Medical Anthropology

Cross-Cultural Studies in Health and Illness

ISSN: 0145-9740 (Print) 1545-5882 (Online) Journal homepage: https://www.tandfonline.com/loi/gmea20

Social Representations of Human Papillomavirus

in Bogotá, Colombia

Carolina Wiesner , Jesús Acosta , Adriana Díaz del Castillo & Sandra Tovar

To cite this article: Carolina Wiesner , Jesús Acosta , Adriana Díaz del Castillo & Sandra
Tovar (2012) Social Representations of Human Papillomavirus in Bogotá, Colombia, Medical
Anthropology, 31:1, 77-92, DOI: 10.1080/01459740.2011.633947

To link to this article: https://doi.org/10.1080/01459740.2011.633947

Published online: 30 Jan 2012.

Submit your article to this journal

Article views: 324

View related articles

Citing articles: 1 View citing articles

Full Terms & Conditions of access and use can be found at

https://www.tandfonline.com/action/journalInformation?journalCode=gmea20
Medical Anthropology, 31: 77–92
Copyright # 2012 Taylor & Francis Group, LLC
ISSN: 0145-9740 print/1545-5882 online
DOI: 10.1080/01459740.2011.633947

Social Representations of Human Papillomavirus

in Bogotá, Colombia

Carolina Wiesner
Colombian National Cancer Institute and Universidad Externado de Colombia,
Bogotá, Colombia
Jesús Acosta, Adriana Dı́az del Castillo, and Sandra Tovar
Colombian National Cancer Institute, Bogotá, Colombia

Identifying DNA of Human papillomavirus (HPV) has been proposed as a new screening method for
cervical cancer control. Conventionally, health education for screening programs is based on scien-
tific information without considering any community cognitive processes. We examine HPV social
representations of 124 men and women from diverse educational status living in Bogotá, Colombia.
The social representation of HPV involves a series of figurative nuclei derived from meanings linked
to scientific information. While women focused on symbols associated to contagion, men focused on
its venereal character. Figurative nuclei also included long-term uncertainty, need or urgent treat-
ment, and feelings of imminent death associated with cancer and chronic sexually transmitted infec-
tions. The social representation of HPV impeded many participants from clearly understanding
written information about HPV transmission, clearance, and cancer risk; they are built into a frame-
work of values, which must be deconstructed to allow women full participation in HPV screening
programs.

Keywords cervical screening, Colombia, Human papillomavirus, social representations

Cervical cancer remains the second most common cancer in women worldwide, even though
screening with cervical cytologic testing (Pap test) has been available for more than 50 years
(Kitchener, Castle, and Cox 2006). Approximately 500,000 cases of invasive cervical cancer
are diagnosed globally each year. The majority of cases are in developing countries (Ferlay,

CAROLINA WIESNER is a medical researcher in public health at the Colombian National Cancer Institute and Professor
at the Faculty of Social Sciences at the Externado de Colombia University in Bogotá, Colombia. JESÚS ACOSTA is a
gynecological oncologist at the Colombian National Cancer Institute. His interests include research in cervical cancer
control. ADRIANA DÍAZ DEL CASTILLO is a medical anthropologist and an associate researcher in the School of Medicine,
Universidad de los Andes, Bogotá, Colombia. She was affiliated with the Colombian National Cancer Institute during
this work. She has conducted research on people’s experiences with living with chronic illness, the role of medicine
in shaping those experiences, and the interplay between urban environments, well-being, and health. SANDRA TOVAR is
a nurse and a researcher in the field of cervical cancer control with the Colombian National Cancer Institute. Her interests
include health education and management of cervical cancer screening programs.
Address correspondence to Carolina Wiesner, Universidad Externado de Colombia, Instituto Nacional de Cancero-
logı́a, Calle 1 No. 9-85, Bogotá, Colombia. E-mail: cwiesner@cancer.gov.co
78 C. WIESNER ET AL.

Pisani, and Parkin 2004), where effective screening programs for cervical cancer are exceptional
and where there has been no clinically significant reduction in the incidence of mortality in the
past three decades (Kitchener et al. 2006).
Infection with high-risk types of human papillomavirus (HPV) is the major cause of cervical
cancer (Mu~ noz, Castellsagué, and Gissmann 2006). This is the most common sexually trans-
mitted infection worldwide; it has been estimated that HPV infection among women who had pre-
viously tested negative reaches 60% over a five-year follow-up period (Baseman and Koutsky
2005). HPV 16 and HPV 18 are the most common types, and these contribute to 50%–55% of
invasive cervical cancer. HPV exposure also accounts for 20%–25% of oral cancers and increases
the risk of anal cancer (Parkin and Bray 2006). Not all virotypes are carcinogenic, however: HPV
6 and HPV 11 cause genital warts that are benign lesions (Charles, Gafni, and Whelan 1997).
Epidemiological and natural history studies have contributed important information on HPV
in women. Infection in women younger than 30 years is transient among the majority; in older
women, it may be more persistent (Bosch et al. 2008). Possible explanations for this difference
include selection of persistent infections, decrease in immune response, hormonal changes, and
specific lifestyle characteristics of older women or their sexual partners (Molano et al. 2003).
Many women with transient infections develop cytological abnormalities, such as low squamous
intraepithelial lesions, which have a high rate of spontaneous regression (clearance) in the
absence of treatment. HPV infection does not require treatment under management consensus
guidelines. However, women with persistent high-risk types of HPV infection may develop high
squamous intraepithelial lesions and carcinoma in situ, and this may need to be treated.
In recent decades, effective new strategies for cervical cancer control have been identified: the
development and introduction of HPV vaccines and the use of HPV DNA testing as a cervical
cancer screening tool (Gravitt et al. 2008). In most low- and middle-income level nations, such
as Colombia, these vaccines are available but are not included in standard government-supported
vaccination programs. Gaps in knowledge, cost, and limits to delivery infrastructure are signifi-
cant obstacles for the widespread introduction of HPV vaccines (Andrus et al. 2008).
The poor sensitivity of the Pap smear used for standard screening for cervical cancer has gen-
erated substantial interest in HPV DNA testing (Franco 2003). HPV testing alone appears to be
more sensitive than conventional cytology among women 30 to 60 years (Ronco et al. 2006).
The introduction of the HPV-DNA test is regarded as a technological innovation that identifies
a virus that can be considered both ‘‘normal’’—since most sexually active people become
infected, at least transitorily, at some moment in their lives—and ‘‘potentially malignant,’’ since
its persistence can cause cancer. Consequently, as Webster (2002:443–457) observed, in terms
of screening, the HPV-DNA test has begun to widen the gap between what is considered normal
and what is considered pathological. These issues are at the core of surveillance medicine: test-
ing for HPV leads to the identification of ‘‘patients without symptoms,’’ whom Webster referred
to as the ‘‘worried healthy’’—those who must deal with the inherent ambiguities related to the
concepts of risk and probability. This conceptual identification needs to be understood in bio-
logical as well as social terms, since HPV testing intrudes on the intimacy of asymptomatic sexu-
ally active couples aged 30 to 65 years (Meijer et al. 2009).
Particularly in highly industrialized countries, qualitative studies on HPV-DNA testing have
shown that when questioned about possible infection, women manifest adverse feelings related
to stigmatization, and anxiety and preoccupation toward their sexual partners (Clarke et al. 1996;
da Silva Marquez Ferreira and Gimenez 2005; Kahn et al. 2005; Maissi et al. 2004; McCaffery
 SOCIAL REPRESENTATIONS OF HPV IN COLOMBIA 79

