it, and knowing who I am, I
would probably, if it wasn't me, and it was someone else, I would be like,
that is gross, who have you been sleeping with, everyone? You know. But
being me, it is like I have it and it is hard to be the one that you were
always judging!

The third and fourth aspects of shame are sociological, with the interruption of the

interpersonal process and anthropological in which a failure to comply with certain

values or beliefs of one's culture elicits shame (Vuokila-Oikkonen, Janhonen, &

Nikkonen, 2002). The psychological and sociological aspect of shame will be discussed

in depth later during the section on telling others. Two of the women interviewed

mentioned their family's culture and values and the effect it had on them in regards to

how they felt. Woman C states she is not ashamed but she knows that her Jamaican

parents will be upset; therefore she feels shame in disappointing her family. This same

woman described herself as open and an advocate for women to be totally aware of their

bodies. She waited to have intercourse until she felt the time was right both physically

and emotionally. She made sure that her sexual partners always wore condoms. She is









convinced that she was exposed to HPV from her second partner as he attempted to have

intercourse without a condom, and before she could stop him they had skin-to-skin

contact. She says she did not see any warts but she has always been very careful and he is

the only one that it could have come from. When first diagnosed, she initially said she

was not ashamed but she felt dirty and embarrassed.

Women C: I'm not ashamed; it is nothing that I would advertise. I think
that the only shame that I would have is probably the reason why I have it,
is telling my parents, and it is just because their ethnicity and background.
I don't think that my parents are oblivious to the fact that I have had
sexual intercourse, I mean I am sure they know especially since I live with
someone. That would probably be the only shame that I would have is
them knowing. I don't know if I would really be ashamed maybe a little
embarrassed. But no I'm not ashamed.

Woman A says her mother is an Italian Roman Catholic and only been with one man, her

father. Her mother will not understand or condone her having sexual intercourse with

anyone other than her husband. She would like to talk to her mother but knows that it will

probably never be possible. In fact, she has not told anyone except her first boyfriend,

where she knows she got HPV, and his mother.

Dirty and contaminated

Many cultures stigmatize women who contract an STD. The feeling of being dirty

or contaminated seems to be common. They historically are denoted as "loose" women,

sluts, and persons of low morals and promiscuous behavior (Nack, 2002). Definitions of

promiscuity change over time, however, Woman B, for example, feels she is not

promiscuous as she had only been with three partners, and at the time of diagnosis she

had only had one partner and was just beginning to develop a relationship with her

second one.

Women B: That made me .. not, not in a way to make me feel bad but I
knew that he [second partner] felt that way and it made me feel "DIRTY"









and ashamed, [voice reflected a solemn sound, almost tearful, and
emphasized the word dirty) but I kind of felt like forever I was going
to feel kind of "dirty" (low voice). Like contaminated, that is just how I
felt.

Another woman states she became sexually active at age 14 and has had a number

of partners. She never expected to get an STD even though she did not use protection all

the time. When she was diagnosed this is what she felt:

Woman I: I cried for days! I felt dirty! I felt that people didn't want to be my

friend!

Stigma can carry a lot of power by marginalizing individuals. Bartky (1990) states

that there are three beliefs related to shame, 1) the general belief that when someone

deviates from the norm they are also labeled as someone of lesser worth; 2) the individual

must realize they have deviated from this norm; and 3) in deviating from the norm the

individual has altered their standing in the world. Along the same vein Hahn (2000) sees

shame as an experience of devaluing internal representations. Shame can be manifested

by withdrawal, attacks on self, avoidance, and even attack on others. The women

interviewed were no different than the above research suggests. They viewed themselves

as lesser beings, damaged and scared.

Woman G: Yea, I was miserable, like during when she told me what it
was, I was, I couldn't believe it. Because when you hear about people
getting STDs all the time and you never expect you to be that one. You
never expect to get it. You never expect to be the person that has
something, because you expect somebody else to get. You never expect to
actually get it yourself and so I just cried.

Woman A: I was very ashamed of it! It is something like you want to
speak to your mom or someone but you can't. I haven't told anybody ... I
haven't told friends because nobody wants to have an STD and .. you are
associated with a certain group that you would rather not be. I try not to
bring it up to anybody.









The emotions of shame affect how these women feel about themselves, how they

relate to others, how they progress through life, and even how they view the world. The

concept of shame carries feelings of guilt, punishment, self-reflection, retribution for

some unspoken event that aids in devaluing an individual's self worth and self esteem.

The first woman interviewed focused her emotions on the physical scars she received

from removal of external warts. She did not state that it was a punishment for a "horrible

act or misconduct" but her physical scars have left some long lasting emotional scars.

Woman A: And it wouldn't be a big deal to me if... except for the
scarring! It makes me feel like I'm infected because there is evidence of it.

Later in the interview she discusses her ex-boyfriend and his scars.

... And I hate the possibility of someone looking at me, like I kind of
have looked at him and the fact that he has HPV too. I hold the same
stigma for him as I'm sure that other people would in general for the virus
that. He also has scars. Not as bad as I do. He is in the military now and he
doesn't look at it as a bad thing at all. He sees a wart and he gets rid of
them and that is it. That is all he has to do. If he doesn't have a wart on
him he doesn't even think about it. And he hasn't had any come back and
... I don't understand, he gets in the shower with all these other guys and
he has scars on him, it doesn't even phase him. If I had to do that I would
freak out. I just can't do that.. .I can't even open myself up to ... or even
allow them to wonder about that.

Feelings of guilt

A number of women felt guilty initially about not telling their partners that they

had HPV and then felt that they might be responsible for transmitting the disease. The

thought of transmission was almost overwhelming for several women.

Woman D: I was worried about my boyfriend [husband now]. Like
making him safe or anything like that. And I kept dwelling on, of my God
what I done ... I still felt guilty. Like I don't like keeping any thing from
him [husband], you know, and I tell him every thing now ... That is a
little too much but because if I ever got sick or if I ever did get cancer I
totally think he has the right to know. Especially if we are having sex
together.









Woman E: Where I'm at right now, I pray that someday I can make
amends to the people that I have hurt. I don't feel guilty about it because I
have confessed all my wrongs to God and that is where I don't have to
walk around everyday making it eating me up inside. And so I don't feel
... I feel a lot more, the guilt was always from some sort of fear that I was
going to lose or be exposed and I guess where I'm at right now neither of
those things could .. they won't kill me and even if they did kill me, it
still won't kill me.

Woman G: I was actually seeing somebody at the time, and I got really
scared and I got upset, because I was like oh my God, I gave it to him and
I really got upset by that. So then I didn't have sex with him for over a
month after I found out. I didn't want him to touch me. I got depressed
and I just didn't, I mean, we still hung out but we didn't have sex, because
I didn't want to. I was afraid; I didn't want him to touch me at all!! I was
afraid!

Feelings as they changed over time

Each woman said that comprehending what the initial diagnoses meant, in physical

terms and emotionally was overwhelming. For some, the emotional transformation from

first diagnosis to present is only an abnormal Pap smear diagnosis away from reverting

back to how they felt at the beginning. The further away from initial diagnosis and having

normal sequential Pap smears pushes the issue of having HPV further and further back in

each woman's mind. Woman K was diagnosed over 23 years ago and has had over eleven

years of normal Pap smears. She is an open and candid woman, and after she consented

to participate in this research, she realized she had not told her current partner that she

had HPV. Partly due to her age and the age of her partner there was not an awkward

moment in her disclosing her HPV history. Her biggest concern now is insuring that she

does not get cervical cancer. Cancer runs in her family and her great-grandmother had

cervical cancer.

