An (un)restricted living: a qualitative exploration of the mental health and well-being of people living with HIV in England

Abstract

People living with HIV, who have access to treatment, now have normal life expectancy. However, stigma and discrimination continue to affect health and well-being. We conducted focus groups with people living with HIV (n = 37), and key informant interviews (n = 20) with clinical and non-clinical workers who support people with HIV between May and November 2023. We aimed to explore the ongoing challenges and concerns faced by people living with HIV in England to inform a new model of person-centred HIV care. Participants discussed living well in relation to: 1) an unrestricted living; 2) emotional sexual health and intimacy well-being; and 3) autonomy of health and healthcare. Aspirations for an unrestricted living revolved around experiencing life in the same way as others, rather than having to compromise a sense of self or negotiate experiences differently due to their HIV status. Participants also shared a desire to live fulfilled sex lives without fear of being stigmatised due to living with HIV, and of feeling deserving of a satisfying sex life and sexual intimacy. There was also a particular anxiety about sharing an HIV status with new sexual partners. Conversations around sex and intimacy needed to be opened up to cover topics including pleasure and sexual wellness. A compromised autonomy of health referred to physical health; for example, the need for daily medication. Autonomy of healthcare referred to the challenges of negotiating an often fragmented and fractured healthcare service. Some shared experiences of discrimination by non-HIV healthcare workers and a requirement to advocate for their needs which is a specific challenge for marginalised groups. Person-centred care, which uses an intersectional approach to delivering HIV care, would respond to the needs and aspirations of people with HIV and their whole self. This offers the potential to address HIV-related stigma which continues to hinder progress.