et al. 2006; Waller, Marlow, and Wardle 2007; Waller, McCaffery et al. 2007; Wright et al.
2004). In an effort to overcome some of the anxiety and psychological distress often experienced
upon HPV diagnosis and during the period of management, particularly for participants in HPV
screening programs, mass education must accompany screening protocols.
Until the mid-twentieth century, physicians held to the beneficence principle, which allowed
them to make therapeutic decisions without giving much credence to patients’ opinions and
values. The principle, as defined in the Encyclopedia of Bioethics, leads to paternalism, whereby
the ‘‘beneficent actor overrides or ignores the recipient’s ideas of good and imposes his or her
own’’ (Post 2004). In contrast, new trends in health education and patients’ rights tend to view
the physician-patient relationship as one of equal actors in the medical encounter (Jones 2002).
Shared decision making is an innovative educational model that promotes patient autonomy and
interactions that support equality between patients and physicians (Charles et al. 1997). Since
HPV is a new scientific concept, it has created a new opportunity for shared decision making
between physicians and asymptomatic women, because their medical encounters must deal with
the communication of risk as well as values and personal beliefs.
Social representations are cognitive structures formed through shared knowledge, value
systems, ideas, and practices (Moscovici 1984). This concept plays a pertinent role in HPV
screening as it reveals how collective consciousness transcends individual consciousness. There-
fore, it is important to analyze the sexual symbolism and the risks associated with this test when
given to healthy women.
Colombia has one of the highest incidences of cervical cancer in the world (age-standardized
rate, 34.4=100,000; Ferlay et al. 2004). Here, as in most countries, the age-specific incidence
curve for high-risk types is bimodal and the incidence of low-risk types gradually decreased with
age (Franceschi et al. 2006). Based on a systematic literature review, a consensus workshop, and
an economic evaluation, the Colombian National Cancer Institute recommended HPV testing as
an optimal screening strategy to be implemented in demonstration areas in Colombia (Instituto
Nacional de Cancerologı́a 2007). In preparing for this process, it is necessary to design and
develop an educational strategy targeting both physicians and women to ensure participation
in screening programs and to prevent psychosocial adverse effects. In this article we describe
how HPV is constructed within social interactions between men and women older than 25 years
living in Bogotá, Colombia.

METHODS AND MATERIALS

The qualitative study on which this article is based was approved by the Ethics Review Board of
the National Cancer Institute of Colombia. Social representations emerge through symbolic
interaction (Philogène and Deaux 2001), and accordingly, this study was based on this theoreti-
cal framework with three basic premises: (1) Individuals act on things according to the meanings
they ascribe to them; (2) the meanings of things are constructed in social interaction; and (3)
meanings are handled and transformed through an interpretive process (Blumer 1986).
Men and women older than 25 years were invited to participate in the research project, with
focus groups used as the main data collection method to tap into everyday forms of communi-
cation including jokes, arguments, and prejudices. Focus groups are also appropriate when
researching sensitive and taboo topics such sexual behavior ‘‘because the less inhibited members
80 C. WIESNER ET AL.