For Woman 0, it was different as she had not made the initial connection that HPV

was a sexually transmitted disease, therefore she only went through the constant Pap









smears every 3 months so that her health care provider could "keep and eye on it" for a

"female problem." In fact, she went through a sort of reverse metamorphosis during our

interview. This woman went from thinking that she would not be able to add much to the

research to actually demonstrating what a woman goes through when first diagnosed. She

noticed on the consent form that another name for HPV was genital warts, which she

knew was an STD but she did not make the connection. Her health care provider

indicated that it was a common occurrence to have HPV on the cervix, and that they

would watch it before they did any treatments/test. It was not until the interview that she

became aware that her diagnosis was actually a STD. Asked if they had told her it was an

STD, resulted in a totally stunned look on her face, and she replied that they did not tell

her. She had just now made the connection.

Woman 0: I didn't, that is why it was like, when you were saying to me
on the phone, how has it affected you, it hasn't affected me. I just never
thought about. And if I had known about if being an STD, it would have
been big time on my conscience about involved sexually with people. I
just feel it is an obligation.

Researcher: Well, now that you have found out it is a STD, what is going
through your mind?

Woman 0: Wow, I have a STD; I have a sexually transmitted disease! It is
kind of scary. It is kind of scary. And I think the next time I am intimate
I'll be kind of... concerned! Am I passing this on or something? Yea,
like you said, yea I had a pap smear but I haven't had it...

She also concluded at the end of the interview that she felt "dirty" now that she

knows HPV is a STD. For six years she was only slightly bothered with repeated Pap

smears but at no time did she realize that she had an STD. Now she has to process this

information and decide what to do.

Being diagnosed with HPV is a life-changing event. All but one woman is currently

free of infection or warts. Not having any outward signs seems to give women a sense of









control. Woman G states she has not had a reoccurrence yet but she is waiting for it to

return. She knows it could happen. She also states that the warts aren't there so she does

not think about it. Other opinions were expressed by several participants.

Woman B: Now I feel really like it is not, it's totally livable with. I'm not
a real promiscuous person and it's not like every weekend I'm going to
have to tell somebody that I have it. I don't really care anymore; I really
don't care because I didn't really do anything that bad. I didn't really do
any thing that everybody else hasn't done. Yet people are sexual, yes
things happen, there are lots worse ways I could put my self in jeopardy
and I'm doing a good job but things still happen.

Women A: It is a moral issue to me. To me I don't feel like it is a bad
thing anymore. I still don't like it and I wish it was gone but it's not
something that has put me in bed for weeks on end because I'm too sick to
move, it doesn't affect my health in a way that most people would
consider a STD would. But it ... there is no discharge or smelly chunk
stuff coming out to make me ... I don't feel any less attractive but on a
deeper level I do.

Woman I: That took a while. I'm kind of there now but I'm not,
sometimes it will be like this sucks. And other times, well oh, you know
what ever, I can manage it. But book stores, Barnes and Nobles, Border,
they have a little medical section and a couple of good books and that
helped me.

Woman E: Where I'm at right now, I pray that someday I can make
amends to the people that I have hurt. I don't feel guilty about it because I
have confessed all my wrongs to God and that is where I don't have to
walk around everyday making it eating me up inside. And so I don't feel
... I feel a lot more, the guilt was always from some sort of fear that I was
going to lose or be exposed and I guess where I'm at right now neither of
those things could .. they won't kill me and even if they did kill me, it
still won't kill me.

Experiences and Fears Related to Telling Others

The stigma of having an STD plays a major role in whether or not a woman

discloses her status to family, friends, and sexual partners. The reaction varied from

woman to woman but whether they disclosed or not was linked to the stigma of HPV

being a STD. As mentioned earlier, shame is different from embarrassment and even









stigma as it is an emotion or an internal readjustment of oneself after a life-changing

event. It can be intense negative emotions that result from standards not being met, issues

of failure occurring, and placing the fault on oneself (Cunningham, Tschann, Gurvey,

Fortenberry, & Ellen, 2002). Sullivan and Lacy (2001) view shame as a mark of sexual

abuse. A woman's entire being and how she relates to others is permeated with emotions

of shame. The emotions of shame affect how she feels about herself and how she acts.

Having HPV is a matter of having a socially unacceptable event or illness (STD), and

what is done with it.

In general, most women in the study did not feel free to disclose their diagnosis of

HPV. The women interviewed ranged from having lived with HPV from one year to

twenty-three years. Surprisingly enough, there was little difference in their coping over

time. Most of the women did have a friend to talk with about their diagnosis; only three

women had confided in their mothers. All women, except Woman D, who were in a

committed relationship or married told their partner right away. Woman D was diagnosed

a year before she got married and it took her an entire year to figure how to tell her

husband. She felt guilt constantly. She finally told him after one of her follow up

gynecologist appointments, as it seemed an appropriate lead in. He was understanding

and wanted to know if it was dangerous for her.

Two women felt it was important to tell their future partners before they

participated in sexual relations. In fact, woman H disclosed immediately to her current

partner and two previous one when first diagnosed. She has had two other partners since

her diagnosis and elected not to tell them. She felt she was not contagious, as she has had









normal Pap smears for two years. This thought process was common for other women

too.

Fears related to the change in self, future, and meaning

Many of the women struggled with changes that HPV brought to their lives. But

one woman in particular struggled with the diagnosis in regards to how she perceived

herself, how others perceive her, and changes in her future. When she was diagnosed, she

was a freshman in college and was very social. She was trying to balance school work,

job, and social life. A number of life changing events occurred within weeks of her

diagnosis. She was trying to make sense of the diagnosis of HPV and all that it means,

when 9/11 occurred. The coincidence doubly affected her. Additionally, she found her

best friend's boy friend in a compromising situation with one of their other housemates.

She had confided in her best friend about her diagnosis as she felt she needed to tell

someone she trusted. This trust was short lived when Woman P found out that her social

circle of friends had learned that she has HPV. There was no support from the circle of

friends. She felt that her life was over and depression set in. Before something drastic

happened, she decided to quit school, move back home for support emotionally, and seek

better medical help. Subsequently she went through many changes. A first impression of

this woman during the interview was that she was confident and anxious to tell her story

to confirm that she was going in the right direction. Woman P was able to express how

her life had changed and she credits a critical element in a transformation was rekindling

her faith. In her words:

Woman P: I had told these people on my job that I was happy at my job.
And they talked about Allah and I talked about God and we just started
down a different path and I thought that one of the reasons why things
were going so bad in my life was because I wasn't having a stronger faith
and so I became more driven to have a self awareness of what was going









on with my self and to have a stronger faith in God and to build my
relationship on my own with myself; to become more confident, and to not
let things regress me. And then I have the relationship with God and I
realized that maybe things were so bad because I wasn't paying attention
before. Like I was just letting everything go to the wayside and I really
had to have a stronger belief and I know you really; I know some people
do not like to mix science with religion but I felt like a lot of things were
taken away from me when I became more religious or I became stronger
in that faith.

