Psychological Impact of HPV-related Diseases in Women
Human papillomavirus (HPV) infection is a prevalent disease worldwide. Consequences of HPV infection vary, depending on the infected individuals and the HPV genotype involved. Life-threatening consequences are not uncommon, and cervical cancer is a clear demonstration of the virus’s potency. While the incidence of cervical cancer is heavily concentrated on developing countries,1 the impact of HPV-related diseases on developed countries has not ceased. In the United States alone, HPV infections are the most common sexually transmitted disease with an estimated 5 million new cases being diagnosed in 2000 among young adults, incurring nearly US$3 billion in terms of direct medical costs.2 A multinational study involving 18,498 women showed that cervical HPV prevalence varied greatly geographically, ranging from the low of 1.6% in North Vietnam to the high of 27% in Nigeria. In general, HPV prevalence peaked among young, sexually active women and declined with age. In selected countries, however, a second peak was noted in women older than 55 years.3 The high prevalence of HPV-related diseases incurs a heavy burden on the healthcare systems of developed and developing countries alike, which renders HPV research and prevention a global public health imperative. On an individual level, the afflictions caused by HPV-related diseases go beyond that of physical suffering to affecting the psychological well-being of the infected. This is the focus of our paper.
Anogenital Human Papillomavirus
HPV is a heterogeneous group of viruses with over 120 subtypes. Transmission, manifestation and outcome differ among the various subtypes. For instance, HPV types 1 and 2 cause common skin warts that can be transmitted by social contact.4HPV type 16 infects the epithelial cells of the cervix and is largely transmitted by sex.5
And, still, there are other HPV types which do not seem to have any effect on humans.6
About 40 of the HPV subtypes primarily infect the anogenital epithelial surfaces2
and have drawn much research effort in the past decades owing to their high prevalence and oncogenic ability.
Anogenital HPV is predominantly transmitted by skin-to-skin genital contact, which renders it a sexually transmitted infection (STI). Most of the infections are transient in nature and resolve spontaneously. A major difference lies in the subtypes’ cancer-causing potential by which they can be further classified as high risk (hrHPV) or low risk (lrHPV).2 Currently, close to 15 hrHPV subtypes have been identified and were found to be associated with various genital cancers, such as cervical cancer, vulvar cancer and penile cancer,7 among which cervical cancer causes the greatest concern owing to its global heavy disease burden. Cervical cancer is the world’s second most common female cancer, afflicting millions of women each year. Persistent hrHPV infection is the necessary cause of cervical cancer, and infections by hrHPV types 16 and 18 are the most potent, accounting for approximately 70% of all cervical cancers.5 On the other hand, the majority of lrHPV infections are non–life-threatening and appear as benign genital warts.2
The commonalities and differences between hrHPV and lrHPV infections have implications in the psychological impact of a positive HPV diagnosis. The sexually transmitted nature of hrHPV and lrHPV infections elicits negative emotions among women typical of those being diagnosed with other STIs. The different clinical manifestations and potential outcomes, however, may indicate different predicaments in terms of nature and origin. External genital warts are non–life-threatening but the visible symptoms or the mere mention of the term warts with its long-standing negative connotation raises substantial concerns among women.8,9 On the contrary, hrHPV infection is generally asymptomatic. Yet, its potential for cancer induces worry and anxiety. Studies indicated that the confusion over the various subtypes of HPV, in particular between the wart-causing types and cancer-causing types, among the general public and even among healthcare professionals might exacerbate the public’s negative responses towards HPV infection.10–12 It has also been suggested that psychosocial findings on patients with genital warts might not be generalizable to those with asymptomatic HPV infection.13,14 Thus, it is important to bear in mind the heterogeneity of HPV infections and their varied presentations that may induce very different psychological reactions from women.