of the group break the ice for shyer participants’’ (Kitzinger 1995:300). Focus groups have a
particular weakness because they preclude explorations of individual experiences, and for this
reason some individual experiences were analyzed prior to this study, helping to shape the ques-
tion lines in the discussions (Wiesner 2009).
Participants were selected using a theoretical population sample (Glaser 2004). McCaffery
and colleagues (2006) argued that marital status and social and cultural norms toward sexual
relations play an important role in how individuals react to the HPV test and its results, and
consequently, the following question oriented the sampling: Does marital status, gender, edu-
cational level, or religious affiliation affect the outcome of the social representations of the
HPV test? Educational attainment and religious affiliation were included as both may determine
social and cultural norms toward sexual relations.
Participants were recruited from the private business sector, educational institutions, community
action governing boards, and religious organizations. Permission was requested from those institu-
tions to allow us to invite their professional and nonprofessional staff to participate in the study.
Other recruiting strategies such as contact by telephone or mail were not used, because in Colombia
people usually avoid giving personal details to strangers. The snowball strategy (Patton 2002) was
used as an additional recruiting technique because several participants expressed interest in refer-
ring some of their acquaintances for future sessions. Both men and women were contacted first by a
member of the research group who explained the objectives of the project. Those interested in par-
ticipating were then included in a preliminary list, which was later reviewed to select participants
intentionally to represent various educational and marital backgrounds. Selected participants
received a written invitation followed by a telephone call to confirm attendance.
Given that previous studies (McCaffery et al. 2006) have found HPV-DNA testing to be a
sensitive topic related to sexual experiences, we considered it appropriate to organize separate
groups by gender. However, after exhausting certain topics (i.e., the association with cancer
and sexually transmitted infections) in gender-specific groups, three mixed gender groups were
organized to broaden discussion on emergent categories and the associated meanings attached to
HPV scientific information. Groups were also separated according to educational background to
ensure that no participant would feel marginalized during discussions.
To create debate and because of the limited public knowledge about HPV (Klug, Hukelman,
and Blettner 2008), each participant received basic information on HPV and the HPV test before
the discussion groups began. Women with primary education only received a descriptive photo
novel (Instituto Nacional de Cancerologı́a 2007), and men and women with secondary or higher
education received an informative written text. These two documents were designed by the
gynecologist researcher (Jesús Acosta), who took into account scientific information that is
usually provided during a clinical encounter. The following topics were included: explanations
of high and low risk HPV, transmission, prevalence, clearance, HPV as cancer risk, and indica-
tions for HPV testing.
To stimulate discussion in individual focus groups, the coordinator talked about four women
who had gone through the HPV testing process: two women with negative and two women with
positive results (Wiesner 2009). All four had been asked about the following: (1) the initial
explanations given to them by their physicians, (2) their personal reactions to HPV testing
and its results, and (3) what kind of additional information they would have liked to have had.
Twelve focus groups were conducted from April to October 2008: six with low education
level participants (three women only, two men only, and one mixed); four focus groups with
 SOCIAL REPRESENTATIONS OF HPV IN COLOMBIA 81

high education level participants (one woman only, one man only, and two mixed), and two
mixed focus groups. A total of 124 people participated in the focus groups: 63% women,
37% men; average participant age was 41 years (Table 1).
Each focus group session, lasting approximately two hours, was conducted in Spanish by a
member of the research group, with a second researcher keeping note of how many times each
member of the group spoke up during discussions. This frequency register was later compared
to participants’ social demographic data (age, marital status, gender, religion). At the end of each
session, the discussions were summarized, and this was followed by a question and answer period.
To ensure data were archived, each session was taped on both a digital and a magnetic tape recorder
and was then transcribed verbatim. Confidentiality was guaranteed, and participants provided ver-
bal and written consent. Atlas-ti software was used for data management and analysis, as follows:
1. Content analysis of each focus group was performed after transcription. Each
researcher coded the transcript and attached memos, notations, and theoretical

TABLE 1
Demographic Data of Focus Group Participants

Women Men Total

Sociodemographic variables n % n % n %

Gender 78 62.9 46 37.1 124 100.0

Age (years old)
25–35 23 29.5 26 56.5 49 39.5
36–45 23 29.5 10 21.7 33 26.6
46–55 21 26.9 8 17.4 29 23.4
> 55 11 14.1 2 4.3 13 10.5
Marital status
Single 20 25.6 23 50 43 34.7
Married=cohabitation 43 55.1 19 41.3 62 50.0
Separated 10 12.8 4 8.7 14 11.3
Widow=widower 5 6.4 0 0.0 5 4.0
Education
Primary 18 23.1 3 6.5 21 16.9
High school=vocational 38 48.7 23 50.0 61 49.2
University 16 20.5 14 30.4 30 24.2
Post graduate 6 7.7 6 13.0 12 9.7
Occupation
Homemaker 13 16.7 0 0 13 10.5
Student 2 2.6 1 2.2 3 2.4
Employee 46 59 25 54.3 71 57.3
Self-employed 15 19.2 17 37 32 25.8
Unemployed 1 1.3 2 4.3 3 2.4
Retired 1 1.3 1 2.2 2 1.6
Health plan
Subsidized 8 10.3 1 2.2 9 7.3
Private 67 85.9 42 91.3 109 87.9
Government welfare 3 3.8 3 6.5 6 4.8
Religion
82 C. WIESNER ET AL.

references to transcripts. Subsequent discussions among the researchers clarified cod-

ing decisions and re-categorization as needed. Relationships were fixed among cate-
gories that would serve as guides for future information gathering. This meant that
questions were refined according to the preliminary findings of the first focus groups,
and this refinement then set the norm for subsequent sessions.
2. Two analytical methods were performed. Information source analysis and the graphic
analysis of significants were identified as analytical techniques to study social repre-
sentations (Mora 2002). The former analyzes the sources of information used by indi-
viduals. The latter identifies the most relevant significants (subject and predicate)
according to the order in which they are mentioned by participants and the number
of times they are brought up. The relationships among them are illustrated graphi-
cally, using arrows to show the relationships among the varied original discourses.
This graphic depiction enables what has been termed, according to Mora, ‘‘the figu-
rative nucleus,’’ defined as ‘‘an image structure that reproduces a conceptual structure
in a visible manner’’ (2002:14). Special attention was paid to participant narratives
that contradicted the emerging explanations. We attempted to provide feasible expla-
nations for those contradictions based on previous studies and paying special atten-
tion to context. Independent interpretation was developed by investigators using
triangulation analysis (Denzin 2006).

RESULTS

The social representation of HPV in our study involved a series of figurative nuclei that arose
from associated meanings and feelings linked to scientific information delivered to participants
during discussion (Figure 1). These categories varied according to gender and sexual history, but
other factors, such as educational level, religious affiliation, occupation, and type of health
insurance, were not influential.