Fears related to sharing with family, losing face, and respect

Disclosing to family members that one has an STD was an insurmountable obstacle

for some and second nature to others. Woman L really did not have a choice about telling

her mother since she was 16 when she was diagnosed. She initially went to a health

department to obtain birth control pills and a week later the results of an abnormal Pap

smear came in the mail. The letter scared and confused her so much she had no choice

but to tell her mother just to make sense of the diagnosis. All she knew was she had

cancer-like cells on her cervix and they needed to be removed. Her mother was a great

help throughout the treatments and follow up visits although she did manage to chastise

her for becoming sexually active at an early age and ended up blaming her boyfriend.

Upon diagnosis Woman L stated she only had 2 partners within the previous year as she

had become sexually active one year prior.

Woman A mentioned she would like to talk to her mother but due to her strict

religious upbringing and Italian heritage, she feels her mother would never understand.

She had made a few attempts to bring up the subject but her mother just did not want to

talk about it. This woman has not disclosed her diagnosis to anyone other than her

boyfriend that she got HPV from, and his mother, who is a nurse. She did say she had to

tell a man she recently had sexual relations with only because she felt he needed to know

in order to protect himself and his girlfriend. She was not proud of this one night









encounter but she feels she probably did not expose him as she is vigilant in watching for

lesions and has not had any in a while.

Fear of rejection was present in many women's thoughts but what made this short-

lived was the acceptance by close friends and partners. Finding out that you are not the

only one in the world that has this infection is consoling, but it is still life changing.

Woman G fears that others will look at her as she looks at others that have an STD.

Woman G: it bothered me a first thinking she was going to tell a bunch of
people. Uhm, now with another partner, I'm just afraid, I'm more afraid
that they are going to outcast me and they are not going to want to talk to
me anymore! That is the big thing. Especially, if it is like potentially like a
husband, or life time partner.

Nack (2002) mentions that women with chronic STDs view themselves as they view

others with the same stigma of an STD, good girls do not get STDs and bad girls do.

Along the same lines, Taylor (2001) defines stigma as a distinguishing mark of social

disgrace or a deviation from the "ideal" or expectation.

Woman D discusses her impression of one who has an STD:

Woman D: It is easier in the sense that you have somebody else to talk to
about it. Hum, it is also easier because, like, I guess it is the same concept
like you are not alone. It is a common thing, so, I mean not because you
have bad hygiene, or something like that but I mean that a lot of people I
know relate an STD to a person who has sex all the time or a person who
sleeps with a bunch of people, or you know a hooker on the street. That is
the hard part, that people associate STD with that. I had the same concept
when they told me it was an STD and all. I thought oh my god! (laughter)
I remember in high school there was this one girl who had herpes and
everybody knew she had herpes because she would have these outbreaks
on her mouth. They were just the ugliest things and people made such a
big deal out of it. Oh my god, STD.

Partner acceptance with strings attached

Disclosure to a partner can have devastating results, and surprisingly, all but one of

these women had no major issues with their partner's acceptance. Woman E was in a









committed relationship with many strings attached. When she was diagnosed she did not

disclose to her partner for quite a while. The guilt was overwhelming and so when she

finally told him, he used this against her to the point of emotional and psychological

abuse. When she finally told him she felt she needed to make up for her dishonestly so

she tried everything in her power to please him to the point of compromising her values.

He found he could request various sexual fantasies of her and she would fulfill them.

Women E: I don't even know why, but uhm, my boyfriend that I'm with
now, we were together for, we have been together for three years and we
have been having unprotected sex for a month and I kept having the
nagging feeling like you should have told him about this! You should have
told him about this! But I never had had any genital warts, never had a
manifestation of this virus that they said that I had. And so part of me
didn't want to believe that I had an STD!; because I had never seen it. And
so a part of me was kind of in denial about telling him that I did. After
about a month I told him and he was of course terribly upset with me for a
long time held it against me! I mean even now it is hard for him to not
hold that against me. He has had, he has manifested genital warts, like on
different places. Like one time on his stomach and one time on his mouth.
That was always kind of weird for me because it was like, uhm like a
mirror bouncing back something that I wasn't able to see in myself. The
first year of our relationship I spent a lot of time seeking out girls to hook
up with so that the three of us could have you know, crazy bisexual sex;
and all the time this nagging feeling that you are doing exactly what you
did to him to these other girls. To him it was completely justifiable. If I
could do it to him, I should be able to do it to anyone. But I never met to
hurt anyone nor wanted to hurt anyone. I was too ashamed to admit it until
it was too late. And that went on for like I mean with us having sex with
other people or other girls, I should say, for almost for the whole duration
of our relationship. And he would always use, I should say always, a
couple times he didn't want to use condoms but I always made it a point
that he would but that is still a double standard. And I guess there're so
much bad feelings about about what I was still participating in, the fact
that I was still passing the virus on but not being responsible for it, and he
didn't even seem to think that I would think it was a big deal.

Finding Out and Doing Something About It

As mentioned earlier, six women had external warts and nine were diagnosed with

internal HPV. The diagnosis was life altering for the women but the six who suffer from









external warts seem to struggle more with the diagnoses than those ones who do not see

their HPV but are only told about it. Woman A will not even undress at the gym where

others may see her scars where the pubic hair did not regrow. Woman M has a close

friend that has internal HPV and this is a comment she made about the difference

between her infection and her close friends infection:

My friend has it but she doesn't have the lesions, she doesn't know the full
effect of how it feels to have this nasty genital warts!!! (Embarrassed
laughter to almost tears) It is so disgusting!

Woman M has a current outbreak so she is living in the present moment of having

HPV. She stated that she would rather have gonorrhea or chlamydia than HPV as she said

they can be treated; the warts will have to be dealt with for the rest of her life.

Women who found out their diagnosis from an abnormal Pap smear were notified

either by telephone for a follow up appointment or by mail. The women who had

suspicious external lesions had the diagnosis confirmed immediately. Overall healthcare

providers were less than adequate in giving the women their diagnosis and telling them

what to do about it. The major treatment plan was to have a colposcopy, a procedure that

takes a small biopsy of the cervix, as eleven of the women indicated. Woman L had this

to say about her experience of being diagnosed:

Woman L: I went to a gynecologist and they did the biopsy to see how bad
it was. And they originally thought it was just moderate and that they
would be able to freeze my cervix and complete it. The day of my
procedure they called and changed locations on me saying it was a lot
more severe than they thought it was and that they were going to have to
do a completely procedure which scared the crap out of me. I went and
had that done, it was pretty invasive, they swear it doesn't hurt. After 4
bottles of lidocaine I could still felt everything. I cramped, and bled, and
whatever, it was awful. I had that done and then it has been normal ever
since. I haven't had any problems, I never had genital warts, I just had the
HPV. I'm so thankful for that. I have had normal Pap smears ever since.









She was upset that they did not prepare her well enough about what to expect,

especially the pain involved. A number of women who had a colposcopy mentioned how

painful the procedure was and how unprepared they were. Woman N was not told that

after cryosurgery she would have a copious amount of liquid discharge once the freezing

thawed. This was extremely upsetting to her as she was living in the dorms at college at

the time and did not have a good support system.

All the women complied with follow-up Pap smears as this is a marker of how their

HPV is progressing. Many of the women use this marker to determine if they are going to

disclose to a partner or not. The women that had internal warts used the normal Pap

smear as a gauge of whether they could spread HPV or not. On multiple occasions, the

women said when the Pap results came in the mail and it was normal then it was time to

celebrate.