Psychological Impact of a Positive HPV Diagnosis
Stigma and Shame
A large part of the psychological distress of anogenital HPV infection arises from the sexually transmitted nature of the virus. Sex resides in an individual’s private domain. A positive diagnosis of HPV, like other STIs, exposes this private domain to light, constituting a source of threat in itself.15 Furthermore, the long-standing association of sexual health with morality across cultures infers that sexual diseases threaten to bring one’s moral condition under self and possibly public scrutiny.16–18The moral association was well illustrated in a large qualitative study in which 314 participants were asked what the term sexually transmitted disease reminded them of. The responses were overwhelmingly negative and judgemental, consisting of remarks such as ‘infidelity’, ‘promiscuity’, ‘guilt’ and ‘shame’.19
Stigma is a mark applied to individuals bearing a negative deviance to render them worthy of disrespectful treatment such as prejudice and discrimination from other people.20
In the face of a frightening situation, stigmatization includes categorizing the stigmatized into a distinctive social group, thus creating a situation of ‘them’—the deviants—versus ‘us’—the so-called normals. In so doing, the distinction that ‘them’ is different from ‘us’ gives the non-stigmatized a sense of protection from the threat.15
That HPV can be contracted by sex, a basic human instinct, is psychologically threatening to all alike and generates anxiety for one’s own vulnerability. Stigmatization, despite being maladaptive in general, is one way of coping with this threat. To the extent that the act of sex is voluntary, individuals with an STI are assumed to be responsible for their condition, which supports the formation of other negative stereotypic characteristics about the stigmatized individuals.21 Given the negative moral connotations associated with STI, women with HPV risk being labelled as promiscuous or immoral and classified into a ‘them’ group denoting moral corruption. Both qualitative and quantitative studies on females of different ages and various ethnic backgrounds consistently showed that anticipated stigma was a common concern towards a positive HPV diagnosis.9,12,22–25
On a social level, the invisibility of an existing HPV infection constitutes a concealable stigma that will prompt the bearer to keep his or her condition from being discovered.18 Chinese women in a focus group study mentioned that they would guard HPV as a secret for fear of being labelled as ‘having been fooling around’.24 In the case when concealing the infection is successful, however, the felt stigma and the cost of concealment may adversely affect women’s physical and psychological well-being. Perceived stigma has been suggested to be a barrier to seeking sexual health care among young females as a consequence of anticipated social judgement from healthcare professionals.26 Also, fear of being stigmatized might deter women from taking preventive measures, such as HPV vaccination and HPV testing.12,19 Psychologically, the effort to conceal a stigma could backfire, leading to stigma-related thought intrusion and impaired social judgement and behaviour.27
Closely tied to stigma is shame, an intense emotion in consequence of a serious personal failure or moral transgression that has a devaluing effect on the core self.28 The moral stigma of having a sexually transmitted HPV infection elicited shame in women in hypothetical and real situations. A Web-based survey indicated that if found to be HPV-positive, women who knew that HPV was sexually transmitted expressed higher level of shame than those who did not know the transmission route.29 In-depth interviews with women demonstrated that the diagnosis of genital HPV or herpes led to radical damages to women’s sexual self.30 In another survey study, over 60% of the 489 HPV-positive respondents reported feelings of shame, decreased self-perceived sexual desirability and lessened sexual pleasure.31 Moreover, women’s use of debasing remarks, such as ‘dirty’ and ‘cheap’, to describe their feelings towards a positive HPV diagnosis also reflected a blemished self-image.9,22
It has been demonstrated that women who had tested positive for HPV had a significantly higher level of anxiety at the time of diagnosis.32–34 Anxiety related to an HPV diagnosis is multifaceted. There are certain clinical aspects of HPV that are particularly anxiety-provoking. hrHPV infection’s oncogenic potential elicits cancer-related worry. Among women with abnormal cytology results, those who tested positive for HPV had significantly higher perceived risk of developing cervical cancer than those who tested negative at diagnosis and at 6-month follow-up. High perceived risk of cancer was also found to independently predict anxiety in these HPV-positive women.33,35 When the link between HPV and cervical cancer was made explicit, the perceived severity of HPV infection increased, even for genital warts,19 and women tended to overestimate their risk for cancer if HPV infected.8 For sexually active individuals, the asymptomatic nature of some HPV infections, the lack of definitive preventive advice and lack of cure for existing infection raised distress and feelings of helplessness.19,36 Some women even questioned the point of informing them about HPV over which they have little personal control.23
Inadequate information coupled with misconceptions about HPV is another source of anxiety for women with or without HPV infection. HPV awareness studies consistently showed that in general, either HPV was unheard of or that knowledge about it was invariably poor.25,37–40 The little prior understanding led to typical responses of shock and fear when people were told about HPV and its link to various diseases.19,22,24
Among women who tested positive for HPV, those who did not understand its implication for their health demonstrated extremely high levels of anxiety.33
Furthermore, the clinical aspects of HPV are complex and difficult for the public to comprehend, making HPV education a challenging task. In a few studies, despite being given HPV information, participants still found the various issues about HPV confusing and overwhelming, which further aggravated their anxiety and negative emotions towards HPV infection.8,23 On the other hand, some women felt more reassured when clear and concise information about HPV was given.36