HPV as a Chronic Infection

A primary HPV representational component emerged when a majority of participants classified

HPV infection as a contagious disease (Table 2). The majority of female participants associated
having a dangerous infection with fear, suffering, and social rejection; images of contagion and
quarantine were often mentioned. Women believed that any infection would produce symp-
toms shortly after being contracted. They also appeared concerned with the idea of a chronic
asymptomatic infection, which was further aggravated by the knowledge that it could last over
a long time period. Female participants were worried about the idea of having sexual relation-
ships over this extensive time period while carrying an asymptomatic infection.

The ‘‘Normalcy’’ of the Infection

Debate was ignited when participants learned that physicians designate HPV as a ‘‘normal’’
infection because it is highly prevalent among women younger than 30 years, and so refrain
 SOCIAL REPRESENTATIONS OF HPV IN COLOMBIA 83

FIGURE 1 Social representations of HPV.

from HPV testing among young women (Table 3). Most participants expressed disbelief that a
sexually transmitted infection could ever be considered normal. But as the discussion went on,
many women concluded that learning that HPV is a common infection could reduce the moral
stigma and other negative reactions related to it.

Is HPV a Sexually Transmitted Infection or a Venereal Disease?

Reactions toward the sexual transmission of HPV—particularly among men—included associ-

ating it with ‘‘venereal disease,’’ thus implying promiscuity and ‘‘questionable behavior,’’ and
the consequent moral judgments and social rejection that surround such terms (Table 4).

TABLE 2
Textual Comments Related to HPV as an Infection

No. Comments Focus group

1 ‘‘Because it’s logical that that’s going to happen.. . . I’ve seen lots of cases in the Female, nonprofessional
neighborhood.. . . The first thing you hear is ‘wham’ . . . they slammed the door in
somebody’s face . . . and they don’t open it until they know what kind of
infection it is.’’
2 ‘‘The first thing I would ask a physician is how long the infection would last, when Female, nonprofessional
you would recover, and how long it would take to turn into cancer.’’
3 ‘‘First it was contagion. It means to me the end of sexual relations!, with my Female, professional
husband or with anybody.’’
4 ‘‘If a doctor tells me that I am HPV positive then I will have to tell to my future Female, professional
partners: I can’t have sexual relations.’’
84 C. WIESNER ET AL.

TABLE 3
Textual Comments on the Normality of the Infection

No. Comments Focus group

1 ‘‘When they say it’s normal . . . I mean when the doctor says ‘it’s normal’ it’s Female, professional
normal for promiscuous people?, but it’s not normal for somebody who leads life
with integrity . . . which is the ideal.’’
2 ‘‘. . . some of the information that should be provided . . . uh . . . informing how Female, professional
common it is . . . taking away the taboo . . . the taboo that surrounds sexually
transmitted disease . . . that causes shame and feelings of guilt . . . so it means
trying to provide clearer information on the one hand which is maybe . . . uh . . .
kinder, in a way . . . which would help to lift the taboo a little . . . so things could
be handled better . . . with better information . . . so a person can take a more
positive attitude.’’

Many women considered men to be responsible for transmitting the virus that causes cancer
in women. Men did not specifically blame women for the disease, preferring instead to talk in
general terms of the consequences of promiscuity. However, those few women who had a his-
tory of only one sexual partner were angrier with the idea of having been infected by their hus-
bands than were women who had had more than one sexual partner. Furthermore, many female
participants continued to be confused about contagion, fearing, for example, that even toilet seats
could be a cause of transmission. These apprehensions persisted even though written information

TABLE 4
Textual Comments on HPV as a Sexually Transmitted Infection or Venereal Disease

No Comments Focus group

1 ‘‘We have a very vague idea about what a venereal disease is. STDs are very Male, professional
serious. I do not think the situation would be the same if this disease were
transmitted by sneezing. It has to do with the intimate relationship between a
couple, jealously plays a part, the relationship as a whole suffers. Feelings are
involved.’’
2 ‘‘ . . . well what I understand about the virus.. . . Nature gives it to men, and they Female, professional
transmit it to women, so it’s women who develop it.. . . The virus develops in us,
not in them.’’
3 ‘‘ . . . there’s another thing we touched on in the group . . . and that’s . . . uh . . . Male, nonprofessional
promiscuity.. . . It’s a tough subject because in the final analysis it’s the source of
most of the problem . . . this contagious disease is caused by promiscuity.’’
4 ‘‘My husband is the only man I have ever had. If I were told that I am HPV positive Female, nonprofessional
I will blame only in my husband. I will divorce him; as she did.’’
5 ‘‘It’s an infection, and I’ve asked the doctor, ‘Doctor, what causes it?’ . . . Using Female, primary education
dirty bathrooms . . . sitting on warm toilet seats.. . . The doctor himself told
me so!’’
6 ‘‘I’d assume so.. . . I mean she must already be sick . . . because if it’s already in the Male, nonprofessional
organism.. . . I mean if you detect it, it’s because it’s in the organism . . . and you
assume that it’s time to do something about it.’’
7 ‘‘HIV is a disease that . . . ends up destroying a person.. . . It’s a deadly disease, like Male, professional
cancer.’’
 SOCIAL REPRESENTATIONS OF HPV IN COLOMBIA 85

on HPV, provided to participants prior to the focus group, clarified that it is a sexually trans-
mitted infection (STI).
Many participants found it difficult to differentiate between infection and disease, and regard-
less of their education, most struggled with the idea that an infection could exist without man-
ifesting symptoms. In an effort to understand this dichotomy, a minority drew analogy from
other viral infections (such as HIV), in which it is possible for a person to be a carrier and
not know it, and to not feel ill. However, this minority felt the problem was not so much the
asymptomatic nature of the infection but rather the general lack of knowledge about HPV.
HIV=AIDS is the most frequently mentioned STI prototype—one that causes substantial fear.
In addition to the common mode of transmission, both are understood to be potentially fatal.
They are also associated because of their similar acronyms. This similarity often came up in
focus group discussions when the seriousness of HPV was being discussed and in questions
about whether the two diseases were related.