Many of these women felt that men did not take this diagnosis as serious as they

did. Woman H put it this way:

For guys .. for one I don't think that they get tested as much as girls do.
If they don't see it, they are like, I don't have anything. And especially if
they hear about HPV and the fact that it is cervical cancer, it's like I'm
safe! And girls, I think, are a little different to a certain extent, like
because my roommate just found out that she has it. Even though she
knows that it is a small percent cervical cancer, she still hates that she has
it and it is horrible to her that she has it.

Woman N: It is kind of like ... I don't know it is sort of one of those
things that everybody has it, it is not that big of deal, don't really worry
about it you are going to be taken care of and you are going to get your
Pap smears every year, you will be ok and so it never came up. You know
as the years have gone on, it is one of those things that I do wish I had
more information, I do wish I knew more of the biopsy results, and to find
out, is this the kind, I think there are so much kinds of HPV that are more
likely to cause cervical cancer than others. I don't know that history now,
these 11 years later.









Woman M mentioned that her boy friend went to his physician to check a suspicious

lesion and the physician said he was not sure what it was but if forced to make a

diagnosis, he would have to say it was a wart, but no treatment is needed as it would go

away. Getting the diagnosis posed many questions that each woman had to resolve,

particularly with the treatment plan. Follow-up Pap smears and examination are all part

of the treatment process. In addition to the physical treatment, each woman must go

through an emotional and psychological change in order to move on with life. This sort of

thought process is the self-transformation that each of the women has to travel in order to

get a new perspective on the disease in their life and what having the disease means.

Transformation and Changed Behavior

The literature indicates that when an individual is faced with a disease that

mandates change, there are stages they go through to help them with the transformation

(McQuiston & Webb, 1995; Nack, 2002; Nack, 2000). Transformation was significant in

this research, as it is the process for women to take back control of the diagnosis of HPV

and their lives move on. The women in this study described the experience and diagnosis

of HPV as a life-altering, self-transformation.

Self-transformation

The transformation started at their diagnosis, a critical changing point in their lives,

and continues to present time, affecting them spiritually, culturally, psychologically,

socially, and physically. These forces whether positive or negative had an impact on their

lives. Woman E was able to move forward in her ability to live with HPV by reinvesting

in her faith. She mentioned, once she turned life events over to God, the burden of

having HPV was not as overwhelming. Several women mentioned their inability to

confide in their mothers due to rules imposed by their family's culture, so having HPV









was an unspoken burden with these women. All women had emotional ties and

psychological issue to overcome in order to move on. Many of these issues were tied to

the stigma that accompanies HPV. Dating for the single women has changed. Woman A

only goes out with a group of friends so she can use them as an excuse to prevent being

alone with a man. Several women mentioned their sexual libido has diminished. Woman

C has a life partner and she mentioned if they never had intercourse again it would be

fine with her. Woman M had felt something different in her genital area and

subconsciously feared it might be something bad so she went to the health clinic. She did

take her best friend "just in case" but upon hearing the verdict she lost control both

figuratively and emotionally. Her friend was able to help her through the diagnosis and

beyond as she had been diagnosed six years ago, but still with tears in her eyes she said,

"I hate that I have this". She has external warts that resulted in more emotional and

physical trauma than occurred among women who had it on their cervix. Woman A only

sees her scars, Woman M only feels for warts every time she voids. They have both lost a

part of control over self.

As the women described their struggle to regain this "control," tears would appear,

voices would become somber and softer, and their journey would begin. From what was

learned from this research, if they had been diagnosed with gonorrhea, an STD, it would

not have resulted in a transformation of this magnitude, although the stigma of having an

STD shakes a person's core values. This life-altering disturbance mandates action to

move forward. Women B made these comments when asked what she would tell other

women that find themselves in the same situation:

Woman B: I would tell them that I know it's a surprise and it's scary, and
it seems devastating at the time there are lots of things you can do and









it is not the end of the world (spoken very slowly and thoughtful). These
problems that seem so huge now, when you start doing your research you
are going to realize that lots of people have these problems. You can live
your whole life and be fine.

She has been dealing with HPV for over four years and has made remarkable

progress. She initially struggled but after all the crying and treatments there becomes a

time when you know you must go on and evaluate where you have been and where you

want and need to go now.

These women had to make choices in treatments, disclosure to family and friends,

experience alterations in sexual encounters, redefinition of self values and trust issues,

and even address future fears of whether they will be able to have children. Woman E's

choices seem almost unreal and destructive in nature. As mentioned earlier she allowed

her boy friend to exploit her guilt of spreading HPV to him and not telling him, by asking

for various types of sexual encounters that she only performed because she felt guilt. She

did not take ownership of her condition for many years. Only after internalizing what

having HPV meant to her was she able to transform her "self' and move forward.

The multiple influences throughout the transformation process are dynamic and not

totally inclusive. Women move back and forth in their transformation. Woman K

mentioned that as soon as she was diagnosed, she told her current boy friend and

contacted her other two previous partners. This may have been partially due to her

openness but she also hoped to find out how she got it. When none of her partners

disclosed they had HPV, she then realized that she may have been the person passing

HPV to others, thus changing from being a victim to being the source. After the

interview, Woman K asked if she could pass on the virus even though she had had a clear

Pap. At this point she had to rethink her current situation.









Woman A, still carries a "warped" view of her self-image and the stigma of HPV

being a sexual disease. Her physical scars from treatments remind her daily of her HPV

infection. She bases her core values of who she is on her physical being. She is fearful

that someone may see her scars, which, to her, demonstrate a lack in social value. She

hides both physically and emotionally. When she goes to the gym to work out, she only

dresses in a closed area for fear someone may see her scars. Additionally, her dating

habits have changed to the point of only going out with friends to avoid entering into a

situation that would lead to intimacy, which would require revealing her scars.

None of the women in this study choose total life-long celibacy but a greater

selectivity of with whom and when sexual encounters would occur were prevalent.

Comments about their sexuality and libido did come into question. This was linked to the

fear of transmitting it to their partner, as well as to knowing they have a disease. The

freedom of having intercourse whenever and with whomever was taken away from many

of the women who have HPV. Woman P, who had 30 partners, did not seem affected by

the number of partners she had. In fact, she indicated that it was expected, and only

because she had HPV did she consider limiting her encounters and being more selective

in her choices:

Woman P: And I will say that I have changed over the years since that I'm
not as sexually liberated as I was before. I was very sexual and I really
didn't care what other people thought, I would say, I would tell people that
I was fast. I would say I like this guy, I like this guy ... I don't go out as
much as I use to. I use to go out a lot when I first found I was ... I would
go out a lot, I would drink a lot, I would do drugs, I would stay out on the
street and I didn't talk to men a lot but I found happiness in other things
that really weren't good for me either.

Woman G mentioned she just stopped having sex initially.

Woman G: I was already afraid that I had given it to him since we didn't
use any protection at all. I don't know, I got depressed and I just didn't, I









mean, we still hung out but we didn't have sex. I didn't want to. I didn't
want him to touch me at all!! I was afraid! The women in this study all had
some sort of follow up treatments (Pap smears, topical treatments for the
external warts, or LEEP and colposcopy procedure). One woman
mentioned that she wasted an entire year trying to figure out how she got
HPV as she did not considered herself promiscuous and only had 3
partners. She does not think about how she got it anymore. Knowledge is
power and learning everything they could about HPV was consistent with
all the women. They wanted to know what it meant to have HPV, where
did they get it, and why them. Part of the transformation process was how
they felt currently about having HPV. The transformation that each
woman made was at her pace and comprehension.

