Stigma surrounding genital herpes a major barrier to disclosure, UK study finds

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Most individuals with chronic genital herpes do not disclose their infection to their sexual partners before having sex with them for the first time, according to the results of a study from London’s Chelsea and Westminster Hospital published in the September 2007 issue of the International Journal of STD and AIDS. The investigators found that the stigma associated with herpes was a major barrier to disclosure.

Stigma, disclosure and herpes

The stigma associated with HIV has been well documented, and is covered in some detail in NAM’s booklet, HIV, stigma and you. However, HIV is but one of many sexually transmitted infections (STIs) that carry with it associations of moral degeneracy, undesirability and shame. Like HIV, genital herpes is also a stigmatised sexually transmitted viral infection that is treatable but incurable.

Until now, however, no studies in the United Kingdom had measured the impact of this stigma on disclosure to sexual partners. Consequently, investigators from London’s Chelsea and Westminster Hospital undertook a quantitative and qualitative study to discover the impact of the stigma of having chronic genital herpes on disclosure.

The study included a written questionnaire, which was distributed to patients with a diagnosis of genital herpes for at least year at the Chelsea and Westminster’s sexual health clinic (n=39), and also via a self-help advocacy group, the Herpes Viruses Association (n=31). There were no significant demographic differences between respondents from the two sources.

Glossary

disclosure

In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

anxiety

A feeling of unease, such as worry or fear, which can be mild or severe. Anxiety disorders are conditions in which anxiety dominates a person’s life or is experienced in particular situations.

qualitative

Qualitative research is used to explore and understand people’s beliefs, experiences, attitudes or behaviours. It asks questions about how and why. Qualitative research might ask questions about why people find it hard to use HIV prevention methods. It wouldn’t ask how many people use them or collect data in the form of numbers. Qualitative research methods include interviews, focus groups and participant observation.

quantitative

Quantitative research involves precise measurement and quantification of data, using methods like clinical trials, case-control studies, longitudinal cohorts, surveys and cost-effectiveness analyses.

Of the 70 respondents, 50 (72.5%) were women; the majority of respondents (91%) were of white ethnicity; and 98.5% of respondents were heterosexual. The median time since diagnosis was 78 months.

Disclosure

Not all respondents answered questions about their sexual partners and disclosure. Of the 68 who answered the question, 63 (93%) had had a sexual partner since their herpes diagnosis. Of those that had had sexual partners, 26 (38%) had had one or two; 17 (25%) had had between three and five; 10 (15%) had had between six and ten; and 10 (15%) had had more than ten.

Of the 63 respondents who answered questions about their sexual partners, 62 answered questions about disclosure. A total of 33 (54%) had disclosed their herpes infection to all of their sexual partners at some point. A further 23 (37%) had disclosed to some of their sexual partners; and six (9%) had not disclosed to any sexual partners.

Only 55 of the 56 individuals who said they had disclosed answered a further question about the timing of their disclosure. A total of 24 (44%) said they always disclosed before having sex with a new partner for the first time; 14 (25%) said they sometimes disclosed before having sex for the first time; and 17 (31%) said they always waited to disclose until after they had already had sex with a new partner.

Seven (10%) questionnaire respondents were randomly invited to participate in qualitative interviews: six individuals agreed, five of whom were from the clinic.

The investigators quote two participants who confirm the hypothesis that disclosure to valued sexual partners (i.e. those with whom a relationship is formed, or likely to form) is more likely to take place.

“It’s a real barometer for me of how much I want to be with that person... I’m only going to tell someone who’s already told me they love me. (Male, 34, diagnosed for 12 years)

“I told my ex-girlfriend who I was with for 18 months about the herpes but none of my one night stands as it would put them off sex with me." (Male, 39, diagnosed for five years)

The investigators note, “information control has been described as a defence against stigma and established relationships were seen as ‘safer’ places to disclose information regarding herpes... Problems described around disclosure in the interviews were broadly related to stigma, and non-disclosure can be seen as a defence against that stigma.”

Stigma

The investigators found that a number of issues emerged from the qualitative data but that there were two dominant recurring themes: stigma and concerns about disclosure.

They write, “the description of stigma as something experienced by an individual is clear in respondent’s fear of rejection, isolation and shame that runs through the interviews.”

The investigators note that the interviewees often described their infection with a sense of shame or in terms that parallel other stigmatising illnesses.

“I feel like a leper...Six years feel like a sentence.” (Male, 38, diagnosed for six years)

“I felt I was now tainted and wouldn’t be able to find anyone.” (Female, 33, diagnosed for four years)

Anxiety

The questionnaire also asked respondents about anxiety, based on the hospital anxiety and depression scale (HADS). A total of 69 completed the HADS correctly.

The mean score for anxiety was 7.9, and the median was 8. Scores between 8 and 10 are considered mild cases of anxiety, and scores of 11-21 are considered moderate-to-severe cases of anxiety. Although 19% of respondents scored between 8 and 10 this was similar to the expected prevalence in the general population.

However, 22 (32%) of respondents scored eleven or above, which is more than twice as many as would be expected in the general population (12.6%). The investigators suggest, “genital herpes infection [may be] a vehicle for other concerns that results in increased anxiety...[but nevertheless this has] implications for both the planning and implementation of services for those with genital herpes infection.”

Conclusion and comment

The investigators believe that disclosure of herpes infection to sexual partners “can allow for consideration of methods aimed at reducing chances of [herpes] transmission" and go on to suggest that “stigma, by promoting non-disclosure, can be seen as encouraging transmission.”

They conclude by saying, "reducing stigma could increase disclosure, and therefore, reduce the transmission of [herpes] to sexual partners by enabling greater risk-reduction behaviour."

The researchers, however, did not ask the respondents about the real or perceived risks they were taking in terms of herpes transmission during sex, the kind of sex they practiced, or whether they practiced safer sex. A recent studyfound that the male latex condom protects both genders from herpes transmission.

They also do not mention that in England and Wales sexual herpes transmission in the absence of disclosure has potentially been criminalised, alongside HIV and other STIs, following the publication of The Crown Prosecution Service’s draft policy for prosecuting cases involving sexual transmission of infections which cause grievous bodily harm. This may have affected the respondents' willingness to answer certain questions regarding sexual behaviour.

In addition, there is currently a great deal of debate amongst HIV prevention experts about the effectiveness of relying on disclosure as a prevention tool. A recent article examining the impact of the criminal law approach to persuade HIV-positive people to disclose their HIV status to their sexual partners, concludes, “there are many flaws inherent in using disclosure as a prevention strategy."

Nevertheless, the qualitative and quantitative data provided by this study strongly suggest that continued stigma around all STIs – in this case, herpes – contributes to the myriad difficulties around disclosure and adds to the body of evidence suggesting that the criminal law and public health messages are out of step in this regard.

References

Bickford J et al. Chronic genital herpes and disclosure... The influence of stigma. International Journal of STD & AIDS 18: 589-592, 2007.