The Symbolic Relationship between Cancer and Death

Although participants were given written information on HPV, the knowledge that HPV
infection increases the risk of cancer was interpreted as the same as already having cancer
(see Table 5). That is, the virus was often understood as being a dangerous and fatal disease,
and this precipitated thoughts of death, fear, anxiety, and sadness. The HPV information pro-
vided to them did not necessarily reduce this anxiety. In addition, the word ‘‘cancer’’ appears
to unleash a series of thoughts and images that distract from what a physician is trying to

TABLE 5
Textual Comments on the Symbolic Relationship of Cancer and Death

No Comments Focus group

1 ‘‘I would be sure that I was going to die . . . that’s the first thing that comes to Female, professional
mind . . . the process the virus goes through to become carcinogenic . . . the
repercussions it would have on my other vital organs . . . if it would be necessary
to have a hysterectomy . . . or other surgeries to stop it.. . . In my mind cancer is
something that if it’s not stopped in time, is deadly.’’
2 ‘‘When they said it probably causes cancer . . . well, for us anything related to Female, professional
cancer . . . that it’s going to cause cancer . . . even though the possibility may be
slight . . . it’s just the mention of the word cancer, and . . . ‘Oh, no . . . I’m going to
have cancer!’ ’’
3 ‘‘Besides there is a lot of misinformation out there.. . . The little information that is Male, professional
available (emphasis) is that sexually transmitted disease is very serious! . . . and
. . . well . . . they should all be treated adequately.’’
4 ‘‘I went through the experience of having that virus.. . . The doctor who treated me, Female, nonprofessional
well, during treatment chemo . . . or . . . radio . . . or something like that! . . . I don’t
know what it was! . . . Well, around that time, I got pregnant . . . and now I have a
beautiful little girl and the doctor told me that I needed to take her in for
check-ups . . . because of that virus . . .’’
5 ‘‘Another thing is . . . everybody talks about cervical cancer, but what about Male, professional
men.. . .What kind of test should we be given?’’
86 C. WIESNER ET AL.

TABLE 6
Textual Comments on Long-Term Uncertainty

No Comments Focus group

1 ‘‘On the one hand, what worries us is that it is a virus that cannot be treated . . . so it Female, professional
leaves you up in the air a little bit . . . when they tell you, ‘Look, you have the
virus but we have no idea if it will turn into cancer or not . . . so come back in 6
months or in 1 year’ . . . and since there is really no treatment . . . I mean you
already have it.. . . That’s what worries people.’’
2 ‘‘My husband should also have to go through treatment . . . I mean if I’m going to Female, nonprofessional
be cured . . . only to have him infect me again!’’

convey. The concept of risk also takes on special meaning when it is no longer simply an
abstraction but rather is personalized. Cancer is portrayed as a ‘‘slow developing disease,’’
that is, one that progresses through time. As an outcome of focus group participation, atten-
dees understood that HPV should be treated as soon as possible to prevent it developing into
cancer. But no treatment exists for HPV, and so its advance was inevitable. This created sig-
nificant concern among participants, particularly women who believed that they had been
treated when they were diagnosed with HPV. These women were anxious because they
had to deal with a potentially malignant virus. Standard medical procedure following notifi-
cation that a couple has an STI requires that STI knowledge be reviewed so that men who
also manifest symptoms are included in treatment. However, HPV cannot be treated; both
male and female focus group participants were concerned about the effects of the HPV virus
in men as well as women.

Long-Term Uncertainty

The absence of immediate treatment creates uncertainty that extends over a long period of time
and can only be resolved when a physician repeats the test or performs a cytological examin-
ation. Contemplating the future means confronting concerns about the effects of HPV and its
contagious and progressive character. Fear of infecting their current or future sexual partners
in particular may affect women’s daily lives and sexual relations. The uncertainty of going from
‘‘I am not sick’’ to ‘‘I could be sick’’ is further aggravated by physicians who recommend fre-
quent Pap smears to monitor and search for lesions (see Table 6).

DISCUSSION

Colombia is the most heavily populated in the Andean region, with a diverse population (mes-
tizaje) of Native Americans, African descendants, and European—mostly Spanish—colonists.
This racial multiplicity has determined the historical bases of the distribution of social identities
and stratification, characterized by hierarchical and unequal relationships. In general, the descen-
dants of European mestizos have the highest levels of education, economic opportunities, and
social success, and align their values and interests with North American and European models.
In this project, focus group participants were drawn from different strata among the mestizo
population (European and non-European) with different levels of education. However, it was
 SOCIAL REPRESENTATIONS OF HPV IN COLOMBIA 87