B: Now I feel .. really like it is not, it's totally livable with. I'm not a real
promiscuous person and it's not like every weekend I'm going to have to
tell somebody that I have it. It changed me a little bit in that my physician
that performed the cone biopsy on told me that sometimes it would
interfere with the ability to have children? And I had a really, really didn't
want children and I mean I like kids but I kind of thought you know it is
such a commitment and at that point it changed my whole way of thinking.
It made me realize how important that was and of having a family of my
own. And I think I've been a little bit too focused on that since then like I
really, really, want it so bad but I know I need to wait. But at the same
time I, it scares me a little bit. That one day that day will come and I'm not
going to be able to have children. That is not what you talked about, you
talked about in class about problems, of transmission.

When a woman with HPV is able to come to the point of having a greater

awareness of what the experience of HPV is, she is better able to internalize the

consequences of her conduct in the past and present thus allowing the "self' to move into

future experiences. This internalization is the core of living and shapes new experiences.

Greater awareness of consequences of behavior

All women were painfully aware of the consequences of getting HPV. I use the

word painfully as the changes made seemed to have more of a negative experience than

positive one. Changes that occurred were dating dynamics, decrease in libido and

intimacy, increase in guilt, moving toward making choices with head and not for physical

and emotional desires, uncertainty of passing the virus on even if they had no symptoms;









fear of not being able to bear children, and fear of cancer. The process of dating and

looking for a life long mate has changed. Woman G recently broke up with her boyfriend

of three years and now she has become interested in a married man. She has not been

intimate with this man for fear of passing the virus on to both him and his wife. She

struggles with having HPV and has imposed a period of celibacy just to keep her sanity.

Both Woman I and Woman P stated they are currently single and not necessarily looking.

In the past neither thought twice about being with a guy if he interested them, but now

there has to be more to the relationship before sex is initiated. This is quite a change for

Woman P as in the past she proclaimed that if she liked a man she was in bed with them

immediately; "I am fast".

Change in libido or altered mood was common among all women. Woman D said

that it is hard to want to have sex if you feel guilt about not telling your husband that you

have HPV. She also said that her desire and ability to get in a "loving mood" has been

difficult since the diagnosis. In fact, this was true for a number of women. Woman C has

been with her partner for over 5 years and she says he is her best friend and they share

everything but if they never had sex again it would be alright with her.

The fact that most of these women are not married indicates that their interest in

dating is a big social experience. Woman H stated it this way:

Woman H: Well, I've recently, (laugh) had this big like realization and
just about this whole dating aspects in general and the next guy I'm with
for one, he will definitely know before hand because I want to wait a
really long time before we ever have sex. You know, I want him to be the
guy I'm going to marry, so if he is that guy, he'll know, you know,
definitely.

A positive aspect of getting HPV is the necessity for these young women to mature

before their stated years and be role models for others. Woman H who is 20 has realized









that there are a lot of people still being careless about sex, but for her the diagnosis has

helped her mature.

Woman H: maybe I would have realized it more as I got older but I still
know lots of people that are my age that I consider very intelligent people
that have no idea, really, like they think it is not going to happen to them.
They still have that, careless attitude about sex, and why not. In a way, I
think getting it when I did helps me like, maybe like stop having sex to a
certain, like maybe I would have sleep with more people you know or
done more careless things but it made me realize like "WOW, it happened
to me and I don't want it to anymore!"

Two other underlying consequences that seem far removed are the ability to have a

child and possible cancer. Fourteen women expressed a desire to have children. Woman

K is past child-bearing age and Woman J has a son and anticipates having more children.

When she was pregnant she talked to her obstetrician about possible troubles with having

a history of HPV. She requested every type of STD screening including an HIV test. She

was not concerned about her husband being unfaithful but only wanted to insure her

offspring had a good start. The women who have had colposcopies are fearful of not

being able to conceive and carry children. This is a real fear but most felt they do not

dwell on this concern as they are not quite ready to have children yet.

The cancer scare was not a major issue with these women. They felt that all that

they have been through, including multiple repeat Pap smear testing and colposcopies,

make them have a sense of security in knowing that cancer will be detected early enough

to prevent it from being life threatening.

The last thematic group that emerged from the interviews was the ability to share

experiences of having HPV with others. This is divided due to a change in interview

technique but still a valuable aspect of the essence of living with HPV.









Sharing Experiences with Others

The first nine interviews had a different flavor than the last seven interviews. As

mentioned earlier, my committee recommended that my interview technique be modified

and to ask fewer leading questions. Therefore, the last seven interviews lack data on

sharing experiences with others and the type of early sex education. They do contain the

overall lack of meaningful information and compassion received from their health care

providers. This supports findings of the American Social Health Association (ASHA) and

the CDC, which reported that more than 60% of individuals diagnosed with HPV felt the

service they received from their physicians upon the diagnosis was unsatisfactory

(ASHA, 2001; CDC 2002). Woman K described her treatment from her gynecologist:

Woman K: ... to have my GYN be embarrassed to tell me about it
[HPV]! I was kind of surprised! Looking back on it, not so surprised
really, because if I had ended up in an STD clinic at the health department,
(finger snap) they give those diagnoses out everyday. He made me feel
real bad! I don't think he meant too but he did. He made me feel kind of
cheap and I don't think he meant to but I felt that way. I felt like, women
like me do not get STDs! No! White college educated, fairly bright
women who are pretty savvy. But so that was probably was the most,
probably stood out the most about having it.

During the 18th International Conference on the Papillomavirus in Barcelona,

Spain, July 2000, Vezina and Steben (2001) presented psychosexual impacts of HPV.

One of the emotional reactions associated with being diagnosed with HPV was anger

toward their attending physician. The researchers mentioned that individuals who are

diagnosed with HPV expect their health care providers to supply them with requisite

medical care, and to display an attitude of openness and empathy, as well as to help them

deal with the psychosexual consequences of the disease. Health care providers need to

take time (either on the first visit or follow up visits) to ensure that the patients

understands the diagnosis and to answer any questions that come up following the mental









and emotional processing of the diagnoses. One woman mentioned how she felt on a

follow up visit, the nurse practitioner did not remember where the external lesions were

or how many. This made her feel like she was just a "patient" and that this life changing

diagnosis did not mean anything to the health care provider.

All the women in this study mentioned that they did not understand or comprehend

the initial diagnosis. This was probably partly due to defense mechanisms to protect the

self from bad news. This stress response coupled with the lack of information about what

the diagnosis means and what the future will bring hindered full understanding.

Practitioners need to be able to communicate the appropriate, accurate information at a

level that matches the individual's ability to comprehend and understand this disease and

all that it brings, to aid the healing process.

Women desire positive treatment from healthcare providers as this is a vulnerable

time; a seemingly small issue may do some major emotional damage. Vezina and Steben

(2001) listed a number of behaviors that HPV infected individuals' desire from the

healthcare provider. Respect without passing judgment, empathy, and open-mindedness

are the three most important. Other important behaviors include attention to what the

individual is saying not what the provider expects or anticipates they will say, availability

for follow up visits and questions, and clarity of information about the diagnosis.

