If people living with HIV take their medicine, they do not transmit HIV, but they often face both stigma and mental health problems. A study in Denmark has revealed that women living with HIV have more recurrent loneliness and lack of sexual desire and fewer children and close friends than women without HIV. The results emphasise the importance of healthcare professionals paying attention to these aspects for women living with HIV, and further research is needed to understand the reasons for differences and to develop targeted interventions.
People living with HIV do not transmit HIV if they receive the right treatment. Nevertheless, they often experience both stigma and physical and mental problems. Their sexual health is also affected, and many have less sexual activity and more sexual problems. However, research on the sexual health of women living with HIV has so far primarily focused on reducing the risk of transmitting HIV. A new study examined the women’s quality of life and health problems.
“Previous research on the sexual health of women living with HIV has primarily been carried out in countries and settings with different social conditions from those in high-income countries. We therefore chose to investigate whether psychosocial, sexual and reproductive health problems were equally pronounced among the 1,600 women living with HIV in Denmark. The conclusion was quite clear. These women have fewer children and close friends and more often report recurrent loneliness, lack of sexual desire and sexual dysfunction than women without HIV,” explains first author Ditte Scofield, PhD student, Department of Infectious Diseases, Amager and Hvidovre Hospital, Copenhagen, Denmark.
Menopause and HIV
The study was carried out using data collected in the nationwide SHARE study, which aimed to investigate the psychosocial, sexual and reproductive health of adults living with HIV in Denmark. A total of 1,000 people living with HIV consented to participate via the university hospital clinics in Copenhagen, Aalborg, Aarhus and Odense.
The 150 women living with HIV were asked to fill in a questionnaire about their psychosocial health, such as anxiety, loneliness, number of close friends and their sexual health, including desire, sexual problems and quality of life. Their responses were then compared with those from women without HIV in Denmark who had previously participated in the population-based survey Project SEXUS – a major research project on sexuality by Statens Serum Institut and Aalborg University.
In addition, various factors related to menopause were included, since there have been concerns that menopause may occur earlier and be more problematic among women living with HIV than among women without HIV.
“However, women living with HIV did not differ from those without HIV regarding menopause or the symptoms that accompany it. The frequency of symptoms of anxiety and depression was also similar in both groups,” says Ditte Scofield.
Mental health aspects continue to be important
These were the only similarities. Women living with HIV experienced recurrent loneliness twice as often as women without HIV. In addition, they had significantly fewer children and close friends.
“Given the considerable loneliness, the fact that these women have fewer close friends is perhaps not so surprising, but the number being half as big is really important, especially because people living with HIV today should be able to live a life like everyone else. When you receive HIV treatment, as virtually everyone living with HIV in Denmark does, you cannot transmit HIV to other people – not to friends, partners nor their relatives or, if you become pregnant, to your children. However, the women in this situation may not quite dare to believe this knowledge, or their social network may not know this,” explains Ditte Scofield.
The researchers say that a lack of desire to confide in other people about HIV may explain the greater loneliness and fewer close friendships. Overall, much evidence indicates that the mental aspects of HIV are much more important than the physical ones. Another explanation could be that many women living with HIV in Denmark were born in other countries. This may mean that they have a smaller social network, but people originating from societies in which living with HIV is strongly stigmatised may be even more careful not to share anything about their illness with other people and thus form less close friendships.
“More women living with HIV reported a lack of sexual desire, which is in accordance with other studies. Women living with HIV had decreased overall sexual function and increased prevalence of problems such as dryness and pain during intercourse. These dysfunctions may be associated with the lower sexual desire,” says Ditte Scofield.
Don’t – wait – what now?
The study does not suggest that the lack of desire results from previous sexual abuse or poor physical or mental health, which are usually strongly associated with sexual problems. Instead, the sexual problems can probably be attributed to the fact that HIV is primarily transmitted through sexual contact.
Other studies have shown that women who have acquired HIV through sex have less desire for sex in general. These women often associate sex with being shameful. They feel guilty and feel stigmatised because of their illness.
An important finding was that women living with HIV had fewer children. Since most of these women have been living with HIV for many years, this difference likely reflects the time when mother-to-child HIV transmission was a major concern in relation to having children.
“In the 1980s, people living with HIV were told that they should completely stop trying to have children. In the 1990s, they were told to wait until treatment improved. Only since 2000 have they been told that it is safe, so it is not really surprising that these women have had many fewer children,” explains Ditte Scofield.
Live just as long
According to Ditte Scofield, the study shows that the time has now really come to do away with stigma and create better knowledge about HIV – both at the societal level and in relation to the individual.
“Healthcare professionals should regularly have conversations about such topics as loneliness and sexual health as part of their routine conversations with women living with HIV,” says Ditte Scofield.
However, at the societal level, living with HIV also requires special attention, since HIV stigma most likely still plays a role in reinforcing inequality in sexual and psychosocial health.
“We are conducting a similar study of older people living with HIV and men living with HIV, and although HIV affects their quality of life very differently , the clear similarities indicate that living with HIV in a society in which many people still believe that HIV is a contagious and fatal disease is problematic, since people who are being treated do not transmit HIV and live as long as everyone else,” concludes Ditte Scofield.