clear that social representations of HPV were not related to levels of education but mainly to
gender differences.
Although participants had received written information on HPV clarifying that it is an STI,
most participants were confused by the scientific content of the information: about what consti-
tuted the key differences between infection and disease and about the sources of contagion. Part-
icipants understood that infections were represented as contamination in the human body; as
foreign agents detrimental to the host. But the fact that HPV is an infection but not a disease
seemed to be an unintelligible concept for participants (cf. its use in public health discourse,
Manderson and Smith-Morris 2010); they found it difficult to comprehend the complexity of
HPV as a chronic infection.
There are relational implications of creating awareness that cervical cancer is intrinsically tied
to HPV as an STI. This is associated with prejudices and emotions including fear of contagion,
venereal disease, isolation, and imminent death, which in turn are related inextricably to cancer
and infectious disease. Confusion of the sources of contagion also persisted. STI creates fear of
easy contagion, and transmission anxieties by means that are not necessarily related to sex (Son-
tag 1990). The social representation of STI as a venereal disease (and so a result of promiscuity)
impeded many women in this study from accepting that HPV could not be transmitted by
indirect contact (e.g., from toilet seats). The stigma that infectious disease produces encompasses
avoiding both contact with the body of an infected person and with the objects and places with
which he or she comes into contact. In some cultures, contagion is associated with ‘‘impurity,’’
thus implying that societal norms have been transgressed.
Men in this study very directly associated HPV infection with venereal diseases. Venereal
disease has long been associated with sin, sexual deviance, divine punishment, immoral beha-
vior, and prostitution (Adler 1980; Obregón 2002; Quetél 1990). Due to social stigma, deaths
from syphilis historically were not recorded, and fictitious diagnoses were common to prevent
family offence. The 1936 Colombian Penal Code punished the transmission of venereal disease.
Prostitution, however, was dealt with ambiguously—a ‘‘necessary evil’’ that threatened Christian
morality and provided a ‘‘privileged vehicle’’ for the spread of syphilis and other venereal dis-
ease (Obregón 2002:161–186).
During the latter part of the twentieth century, in an effort to foster prevention and access to
treatment, the medical profession set out to eliminate the stigma, taboo, and blame associated
with venereal disease. Hence, the term venereal disease was changed to STI, including both clas-
sic ailments (syphilis, gonorrhea, soft chancre, inguinal granuloma, and venereal granuloma) and
others, such as genital condilomatosis. But, as Brandt (1988) pointed out, it is one thing to
change words and another to change attitudes. In this study, the announcement of the word
‘‘sexually transmitted infection’’ was sufficient for the historical background of venereal
diseases to become a reality, particularly in the minds of men.
In the case of HIV=AIDS, prevention has related to controlling the chain of infection among
sexual partners. Participants in this study stressed that ‘‘breaking the chain’’ is a responsibility
that falls not only on couples but on society as well. Other studies in Colombia, specifically
in Cartagena, a beach resort city on the northern coast of Colombia, point out that condom
use for HIV prevention allows the emergence of social and culture resistance that continuously
challenges HIV prevention and control in this city (Suárez 2008).
Gender perspective and reproductive history emerged as important background factors when
discussing the social representation of guilt, specifically guilt placed on HPV-infected women,
88 C. WIESNER ET AL.

who are presumed, like prostitutes, to be promiscuous. However, in this study, women parti-
cipants blamed men for transmitting HPV. The Colombian feminist movements that promote
human rights and mass media campaigns help to explain this change. As presented in the media,
men are portrayed as culpable HPV vectors (Castellsagué, Bosch, and Mu~noz 2003). In this
study, women with only one sexual partner were more likely to blame their husbands and to feel
more anger than women with more than one sexual partner.
Within educational strategies for HPV, communication risk must emphasize the normal
character of this infection, that is, its high prevalence and the high probability of its clearance.
As Waller, Marlow, and Wardle (2007:155–159) concluded, ‘‘normalizing’’ the infection
reduces stigma, shame, and anxiety. Nevertheless, women in this study found it contradictory
that HPV is simultaneously presented as something serious and as something very common.
According to Armstrong (1995), surveillance medicine problematizes the normal, through its
focus on risk and potential illness. HPV infection is not necessarily linked to the will of the indi-
vidual, nor does it necessarily produce disease, although it may do so in the future. For women,
this cognitive challenge generates a ‘‘long-term uncertainty’’ and a condition that generates
dependence on health services.
Surveillance medicine has become an essential part of health care services in modern socie-
ties; however, in the case of chronic disease, its impact has been slight. Control of chronic dis-
ease does not depend on controlling individual behavior as such but rather on public health
policies that guarantee adequate coverage (Marmot and Wilkinson 1999). The identification
of risk factors—especially for HPV—creates uncertainty as to ultimate outcome. To effectively
address this uncertainty, health services must be able to provide adequate responses. This
appears not to be the case in most Latin American health care services (Murillo et al. 2008); this
situation leads to an ethical dilemma wherein screening programs are initiated without first com-
plying with all the essential criteria such as access to diagnoses and treatment if necessary.
Various studies have revealed the tendency among some women, upon learning of the
relationship between cancer and HPV, to overestimate the risk of cancer, so accentuating feel-
ings of fear and anxiety (Clarke et al. 1996; da Silva Marquez Ferreira and Gimenez 2005; Kahn
et al. 2005; Maissi et al. 2004; Waller, Marlow, and Wardle 2007; Wardle, Pernet, and Stephens
1995). However, when they learn that there is a good possibility that their HPV infection will
reach clearance, their anxiety is greatly reduced.
Furthermore, as Kahn and colleagues (2005) found, despite the trauma brought on by HPV
testing, many women expressed positive feelings about having had the exam. This was generally
true among the women participants in our study, who often stated that HPV testing could
improve women’s lives by empowering them as patients, spouses, and partners, and by
encouraging them to use their HPV test results as a technique to monitor male behavior (Jepson
et al. 2005).
Knowledge among health care professionals of HPV social representations is a key element in
lessening the negative impact that HPV infection can have on the daily lives of sexually active
couples; it also contributes to effective decision making on HPV-DNA testing. As Mead pointed
out (1934), social space involves not only individual introspection but society itself. HPV social
representations are built into a framework of values that must be deconstructed in order to allow
women full participation in the HPV screening process.
When providing HPV information within a screening context, therefore, it is wise to take into
account the different figurative nuclei that constitute HPV social representations. In turn, this
 SOCIAL REPRESENTATIONS OF HPV IN COLOMBIA 89

promotes an educational strategy that adequately responds to the significance of HPV infection
for individuals. It is important to reveal those differences that men and women, with different
reproductive histories, give to HPV infection. Although physicians may adequately communi-
cate the public health implications of this infection, they must also approach related sociocultural
issues regarding prejudices and other symbolic meanings of HPV.
As stated by Anhang, Goodman, and Goldie (2004), shared decision making is a highly par-
ticipatory communication strategy that, when applied to HPV screening and diagnosis, allows
asymptomatic women to truly understand the social implications of HPV. Within this context,
it becomes possible to discuss and fully understand the benefits, risk limitations, and uncertain-
ties of taking the screen.

