Response and sample characteristics
Overall, we received 1929 questionnaires, including 1113 booklets and 816 online responses. Of these, 152 responses (8.6% of all) were excluded from further analysis because they did not live within the UK (n=33), and/or did not confirm they had diagnosed HIV (n=103) and / or had previously taken part in the study (n=36). This left a final sample of 1777 unique individuals with diagnosed HIV resident in the UK. This paper reports responses from the 1217 male respondents who identified as gay or bisexual, or who specified a term for their sexuality that implied same-sex behavior.
As a group, men who completed the booklet version of the survey had been diagnosed with HIV for longer compared to men who completed the online version (F=93.1, df =1, p<0.001). Those who completed the booklet version were significantly more likely to be on HIV anti-retroviral therapy than those who completed the survey online (83.9% versus 62.1%; χ2 = 72.7, df = 1, p<0.01). Men who had completed the survey online were as a group significantly younger than men who completed the booked version (F=126.94, df = 1 , p<0.001) There were no significant differences between booklet and online recruited men according to ethnicity, level of educational attainment, region of residence or sexual identity.
The difference between our sample and all men living in the UK with diagnosed homosexually acquired HIV was estimated by comparing sample demographics with the National Survey of Prevalent HIV Infections Diagnosed (SOPHID), conducted annually by the Health Protection Agency’s Centre for Infections and Health Protection Scotland.
] SOPHID 2007 data was used. Our sample over-represents men in Wales and Northern Ireland and under-represents men in Scotland. Across England, our sample over-represents men in the North West and West Midlands regions and under-represents those in East of England and East Midlands. The sample also over-represents men of white British ethnicity and under-represents men from all minority ethnic groups (Table
Demographic profile of gay and bisexual men in the sample (N=1217)
Prevalence of problems with sex
Overall, 70.5% (N=1199, missing 18) of the MSM with diagnosed HIV reported one or more problems with sex within the previous 12 months. There was no significant difference in whether or not a problem was reported by age, time since diagnosis with HIV, or area of residence, although specific problems did show difference (see below). The problems experienced are shown in Table
Percentage of respondents reporting each of ten specified problems with sex
Among Other problems, respondents most commonly described sexual pleasure being undermined by illness, pain and/or treatment side-effects. Fatigue, problems with bowel or prostate, and skin disorders were also mentioned.
The problems experienced varied by age but not all in the same direction. Men who had a problem with disclosing their HIV status to sexual partners were as a group significantly younger than men who did not have this problem (F=17.6, df = 1,874, p<0.001). This was also true in relation to worries about passing HIV to a sexual partner (F=24.12, df = 1,874, p<0.001) and worries about prosecution if HIV is transmitted (F=9.96, df = 1,874, p<0.01). Men who had a problem with poor self image or low self-confidence were, on the other hand, older (F=18.63, df = 1,874, p<0.001).
Several problems were more common among men not currently on anti-retroviral therapy. Compared to men on therapy, those not on therapy were more likely to have been worried about disclosing their HIV status to a sexual partner (54.7% versus 42.2%; χ2 = 10.12, df = 1, p<0.01), to fear rejection from a sexual partner (57.5% versus 46.6%; χ2 = 7.59, p<0.05) and to worry about transmitting HIV to a sexual partner (66.4% versus 48.8%; χ2 = 19.99, df = 1, p<0.001).
Men diagnosed within the preceding 5 years were more likely to be worried about disclosing their HIV status (55.0% versus 39.0%; χ2 = 21.216, df = 1, p<0.001) and about transmitting HIV to a sexual partner (64.6% versus 45.9%; χ2 = 28.75, df = 1, p<0.001) than men who had been diagnosed for over 5 years.
Groupings of problems with sex
In factor analysis, the first four components extracted accounted for 62.6% of the variance in the matrix, and were interpretable. Their loadings for the ten items are shown in Table
. No other factor had a loading of 0.7 or above on any of the ten items.
Factor loadings for the first 4 principal components
The first factor (accounting for 27.1% of the variance) loaded at almost 0.7 and above on three items related to managing disclosure to sexual partners: worries about sexual rejection, worries about disclosure and worries about being prosecuted for passing on HIV following non-disclosure. Worries about passing on HIV also loaded heavily on this factor. The following three factors each loaded at 0.7 or over on one item only – loss of libido, too little or no sex, and too much sex.
Potential for resolution of sexual problems
Men who had experienced a problem in relation to sex in the last year were asked whether their problems had been solved or gone away, gotten better, gotten worse or stayed the same. Only 1.2% (n=10) felt that the problem had been solved or gone away, 14.1% (n=118) said things had gotten better and for 34.4% (n=289) things had gotten worse. 50.3% (n=422) reported no change. Of those who indicated their problems had gotten better, worse or had not changed, 35.7% (n=287) felt that further help or support could help them to reduce or overcome these problems, and a further 40.1% (n=322) were unsure whether it could.
Suggestions for support
Four key themes emerged from the suggestions men made for what this support might realistically look like (n=393). These were: therapeutic support to increase self-esteem and confidence; tackling HIV-related stigma; clarity on criminalisation of HIV transmission; and help to achieve better quality of sexual life. Short descriptions of themes with indicative quotes from respondents now follow.
Therapeutic support to increase self-esteem and confidence
Over a third of responses related to a desire for therapeutic support, either group-based or one-to-one, to help address issues of low self-esteem or low self-confidence, which were having a negative impact on their ability to have sex they are happy with. Typical responses were “Feeling better about myself and not seeing myself as a dirty, infected bastard would help things” and “Continued counselling support to build confidence.”
Tackling HIV related stigma
Around a quarter of respondents said that tackling HIV-related stigma, or broadly educating other gay men and the general public about HIV (including how it is transmitted and what the prognosis now is) would help to improve their sexual interactions and reduce the likelihood of rejection following disclosure. A typical response was “Finding that the level of public understanding was sufficiently improved that I felt more confident about disclosure to prospective partners without risking ostracisation or public humiliation.”
Clarity on criminalisation of HIV transmission
Around a sixth of responses directly related to concerns about the criminalisation of HIV transmission and a desire for clearer guidance for men, their sexual partners, and health professionals about how and why such prosecutions operate. Most were critical of the use of the criminal law and the consequences for risk negotiation. A typical response was “Concern about transmission and criminalisation makes me anxious and depressed…a more reasoned discussion about criminalisation would help. Currently, all the pressure and responsibility is on ME…what happened to each person is responsible for their own sexual health?”
Help to achieve higher quality of sexual life
Around a quarter of respondents expressed a need for help achieving good quality sex, rather than simply a high frequency of sexual contact. They also wanted help to overcome issues with erectile dysfunction as well as a loss of libido, which were having a detrimental impact on their sex lives. Typical responses were “I want more than just sex that is easy to get but these days I want sex WITHIN a relationship not recreational sex” and “Safe treatment for erectile problems.”