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Brighton & Sussex Medical School

The uplift study

The UPLIFT Study

The UPLIFT Study (Understanding Priorities for improving quality of LIfe in people with HIV and cognitive impairmenT) aims to understand the research priorities for improving quality of life in people living with HIV who have a cognitive impairment.

This project is funded by The University of Sussex Healthy Ageing Participatory Research Fund and represents a collaboration between researchers from The Centre for Dementia Studies, the Department of Global Health and Infection and the Brighton and Hove LGBTQ+ Switchboard.

Project overview

Medical treatment has transformed HIV to a manageable, chronic condition. The UK is now home to a growing, ageing population of people living with HIV (PLWH). However, cognitive impairment in people living with HIV is an increasingly important health concern, with incidence of cognitive impairment expected to rise as the HIV population continues to age. It is estimated that mild to moderate cognitive impairment is currently seen in 14-28% of PLWH. 

To date, research has primarily focused on the causes of cognitive impairment, improving screening techniques for cognitive impairment, and clarifying the clinical relevance of the different diagnostic criteria used. More recently, the advent of specialist HIV memory clinics in key centres around the UK, such as the Orange Clinic in Brighton has improved helpseeking for cognitive impairment and the clinical management of cognitive difficulties. Crucially, however, research and interventions aimed at assisting people living with HIV to live well with cognitive impairment do not currently exist and represent an important un-met need in this population.

Recent research by the research team has detailed the poor quality of life described by PLWH with cognitive impairment. The UPLIFT Study was designed to begin to examine some of the needs of this group and understand in what areas we can think about producing interventions which might help improve and maintain quality of life.

Project aims

The aim of this project is to build on our prior work and work with PLWH and cognitive impairment to:

  • Establish the first UK lived experienced research advisory group for people living with HIV and cognitive impairment
  • Co-produce research priorities for improving QoL in PLWH with cognitive impairment

The research team along the HIV advocacy group members will advertise the project across local and national networks to identify and recruit founding members of a lived experience research advisory group for PLWH with cognitive impairment. In addition, we will deliver a series of focus groups with PLWH with cognitive impairment and with relevant health and voluntary sector staff working with them. Participants in the focus groups will presented with the prior findings for the PhD work and asked to identify and agree upon a number of research priorities for improving QoL in this group. The findings from this study will be used in the preparation of a larger grant proposal to trial interventions which improve QoL in PLWH in cognitive impairment in HIV clinics across the UK.

Get involved

If you are interested in taking part in a focus group or in becoming a member of the Lived Experience Advisory Group please get in touch with Kate Alford (K.Alford3@bsms.ac.uk) or John Hammond (John.Hammond@switchboard.org.uk).

If you would like more information, please take a look at:

·       Our leaflet for those interested in getting involved in the Lived Experience Advisory Group

Click here to download the leaflet >