Dagmar BrunowAnna-Mia Ekström
Clinical professor in infectious disease epidemiology focusing on HIV, senior infectious disease physician and leader for the research group Global and Sexual Health (GloSH) at the Department of Public Health Sciences, Karolinska Institutet
Foto: Martin Stenmark

Living with HIV in Sweden is the first extensive study in Sweden where quality of life has been studied among people living with HIV. In total, 1096 individuals responded to an anonymous survey that included different aspects of self-rated quality of life. The survey was available in 10 different languages. The study was performed at 15 healthcare units for infectious diseases in Sweden – that account for 75% of the HIV care in the country – and at two needle and syringe exchange clinics in Stockholm.

People living with HIV in Sweden report high quality of life but dissatisfaction with sex life

The participants reported high quality of life in general and most participants were satisfied with their physical health and their emotional wellbeing as well as with their relationship to friends, partners, and families. However, they were less satisfied with their economic situation, and the great majority was dissatisfied with their sex life. Two aspects of HIV stigma correlated with lower quality of life – concerns of what others might think of their HIV infection (concerns over public attitudes to people living with HIV) and self-stigma (negative self-image because of the HIV infection). Fear of stigmatization because of HIV can lead to people hiding their HIV status from other people. The majority of the participants had told at least one person close to them about their HIV status, but almost one in five had not told anyone. Just a few of the participants were completely open with their HIV status. Most of the participants who had told at least one person close to them about their HIV status felt that they received the support they needed. The study showed no correlation between quality of life and gender, age, country of birth, or city of residence. However, the results showed that psychological symptoms, psychiatric side effects from HIV medication, substance abuse, and a higher consumption of alcohol than desired correlated with lower quality of life. Other factors associated with lower quality of life were homelessness and low income. The results also showed that a negative impact on the sex life after being diagnosed with HIV, was correlated with a lower quality of life. Twenty-five per cent had stopped having sex with others after being diagnosed, and another 25% of the respondents reported that HIV had had a negative impact on their ability to experience pleasure in relation to intercourse. Most respondents also experienced difficulties in engaging in sexual relationships due to the legal requirement of informing a sex partner of their HIV-positive status.

Need for updated knowledge about HIV and HIV treatment

The results show that people living with HIV still are negatively affected by the low level of HIV knowledge in society. It is important to spread updated and evidence-based knowledge about HIV and the effects of the current treatment in order to reduce stigma and discrimination.

Excerpts from the documentary “The Longest Journey is the Journey Within” (2015) by Staffan Hildebrand

View the entire film, The Longest Journey is the Journey Within 2015 »

Anna Mia Ekström and Steve Sjöquist, Stockholm 2015

Simon Blom and Steve Sjöquist, Stockholm 2015