Summary

Linguistic transformation is a method used to help clarify a lived event for

someone. It works through the process of first using a "normal discussion about the

experience to establish a base of what the world views as normal". Then it proceeds with

a view of how an individual views that event. Whether they feel it is normal or abnormal









is irrelevant. It is intended to augment the summary of findings as it helps understand the

essence of having HPV.

Haase (2002) uses linguistic transformation to help understand sameness in

differences. "Uncommon experiences are experiences with which most of us are not

familiar. The sighted person will never quite know what it is like to be blind... On first

sight it would seem impossible to 'really understand' what people experience who seem

so very different from us" (p. 61). An example is the description of a fictional typical

teenager, Jane, who has been sexually active for about a year but does not have HPV;

followed by a description of Women B's experience of having HPV.

Jane is 18 and a freshman in college and currently has a boy friend that
she has been intimate with over the past six months. They used condoms
but Jane feels she needs to get on the "pill" just to be on the safe side. She
has just seen her health care provider and everything was all right, at least
her doctor didn't say she saw anything wrong. A nurse told her about the
birth control pill and what to look for. Jane chats about her visit with her
boy friend and they go to a movie. Three weeks later Jane gets the
notification that her Pap smear was normal. She hadn't worried about it
because she is a "good" girl and she loves and trust her boyfriend. Only
loose and "bad" girls get STDs.

Woman B's experience with having HPV provokes emotion and thoughts. She has

had only three total partners and used protection totally with her first partner of three

years. When they broke up she was devastated and dated an individual twice and didn't

use protection either time. One year later she was diagnosed with HPV, CIN 3. She

mentioned a number of times that she wondered where she got this HPV as she has been

fairly careful and protected except for her second sexual encounter.

We had waited 9 months to sleep with each other, to be intimate pretty
much at all. And we were very careful, I went and got on birth control and
we always used protection, but he was away at college for two years. We
had a long distance relationship. So he couldn't take it any more and broke
up with me so I went through a brief self-destructive period. And I was
with somebody two times, the same person, unprotected. And now a year









later I was diagnosed with CIN 3. So I will always wonder where it came
from. I know for a fact that people will not believe you [that you are not
promiscuous] because people are cynical. But I know he was not with
anybody else. That doesn't mean you can't get things other places. My
mother also had it before they knew what it was and eventually had a
hysterectomy. My sister also has it. So maybe we are more genetically
more susceptible to it, or you never know but I probably ruined a year of
my life trying to figure out where I got it. Also, having to go back and tell
that one boy friend who we had been so careful, that you have HPV. We
had tried to get back together after that, I had to go and tell him that and he
acted like his sex life was over for the rest of his life. That made me... not
in a way to make me feel bad but I knew that he felt that way and it made
me feel "DIRTY"! And ashamed (voice reflected a solemn sound, almost
tearful, and emphasized the word dirty).

The five thematic groupings describing what it is like to have HPV have emerged

from in-depth interviews with these 15 women. The first thematic grouping was the

feelings within the experience of having HPV such as shame, guilt, contamination,

embarrassment, and the sense of feeling dirty. The second thematic grouping was fears

involved with disclosing the HPV infection to partners, family, and friends. The third

thematic grouping was what type of treatments occurred after the HPV diagnosis and

their experiences surrounding this event. The fourth thematic grouping was the process

of self-transformation which encompassed various input from spiritual, emotional,

psychological, social, and physical disciplines. The fifth thematic grouping involved the

openness of the women to share their experiences not only with the researcher but also

with others that find themselves in the same situation. This experience was truly

humbling as well as exciting. The information can be useful in multiple settings,

including education for health care providers and implications for nursing science, and

future research. The next chapter will expand upon these findings.















CHAPTER 5
DISCUSSION

Revisiting the interviews and transcriptions brings forth the thoughts and emotions

that were expressed by each woman during the course of this research. There is truly no

other way to "mine for the meaning" of what it is like to be diagnosed with HPV. During

the interviews, women often transformed their air of confidence to a demeanor packed

with guarded raw emotion, contributing to seeing the true lived experience or the essence

of having HPV. Their words and body language were congruent in expressing the

outcome. Nothing was "matter of fact," but there were underlying groups of thoughts that

make this study significant.

Human papillomavirus may just be a virus that can manifest itself during times of

stress or be self-limiting at other moments, but the unpredictability and the magnitude of

this virus make it a trigger for a life-altering course of events for an infected individual.

The diagnosis with HPV makes it difficult for both the infected individual, as well as the

health care provider. For the infected individual this diagnosis is life changing and needs

attention and education to minimize the impact. Cervical cancer was not as big an issue

with these women, even with the three women who were diagnosed with CIN 3. The

contributing factors for this were the age of the participants with a majority of them in

their 20's; they were healthy at the time of the interview (only one was currently

struggling with an outbreak of external warts), and cervical cancer seemed so far off

because most of the women realized that Pap smears could protect them from getting









cancer. However, the main concerns voiced by these women were how to cope with the

idea of having a sexually transmitted disease, how to prevent future ramifications of

infecting a partner, a future husband, an offspring, and whether they would be able to

have children.

Stigma of Having HPV

All participants were concerned with the stigma of STDs, regardless of cultural

background. Woman 0 did not react to her diagnosis of HPV, as she only understood it to

be "a female problem that needed watching." She found out that HPV is an STD during

the interview session, and once she comprehended that, she immediately responded with

repulsion of now having an STD. Sexually transmitted disease stigma seems universal no

matter what infection it is. However, how women deal with this stigma may vary

depending on the specific culture involved. Additionally it is closely tied to cultural

interpretations of gender. Nack (2002) mentions that it is more acceptable for a man to

have an STD; it is a sign of his power and ability to perform sexually. Women are

essential partners in sexual intercourse but there is a double standard levied upon them. A

woman is considered dirty, loose, and of lower class if she contracts an STD.

The stigma of HPV being an STD destroyed values and altered perceptions of self.

Many commented on "people like me do not get STDs; only sluts or loose women get

them." Rather their lives with HPV, is a self-metamorphosis or transformation from who

they were at diagnosis to who they are today and how they cope with HPV. This self-

transformation is significant in each woman as she comes to terms with having HPV and

deals with it in her way.









Self Transformation

Self transformation includes a sense of achieving a higher consciousness by having

a deeper appreciation of life, being closer to others, and having more meaningful

relationships. Not every woman in this study has reached this point but many have made

great strides in being in control of the events related to having HPV. Self-transformation

can be expressed as coming to grips with the issue of having HPV and changing one's

self. This change is not arbitrary but purposeful. The initial loss of one's self control or a

sense of powerlessness over her health mandates that the woman partner with her health

care provider, family, and trusted friends, in order to first comprehend the diagnosis of

HPV and then move toward regaining the self control over her health and life. Changes

occur with the moving through the diagnosis, the treatments, and emerging at a point

where the body, mind, and spirit are at peace with the current situation and control has

been restored within "self."

Most health care providers in the study failed in giving the women the information

they needed and wanted to make informed decisions about their treatments and future

ramifications. During the writing of this research it became apparent that the guidelines

and policies established by the American Cancer Society (ACS) contributed to providing

clear and accurate information to women.

