Women living with HIV reported their experiences living with the disease, highlighting discrimination in their social lives.
Reported discrimination in the social lives of women living with HIV (LWH) in Sweden emphasizes the need for updated knowledge and clarified guidelines for HIV in the country, according to a survey study published in Sexual and Reproductive Health Matters.
There are 8289 people in Sweden who are LWH, according to the study, with women representing approximately 40% of all cases. National response to HIV has changed over time, with guidelines being altered in Sweden to only notifying partners based on treatment status. Guidelines for women LWH who breastfeed and are looking to reproduce have also changed. This study aimed to gain insight into the perceptions and experiences of sexual and reproductive health and rights (SRHR) by surveying women LWH in Sweden.
The researchers defined SRHR as being a “state of physical, emotional, mental, and social well-being in relation to all aspects of sexuality and reproduction, not merely the absence of disease, dysfunction, or infirmity.” Qualitative interviews with women LWH in Sweden were done for this study, and all women were recruited through organizations that support people who LWH, including association groups run by peers. All women were recruited from September to October of 2019 and were included if they were women LWH, were aged 25 years and older, and lived in Sweden.
Twelve women were interviewed for this study, with ages ranging from 25 to 61 years. The women were from 6 different countries and lived in 6 different regions of Sweden. All interviews were individual and based on open-ended questions. All but 1 interview was held on the telephone. All interviews lasted from 30 to 65 minutes, and all transcripts of the interviews were analyzed using thematic analysis.
There was 1 main theme, 3 themes, and 7 subthemes identified in the interviews. The main theme was that encounters with other people were the main limitation of LWH and not the virus itself. These include stereotypes, misconceptions, and prejudice about the disease. Some women saw sexual and reproductive limitations due to internalization of the stigma and the expectation of prejudice.
The main theme could be broken up into 3 themes, including reconsidering sexual and reproductive life after the diagnosis of HIV, perceptions of HIV affecting sexual and reproductive life that include abusive treatment and internalization, and a paradoxical shift in responsibilities.
Although many women said that it’s possible to live a normal life with HIV, some women lived without sex because of the diagnosis. This included fear of spreading the virus through faulty birth control. Women also internalized stigma, believing that no one would want to be with someone with HIV. Women also became more worried about childbearing, fearing the effect of anti-retroviral therapy (ART) on the unborn child.
The women also emphasized the misperceptions about HIV that they have encountered in others, including belief that people LWH were exclusively drug users or sex workers. Misperceptions regarding the contagiousness and deadliness of HIV in general were also noted, and these reportedly limited the women’s sexual and reproductive life. This included some health care workers advising women LWH against becoming mothers, according to respondents. Women also found that they had to weigh the pros and cons of telling their close friends and family about their diagnosis.
Lastly, older women felt that they were restricted in their sexual life by their legal obligation to share HIV status, and some described feeling as if they were criminals. Although the obligation was lifted, and some women saw it as a relief, there were others who had not had their obligation lifted and that the matter had never been raised by their health care provider. Participants noted that having the obligation lifted was therefore dependent on relationship status, as well as the good will of their doctor.
There were some limitations to this study. Although the women included in this study were from different regions and were sociodemographic backgrounds, these experiences may not represent all women LWH. Non-verbal communication and body language could not be read through telephone interviews, and incorrect translation or loss of information in interviews conducted in both Swedish and English could be a barrier to accuracy in interviews. Consent due to different languages also had the possibility of being misunderstood.
The researchers concluded that stigma and discrimination in women LWH was still prevalent in Sweden due to outdated beliefs, misconceptions about the disease itself, ambiguous policies and guidelines, and unequal access to information. The study highlighted that improvement in these areas is necessary for better quality of life in women LWH.
Nkulu-Kalengayi FK, Hurtig AK, Linander I. “Discrimination is harder to live with than the disease”: an interview study of the perceptions and experiences of sexual and reproductive health and rights among women living with HIV in Sweden. Sex Reprod Health Matters. Published online September 6, 2023. doi:10.1080/26410397.2023.2245197