Mental health and stigma still disproportionately affecting young adults, survey finds

Chiva’s CEO, Amanda Ely, reflects on the results of the Positive Voices survey which were published on 12 January 2024.

The Positive Voices survey is important as it captures a wide range of experiences of people living with HIV in the UK. It’s excellent to see that over 4,500 people living with HIV took part in the survey. It provides us in-depth insights into quality of life, health and wellbeing issues and experiences of clinical care.

Whilst it’s a shame that the survey does not include young people under the age of 18, there are some stark findings in the young adult age group (18 – 34 year olds).  In particular we can see that mental health and the impact of stigma are disproportionately affecting young adults. The report finds:

  • There has been lack of progress in reducing the high prevalence of mental health conditions, particularly anxiety and depression, which has remained unchanged since 2017. Mental health conditions are disproportionality affecting younger people (44.4%).
  • Stigma remains prominent in the lives of many people living with HIV. 1 in 25 people reported having been verbally harassed because of their HIV status and a similar proportion felt that family members had made discriminatory remarks. Higher levels of stigma were reported among younger people, women and people who identified as trans, non-binary or in another way.
  • Almost half of people (45.1%) felt ashamed of their HIV status. Self-stigma was more common in younger people (54.4%).
  • Whilst there has been a reduction of stigma in healthcare services, there is still much more to be done to combat it. Fear of attending healthcare services in the last year due to concern that someone may learn their HIV status was most frequently reported among younger people (18.4%).
  • Younger people had a greater need for help with loneliness and isolation.

This survey highlights that high levels of unmet need remain. It also highlights that we cannot generalise the impact of HIV across different groups of people. We need to recognise that, for example, HIV related stigma and mental health intersect with other inequities such as racism.

The survey helps to focus our attention on the holistic needs of people living with HIV. We should be moving much more quickly to the routine use of Patient-Reported Outcome Measures (PROMs) in clinics. PROMs are tools that ensure patients are able to report broadly on their experiences of HIV services and wider health and wellbeing needs which may not be taken into account in current clinical models of care. Enabling us to ensure services are led by the views and priorities of the people using them will lead us to develop effective holistic models of care.