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WOMEN' S LIVED EXPERIENCE WITH HUMAN PAPILLOMAVIRUS
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
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
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
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
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
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
LIST OF FIGURES
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
Susan Padham Porterfield
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.
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
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.
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
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
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 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.
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.
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
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.
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
hopes to identify themes of meaning from the ways that women have coped with this
disease and what they have learned from the process.
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
4.5 Locating experiential descriptions in
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
8. Attending to the speaking in language
9. Varying the examples
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
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.
--Personal experience "The Self"
--Reflection recorded in personal journal
--Obtaining experiential description: "The Experiencer"
--Description of others 'experiences with the phenomenon: "the Others"
--Locating experiential descriptions in literature:
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).
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.
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
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 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
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,
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
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.
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.
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
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
-Greater awareness of consequences of behavior
Sharing Experiences with Others
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
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
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
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
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
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
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
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
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
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
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
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
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
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.
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,
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.
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.
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
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 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.
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
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.
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.
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
**This health care facility is not sponsoring this research
DEMOGRAPHIC AND INTERVIEW GUIDE
Demographic and Interview Guide
-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
6. If you could change anything about what has happened, differently what would it
7. Do you have any advice for other women?
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
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.
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.
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.
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.
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: firstname.lastname@example.org
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
I have read the procedure described above. I voluntarily agree to participate in the
procedure and I have received a copy of this description.
Principal Investigator: Date:
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