“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

“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

Sexual and Reproductive Health Matters, September 2023

37671828

Faustine Kyungu Nkulu-Kalengayi, Anna-Karin Hurtig, Ida Linander

Around 40% of people living with human immunodeficiency virus (HIV) in Sweden are women. However, little is known about their experiences, particularly those related to sexual and reproductive health and rights (SRHR). This study aims to explore perceptions and experiences of SRHR among women living with HIV (LWH). Twelve interviews were conducted with women LWH from September to October 2019 and analysed using thematic analysis. The central theme describing participants' experiences of social relationships, intimate encounters and reproductive life, "Discrimination is harder to live with than the disease itself", is based on three themes that contain subthemes. Theme 1 describes how participants reconsider and reorient their sexual and reproductive life after diagnosis. Theme 2 highlights how (mis)perceptions of HIV affect sexual and reproductive life and lead to abusive treatment and internalisation. Theme 3 describes a paradoxical shift of responsibilities where participants experience being compelled to take greater responsibility in some situations and stripped of the right to decide in others. This study suggests that despite notable progress in HIV treatment, stigma and discrimination stemming from outdated beliefs and (mis)conceptions, ambiguous policies and guidelines, and unequal access to information affect SRHR experiences of women LWH more than the virus itself. The results emphasise the need to: update knowledge within healthcare settings and among the public; clarify ambiguous legislations and guidelines; ensure equal access to information to enable all women LWH to take informed decisions, make fully informed choices and realise their SRHR; and consider the diversity of women LWH and enable shared decision-making.