ACKNOWLEDGMENTS

We wish to extend special thanks to Hernando Salcedo for his contribution in gathering infor-
mation, and to all the participants from the private business sector, educational institutions,
governing boards, and community and religious organizations who accepted our invitation
to participate in this research. This project was financed by the National Cancer Institute of
Colombia and Externado de Colombia University.

REFERENCES

Adler, M. W.
1980 The terrible peril: A historical perspective on the venereal diseases. British Medical Journal 281(6234):
206–211.
Andrus, J. K., J. Sherris, J. W. Fitzsimmons, M. A. Kane, and M. T. Aguado
2008 Introduction of human papillomavirus vaccines into developing countries international strategies for funding
and procurement. Vaccine 26(suppl. 10):K87–K92.
Anhang, R., A. Goodman, and S. J. Goldie
2004 HPV communication: Review of Existing Research and Recommendations for Patient Education. CA: A
Cancer Journal for Clinicians 54:248–259.
Armstrong, D.
1995 The rise of surveillance medicine. Sociology of Health & Illness 17(3):393–404.
Baseman, J. G. and L. A. Koutsky
2005 The epidemiology of human papillomavirus infections. Journal of Clinical Virology 32(1):S16–S24.
Blumer, H.
1986 The methodological position of symbolic interactionism. In Symbolic Interactionism: Perspective and Method.
Berkeley: University of California Press.
Bosch, F. X., A. N. Burchell, M. Schiffman, A. R. Giuliano, S. de Sanjose, L. Bruni, G. Tortolero-Luna, S. K. Kjaer, and
N. Mu~ noz
2008 Epidemiology and natural history of human papillomavirus infections and type-specific implications in cervical
neoplasia. Vaccine 26(suppl. 10):K1–K16.
Brandt, A.
1988 AIDS in historical perspective: Four lessons from the history of sexually transmitted diseases. Epidemics
78(4):426–433.
Castellsagué, X., F. X. Bosch, and N. Mu~noz
2003 The male role in cervical cancer. Salud Pública Mexico 45(suppl. 3):S345–S353.
90 C. WIESNER ET AL.

Charles, C., A. Gafni, and T. Whelan

1997 Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social
Science & Medicine 44(5):681–692.
Clarke, P. C., D. N. Ebel, E. Catotti, and S. Stewart
1996 The psychosocial impact of human papillomavirus infection: Implications for health care providers. Inter-
national Journal of STD and AIDS 7:197–200.
da Silva Marquez Ferreira, M. L. and M. T. Gimenez
2005 Percepción de un grupo de mujeres acerca del hecho de ser portadoras del VPH. Ginecologı́a y Obstetricia de
México 73:531–536.
Denzin, N. K.
2006 Sociological Methods: A Sourcebook. Chicago: Aldine Transaction.
Ferlay, J., P. Pisani, and D. M. Parkin
2004 GLOBOCAN 2002. Cancer Incidence, Mortality and Prevalence Worldwide. (Version 2.0). IARC Cancer Base
No 5. Lyon, France: IARCPress.
Franceschi, S., R. Herrero, G. M. Clifford, P. J. Sniders, A. Arslan, P. T. Anh, F. X. Bosch, et al.
2006 Variations in the age-specific curves of human papillomavirus prevalence in women worldwide. International
Journal Cancer 119(11):2677–2684.
Franco, E. L.
2003 Primary screening of cervical cancer with human papillomavirus tests. Journal of the National Cancer Institute,
Monograph 31, Pp. 89–96. Bethesda, MD: US Department of Health and Human Services, Public Health
Service, National Institutes of Health.
Glaser, B.
2004 Remodelling grounded theory. Forum: Qualitative Social Research 5(2):1–17.
Gravitt, P. E, F. Coutlee, T. Ifner, J. W. Sellors, G. V. Quint, and C. M. Wheeler
2008 New technologies in cervical cancer screening. Vaccine 26S:K42–K52.
Instituto Nacional de Cancerologı́a
2006 Novelas de Amor: Destello de Amor. Pp. 1–20. Bogotá, Colombo: Instituto Nacional de Cancerologı́a.
———.
2007 Recomendaciones para la tamización de neoplasias del cuello uterino en mujeres sin antecedentes de patologı́a
cervical (preinvasora o invasora) en Colombia. Guı́a de Práctica Clı́nica No 3. Pp. 15–22. Bogotá, Colombo:
Legis S.A.
Jepson, R., J. Hewison, A. Thompson, and D. Weller
2005 How should we measure informed choice? The case of cancer screening. Journal of Medical Ethics 31:192–196.
Jones, K.
2002 Health promotion, health education, and public health. In Oxford Textbook of Public Health. R. Detels,
J. McEwen, R. Beaglehole and H. Tanaka, eds. Pp. 829–864. Oxford, UK: Oxford University Press.
Kahn, J. A., B. G. Slap, D. Bernstein, L. Kollar, A. M. Tissot, P. A. Hillard, and S. L. Rosenthal
2005 Psychological, behavioral, and interpersonal impact of human papillomavirus and Pap test results. Journal of
Women’s Health 14(7):650–659.
Kitchener, H. C., P. Castle, and T. Cox
2006 Chapter 7. Achievements and limitations of cervical cytology screening. Vaccine 24S:S3=63–S3=370.
Kitzinger, J.
1995 Qualitative research: Introducing focus groups. British Medical Journal 311:299–302.
Klug, S. J., M. Hukelman, and M. Blettner
2008 Knowledge about infection with Human papillomavirus: A systematic review. Preventive Medicine 46:87–98.
Manderson, L. and C. Smith-Morris, eds.
2010 Chronic Conditions, Fluid States. Chronicity and the Anthropology of Illness. New Brunswick, NJ: Rutgers
University Press.
Maissi, E., T. M. Marteau, M. Hankins, S. Moss, R. Legood, and A. Gray
2004 Psychological impact of human papillomavirus testing in women with borderline or mildly dyskaryotic cervical
smear test results: Cross sectional questionnaire study. British Medical Journal 328(7451):1293.
Marmot, M. and R. Wilkinson
1999 Social Determinants of Health. Oxford, UK: Oxford University Press.
 SOCIAL REPRESENTATIONS OF HPV IN COLOMBIA 91