New Guidelines/policy for Pap Smears

New guidelines for Pap smears have been developed by the ACS and endorsed by

many women's health organizations. These new standards can adversely affect a number

of women in this study. As mentioned in chapter one, the rationale for changing the

policy stemmed from attempting to do less harm in regards to testing and treating HPV in

young adolescent women due to the regression of the virus over a period of time. The









data on regression indicates that young women ages 13 to 22 infected with high-risk HPV

16 and 18 show a 70% spontaneous regression rate within three years and a 90%

regression rate of the low-risk HPV 6 and HPV 8 (Saslow et al., 2002). The time for a

high-risk type (CIN 2) lesion to progress to carcinoma in situ or cancer over the age of 51

is 70 to 80 months; women ages 26 to 50 progress in 41 to 42 months; and under 25

women progress in 54 to 60 months (Saslow et al., 2002). With these regression statistics,

a conservative estimate was used that covered all ages groups lead the ACS to adopt 41

months for Pap smear intervals and initiating Pap smears three years after first vaginal

intercourse. The upside to these policy changes is that they may prevent overdiagnosis

and treatments and possible cervical damage of the women who had LEEP or colposcopy

procedures which increase the risk of not being about to get pregnant or carry to term.

The downside to these changes is that they could increase the possibility of not catching

and treating for severe cervical dysplasia in time.

It is alarming that three of the women in this study had been diagnosed with

abnormal Paps, indicating severe cervical dysplasia with precancerous lesions (CIN 3) as

teens. This is a little suspicious as usually CIN 3, displaying precancerous cells on the

cervix occurs after being exposed for a number years, as previous mentioned (CDC,

2002; Saslow et al., 2002; Weber & Leone, 2005). Statistically speaking, using the new

guidelines, these women would not have been tested for 36 months. Since their first Pap

smear picked up the carcinoma in situ, hypothetically speaking, if these women would

have waited three years after first coitus, they might have developed cervical cancer.

Additionally, the American Cancer Society Pap smear guidelines do not address a

policy for a woman starting oral contraceptives. Woman L was diagnosed with CIN 3 at









age16 when she went into start oral contraceptives. There seems to be no specific

guidelines requiring a Pap smear prior to starting oral contraceptives (OCs), but in many

private family practice settings, it is a standard procedure to get a baseline Pap smear to

insure that the addition of an OC does not exacerbate an unknown condition. The ACS

indicated that what effect oral contraceptive use has on increasing cancer risk is unknown

and that further research needs to be conducted (ACS, 2005).

The fifteen women in this study poured out their feelings and emotions out while

relating what it was like for them to live with HPV. The internal growth that all the

women portrayed in changing and rearranging their life priorities was amazing but what

was most striking was the maturity level of the women in their early 20's. Three of the

young women had to make life-changing decisions due to the diagnosis of severe cervical

dysplasia (CIN 3). When Woman L's first Pap smear came back precancerous at 16, she

did not even understand the diagnosis. All she wanted was to be started on birth control

pills and she ended up requiring a LEEP procedure. Her fears six years later are not so

much concerning the possibility of having cancer but about bearing children.

The carefree sexual revolution for these women stopped, and doubts began about

new encounters, the potential of spreading HPV to future partners and husbands, and

what they would do if the HPV were to manifest it self again. Marked differences in the

ability to cope and change existed between the women who had external warts versus

women with hidden, internal cervical abnormalities. The physical and emotional scaring

left by HPV was higher in the women with external symptoms. Fear of being the one

who could be passing it on to others was emotional and thought provoking; as was the

fear of not being about to have children because of treatments or outbreaks. A positive









self-transformation occurred in most of the women, resulting in increased confidence and

optimistically looking forward to future events. Health care providers play a major role in

the ability of women to deal successfully with a HPV diagnosis. In the case of the women

in this study, they failed terribly. These women wanted better information from providers

and access to written material, which they considered important.

Implications for Nursing Research and Education

The nursing profession code of ethics states that nurses practice with compassion

and respect for the inherent dignity, worth, and uniqueness of every individual, regardless

of social or economic status or the nature of the problem (Katz & Hirsch, 2003). Nurses

are the mortar that holds many elements in health care together and can be major change

agents for women living with HPV. The women interviewed were not given proper care,

empathy, or respect. Most of them had to be aggressive in asking for answers, depended

on friends, or searched the internet for the information they needed. The best information

came from other women or the internet. Feelings and emotions described by these women

indicate a need for better strategies in caring for women living with HPV. The findings

presented here can be used to develop more sensitive and supportive protocols for current

health care providers to implement in the practice. The following are questions this

research has raised questions that need to be addressed particularly by health care

providers: 1) What do women diagnosed with HPV want and need from the health care

providers; 2) What information do health care providers need to effectively care for

women with HPV; and 3) How can health care providers support the process of self-

transformation which allows women to cope with their diagnosis?

The information and education needed in HPV care was summarized by Anhang,

Goodman, and Goldie (2004) who stated that the basic information desired by individuals









is transmission, prevention and detection, treatment, progression without treatment, and

risk of cervical cancer. In regards to transmission, women want to know that HPV is

sexually transmitted. This sounds basic but most of the women in this study did not know

that HPV was sexually transmitted until weeks to years after the diagnosis. Secondly,

they want to know exactly how transmission can occur and what they can do to prevent

or minimize the risks, including the risk of HIV/AIDS.

In this study women wanted to know the duration and frequency of HPV outbreaks,

whether the virus would always be present or if there might be a spontaneous resolution

of the infection. They wanted to know what their chances of getting cancer were, and

whether the Pap smear and follow-up treatments really prevent the development of cancer

(Anhang, Goodman, & Goldie, 2004).

According to Anhang, Goodman, and Goldie (2004), the information that needs to

be included in the educational portion of an HPV diagnosis should include the following

elements. The first inclusive element in education is the understanding of the different

types of low-risk and high-risk strains of HPV. This will allow women to make rational

decisions about their health care. The women in this study, once they knew it was an

STD and what to expect, could make choices about whether to have intercourse, whether

to disclose to a potential partner, or whether to be aggressive in their treatment.

The second education point is the likelihood of a woman with HPV developing

cervical cancer. Women really want to know and understand the characteristics of HPV,

including the fact that HPV does regress even without treatment but that in some cases it

can come back as cervical cancer. Not telling them or sugar coating the risks does not

help in their decision making endeavors.









The third educational point is to explain how Pap smear results can be normal, but

they will still have HPV. A more specific explanation of what the Pap smear really does

and how it relates to HPV would be helpful. The research on HPV and its treatment and

outcomes is a fast-moving field of study, therefore, educational approaches also need to

be continuously updated and further supported by continuing research. This would avoid

the problems encountered by the women in this study, who received information that was

vague, outdated and useless or simple received no information. Several women in this

research enrolled in elective college classes on human sexuality to better understand

HPV. They also searched for answers through "dorm" talk, friends, or the internet. The

proper course of action after a HPV diagnosis is to schedule a follow-up appointment

within the next two weeks for a time for counseling and educating. This time lapse will

allow the woman to seek advice from friends, family; others with the same diagnosis, or

the internet and then come back to the office with more specific questions. The

information needs to be as factual as possible as women are making health care choices

based on it.