Another major concern following a positive HPV diagnosis is the issue of disclosure. To tell or not to tell, particularly a sexual partner, about one’s HPV infection is a difficult decision. Some women chose non-disclosure for reasons such as HPV had no apparent effect on men’s health, not knowing enough about HPV to inform others and to avoid being stigmatized.22 Embarrassment, anticipated negative responses from their partners and having a casual relationship were other reasons given for non-disclosure.41 Regardless of the reasons, the need to hide the infection puts the individual under constant fear of being discovered. A study on people with genital warts noticed a significantly higher level of anxiety among the ones who chose not to disclose their condition to their sexual partners than those who disclosed.41 Nevertheless, disclosure created no less anxiety for fear of its negative impact on current or future sexual relationships and subsequent social judgement,42 to the extent that some women believed that an HPV infection might end their intimate relationship.24,25
Blame and Guilt
A common finding amid qualitative studies on HPV was women’s prominent need to attribute responsibility, to find the originator of the infection, in the face of a real or hypothetical HPV infection.24,36 This need to find the culprit of the infection may serve to increase one’s sense of control over the threatening situation and to help formulate subsequent action to deal with the threat as well as to prevent its recurrence. Furthermore, following on our earlier discussion on stigma, it has been suggested that responsibility attribution influenced the affective responses of other people towards the bearer of the stigma.21
It may be postulated that in a presumably monogamous relationship, if a woman can attribute her HPV infection to her partner’s infidelity, she will likely receive sympathy and support from family and friends. On the contrary, if the infection is believed to be the result of one’s sexual impropriety, she will likely experience contempt from others.
Like shame, the feeling of guilt arises from personal failures but is more behaviour-focused, leading the individual to be preoccupied with the transgression with the motivation of undoing the harm or taking other reparative actions.28 Regardless of accountability, HPV-infected women reported experiences of guilt in relation to one’s past doing or non-doing, such as for having multiple partners or for not practicing safe sex.9,22,24 Guilt is also associated with non-disclosure, an issue discussed earlier. In stable intimate relationships, the involved parties are commonly expected to be true and to hide no personal fault from each other. Women who choose to conceal their positive HPV diagnosis may experience guilt for breaching this code. Some women eventually found this burden of guilt too much to bear and choose to disclose it to their significant other.30
Past studies showed that the psychological morbidity of HPV infection was associated with diminished health-related quality of life, had adverse influences on significant relationships and might deter women from seeking necessary health care.12,19,24,26,43,44
Professional intervention in terms of health education and individual counselling may help to alleviate some of the associated negative emotions. Recent literature on HPV unanimously pointed to the dire need for public education, as Garland and Quinn45 stated, ‘to destigmatize and demystify the whole [HPV] issue’.13,45,46
In general, the public were found to be most interested in learning about HPV’s transmission, prevention and detection, treatment and progression, and the associated risk of cervical cancer.13,47
Clear and consistent information, in particular on the high prevalence of HPV, the asymptomatic and transient nature of most HPV infections and the distinctive differences between hrHPVs and lrHPVs, was identified to be reassuring to women.29,36
These features may form the base on which educational initiatives are developed with the aim to reduce the negative connotations associated with HPV infection and its subsequent psychological impact on women (Table 1).
The challenge of HPV education lies in balancing professional accuracy with individual and public acceptability. To ensure accuracy, given the large amount of HPVrelated research still going on, it is important that healthcare providers are kept up-to-date with the latest advances in this constantly evolving field. Acceptability may be enhanced by taking into consideration the cultural and social background, personal beliefs and attitudes of the target audience to which HPV messages can be carefully tailored. On an individual level, understanding the client’s perceptions and concerns towards HPV infection is the first crucial step to effective intervention. This may be achieved through active listening with a non-judgemental attitude, followed by identification of information needs and intervention to meet these needs.
In conclusion, anogenital HPV infection is a prevalent sexually transmitted disease casting a heavy burden on society and on individuals. Generally speaking, common psychological responses to a positive HPV diagnosis include stigma, shame, anxiety, blame and guilt that are largely related to the sexually transmitted nature of the virus and its cancer-causing potential. The negative emotions may vary in nature and origin depending on the manifestations and outcomes of the HPV subtypes involved. Moreover, individual responses differ and are mediated by factors such as personal beliefs, social background and relationship status. In spite of the variations, the psychological distress associated with HPV may be alleviated by providing women with clear and consistent information aiming to normalize and destigmatize HPV.
About the Authors
Ms Kwan and Professor Ngan are both from the Division of Gynaecological Oncology, Department of Obstetrics and Gynaecology, The University of Hong Kong, Hong Kong SAR, China.
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A complete list of references can be obtained upon request to the editor.
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