McCaffery, K. J., J. Waller, J. Nazroo, and J. Wardle

2006 Social and psychological impact of HPV testing in cervical screening: A qualitative study. Sexually Transmitted
Infections 82(2):169–174.
Mead, G. H.
1934 Mind, Self, and Society. From the Standpoint of a Social Behaviorist. Chicago: University of Chicago
Press.
Meijer, C. J., J. Berkhof, P. E. Castle, A. T. Hesselink, E. L. Franco, G. Ronco, M. Arby, et al.
2009 Guidelines for Human papillomavirus DNA test requirements for primary cervical cancer screening in women
30 years and older. International Journal Cancer 124(3):516–520.
Molano, M., B. A. Van den, M. Plummer, E. Weiderpass, H. Posso, A. Arslan, C. J. Meijer, N. Munoz, and S. Franceschi
2003 Determinants of clearance of Human papillomavirus infections in Colombian women with normal cytology: A
population-based, 5-year follow-up study. American Journal of Epidemiology 158(5):486–494.
Mora, M.
2002 La teorı́a de las representaciones sociales de Serge Moscovici. Athenea Digital 2. http://antalya.uab.es/athenea/
num2/mora.pdf.
Moscovici, S.
1984 The phenomenon of social representations. In Social Representations. R. M. Farr and S. Moscovici, eds.
Pp. 3–69. Cambridge, UK: Cambridge University Press.
Mu~ noz, N., X. Castellsagué, and L. Gissmann
2006 HPV in the etiology of human cancer. Vaccine 24(suppl. 3):S3=1–S3=10.
Murillo, R., M. Almonte, A. Pereira, E. Ferrer, O. A. Gamboa, J. Jeronimo, and E. Lazcano-Ponce
2008 Cervical cancer screening programs in Latin America and the Caribbean. Vaccine 26(suppl. 11):L37–L48.
Obregón, D.
2002 Médicos, prostitución y enfermedades venéreas en Colombia. História, Ciências, Saúde- Manguinhos
9(suppl.):161–186.
Parkin, M. and F. Bray
2006 The burden of HPV-related cancers. Vaccine 24(suppl. 3):S3=11–S3=25.
Patton, M. Q.
2002 Qualitative Research and Evaluation Methods. Thousand Oaks, CA: Sage.
Philogène, G. and K. Deaux
2001 Introduction. In Representations of the Social: Bridging Theoretical Traditions. G. Philogène and K. Deaux,
eds. Pp. 3–7. Oxford, UK: Wiley-Blackwell.
Post, S. G. ed.
2004 Encyclopedia of Bioethics. 3rd ed. New York: Macmillan.
Quetél, C.
1990 The History of Syphilis. Baltimore, MD: Johns Hopkins University Press.
Ronco, G., N. Segnan, P. Giorgi-Rossi, M. Zappa, G. P. Casadei, F. Carozzi, P. D. Palma, et al.
2006 Human papillomavirus testing and liquid-based cytology: Results at recruitment from the new technologies for
cervical cancer randomized controlled trial. Journal of the National Cancer Institute 98(11):765–774.
Sontag, S.
1990 Illness as Metaphor and AIDS and Its Metaphors. New York: Picador.
Suárez, M. R., N. Ni~no, R. Sepulveda, and J. V. Vesga
2008 Risk perception and condom use in the sociocultural context of Cartagena-Colombia. Anthropology & Health
Journal 1:116–121.
Waller, J., L. A. V. Marlow, and J. Wardle
2007 The association between knowledge of HPV and feelings of stigma, shame and anxiety. Sexually Transmitted
Infections 83(2):155–159.
Waller, J., K. J. McCaffery, H. C. Kitchener, J. Nazroo, and J. Wardle
2007 Women’s experiences of repeated HPV testing in the context of cervical cancer screening: A qualitative study.
Psycho-Oncology 16:196–204.
Wardle, J., A. Pernet, and D. Stephens
1995 Psychological consequences of positive results in cervical cancer screening. Psychology & Health 10(3):
185–194.
92 C. WIESNER ET AL.

Webster, A.
2002 Innovative health technologies and the social: Redefining health, medicine and the body. Current Sociology
50(3):443–457.
Wiesner, C., J. Acosta, A. Dı́az del Castillo, S. Tovar-Murillo, and H. Salcedo-Fidalgo
2009 An exploratory study of the psychological and social effects of the Human papilloma virus test. Revista
Colombiana de Cancerologı́a 13(3):145–156.
Wright, T. C. Jr., M. Schiffman, D. Solomon, J. T. Cox, F. Garcı́a, S. Goldie, K. Hatch, K. L. Noller, N. Runowicz, and
D. Saslow
2004 Interim guidance for the use of human papillomavirus DNA testing as an adjunct to cervical cytology for
screening. Obstetrics & Gynecology 103(2):304–309.