Future Research

Research needs to be ongoing in diagnosis, treatment, and prevention. With the

inception of liquid cytology the ability to test for HPV after indications of an abnormal

pap has really helped in the diagnosis element of this virus. Current technology

development goals included better home HPV tests so women can be proactive in their

health (Anhang, Goodman, & Goldie, 2004). A vaccine to prevent HPV transitioning into

cancer is close to completing the clinical trails and it hopeful for preventing new

infections as well as minimizing reoccurring episodes in the future. After two and one

half years of follow-up, the vaccine has blocked about 90% of 4 genotypes (HPV 6, 11,









16 and 18) of HPV. These outstanding results indicate that none of the vaccine recipients

developed cervical cancer, precancerous lesions or genital wart related to the 4 genotypes

mentioned (Johnson, 2005). Tracking the effectiveness of the HPV vaccine over time as

well as compliance of individuals to get a 3-year booster could be future nursing

research.

Additionally, the HPV vaccine will help reduce many of the emotional and physical

problems seen in this research but new problems are on the horizon related to when to

start the vaccine, who will get it, whether there be a compliance problem with the three

year boosters, and parental concerns of vaccinating their child against an STD when in

fact they may be in denial that their child may be sexually active. Once the vaccine is

presented to the public I envision multiple longitudinal studies on its effects over time

will be needed.

Another area for future research is the investigation into the possibility of mother to

child transmission of HPV in-utero. Although there were only 15 participants in this

study, three of the women had been diagnosed with abnormal Paps indicating severe

cervical dysplasia with precancerous lesions (CIN3). All three had a fairly low number of

partners before first diagnosis of HPV. In fact, two of the women were diagnosed with

CIN 3 on their first Pap smear, which was within one year of first coitus and each only

had one partner. This is a little suspicious as usually CIN 3, displaying precancerous cells

on the cervix occurs after being exposed for a number of years, as previously mentioned

(CDC, 2002; Saslow et al., 2002; Weber & Leone, 2005). Two of these women had

mothers that had HPV and the other woman was unsure of her mother's history as she

had lived with her grandmother. Future research may shed light on the passage of HPV









from mother to daughter, although currently much of the research indicates that there is a

very low transmission from mother to baby during the birth process (Genuis & Genuis,

2003). Even with the introduction of the HPV vaccine, there maybe indications for future

research on various ways to pass the cancerous genotype on to unsuspecting offspring.

An interesting possibility for this researcher would be to investigate the possible

transmission of HPV in-utero via the placenta or genetically.

Summary

The goal of this study was to grasp the true meaning or essence of the experience of

living with HPV. The essence of having HPV was uncovered by recounting the feelings

upon learning of the diagnosis; noting changes over time in personal growth; the

experience of disclosing the diagnosis to others and what these experiences meant and the

fears related to telling others. Further enlightenment came from discovery of what each

woman did about the experience, the transformation and changing behavior after learning

the diagnosis, and the willingness to share these lived experiences with others with the

hope of helping other women deal with the disease. A significant finding throughout this

work is that women who have been diagnosed with HPV have the ability to grasp the

illness, process the physiological, psychological and social aspects that all come with the

diagnosis, and go through some form of self-transformation in order to become "self'

again thus leading to a new life, what ever that means individually. Self-transformation is

essential in this quest to become the "new self."

Additionally a true partnership is needed between the HPV infected individual and

the health care practitioner. Improved communication between health care providers and

their clients with HPV would better support women's efforts to cope with this diagnosis.















APPENDIX A
ADVERTISEMENT FLYER AND NEWSPAPER AD















Women participants wanted for research

involving lived experience with

Human Papillomavirus (HPV):

*Women must be 18 years of age or older
Women must be diagnosed with
HPV more than 1 year

For more information contact:
Susan Porterfield: Phone: 850-385-5343
Cell: 850-459-7778
**This health care facility is not sponsoring this research















APPENDIX B
DEMOGRAPHIC AND INTERVIEW GUIDE









Demographic and Interview Guide


Demographics:
-Age Ethnicity
-Marital/Relationship Status ; Children
-Type of employment
-Education (number of years and degrees)
-When did you first get diagnosed with HPV?
-What type of treatments if any have you had?
-Current health status?

Interview Guide for the lived experience of HPV in women

I am doing a research study on women's experience of living with HPV from when
they were diagnosed to the present time.

1. Tell me about yourself and your experience with HPV?

2. What happened when you were told you had HPV?

3. How did you feel
-Did this have any affect on your relationships?

4. Has having HPV changed your life? Could you please explain how?

5. What things or actions have been most helpful to you during this experience with
HPV?

6. If you could change anything about what has happened, differently what would it
be?

7. Do you have any advice for other women?














APPENDIX C
INFORMED CONSENT INDIVIDUAL INTERVIEWS









Informed Consent Individual Interviews


Protocol Title: Women's Lived Experience with Human Papillomavirus

Please read this consent document carefully before you decide to participate in this
study.

Purpose of the research study:

The purpose of this study is to learn more about your life experiences of living with
HPV/genital warts. Having HPV has become a common problem and there is little known
about how to help women deal with this problem.
What you will be asked to do in this study:

You will be invited to participate in this study if you are a woman 18 years of age or
older and have been told that you have HPV or genital warts more than one year ago. If
you choose to be in this study, you will be asked questions about your life experiences of
having HPV including: what happened when you were told you had HPV; what effect, if
any, has having HPV had on your relationships; has your life changed since being
diagnosed with HPV; and was there anything special that happened that helped you with
your experience with HPV. You will be asked not to use any names of health care
providers or institutions during the interview. The primary investigator, Susan
Porterfield, will audiotape interviews. You will be asked to take part in two interviews
about 2 weeks apart.
Time required:

Each interview will take approximately 1 to 2 hours.

Risks and Benefits:

There are no direct benefits for being in this study; however information you provide may
help other women deal with their diagnosis in a positive manner. Additionally, health
care providers may benefit from the information shared by being better able to manage
other women who develop the same problem.
Compensation:

There will be no monetary compensation for participation in this study, however a copy
of Gift from the Sea by Anne Morrow Lindbergh will be given as a thank you gift for
taking part in this study.

Confidentiality:

Your confidentiality will be protected to the extent provided by law. Your name will not
be used. You will be assigned an identifying number or code name, which will be used on
all tapes and written reports of the interview. Tapes and written reports will be kept in a
locked file cabinet in Susan Porterfield's university office. All tapes of interviews will be









destroyed in accordance to the University of Florida policy at the completion of this
study. If Ms. Porterfield publishes or presents at scientific meetings or in scientific
publications, no identifying information will be used.

Voluntary participation:

Being in this study is completely voluntary. There is no penalty for not participating.

Right to withdraw from the study:

You have the right to withdraw from the study at anytime.

Whom to contact if you have questions about the study:

Susan Porterfield, PhDc, ARNP
1813 Wales Dr.
Tallahassee, FL 32303
Telephone: 850-385-5343; cell: 850-459-7778
Fax: 850-385-5343 (with prior notification); email: suearnp@yahoo.com

Whom to contact about your rights as a research participant in the study:

UFIRB Office, Box 112250, University of Florida, Gainesville, FL 32611-2250;
Telephone (352) 392-0433

Agreement:

First Interview:

I have read the procedure described above. I voluntarily agree to participate in the
procedure and I have received a copy of this description.

Participant: Date:

Principal Investigator: Date:

Second Interview:

Participant: Date:


Principal Investigator:


Date:















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