Changing and unfinished narratives of the mental health impact of HIV in the UK

Abstract

The mental health impacts of HIV have evolved significantly over the last four decades, in parallel with changes in the virus's overall health consequences. This study charts transformation in narratives about mental health problems associated with HIV over the course of the epidemic, as outlined by people with HIV (40%), professional carers (45%) and activists (25%) in the UK. In particular, our study examines evolving mental health impacts and changing service provision during three key periods: The early days of the epidemic; after the introduction of effective antiretroviral therapy (ART) in 1996; and in more recent times as HIV came to be regarded as a chronic manageable condition. Fifty-three participants were recruited: Male (68%), female (32%), White (90%), African/Afro Caribbean (6%) and South Asian (4%). Results indicate that despite important changes in the severity and nature of the mental health impacts of HIV, there were persistent challenges, related to the long-term mental health consequences of HIV among earlier generations of people with HIV. There were additional challenges associated with: ageing with HIV; the development of sexual dysfunction; and the possibility of neurocognitive impairment. The organization of mental health care for people with HIV moved from specialist teams to general practice, presenting challenges of mainstreaming care. The commissioning and delivery of mental health services need to be sensitive to the ever-changing social contexts and the potential for ‘left behind’ people living with HIV, despite the overall ‘naturalisation’ of HIV.