People living with lifelong conditions (including HIV) have been affected by disruptions to their diagnosis, treatment and care during the COVID-19 pandemic. In the UK, face-to-face consultations have been adapted to take place over the phone and some people living with HIV mistakenly received government guidance advising them to shield at the start of lockdown.

We aim to explore COVID-19 experiences among people living with HIV as well as HIV clinical- and community-based workers and volunteers. This work will feed into a larger doctoral research project (using the 2017 Positive Voices survey data) looking to explore the impact of social determinants (e.g. housing, employment, income etc.) on the health and wellbeing of people living with HIV. This doctoral research project is in collaboration with colleagues based in the HIV Section at Public Health England.

Our project has involved three key stages:

(1) Initial community involvement, in collaboration with Positively UK1, where people living with, working in, or affected by HIV were invited to a video conference call (June 2020) to help shape the design and focus of a qualitative (interview-based) study. Details of this event can be found on our Community Involvement Insight Report page.

(2) Online, interview-based study with 14 people working in HIV services in England and Wales (community- and clinic-based) conducted October-December 2020.

(3) Online, interview-based peer research study with 19 people living with HIV sampled from the 2017 Positive Voices study conducted in June-August 2021. As part of this work, we recruited and trained two Peer Researchers and three Advisory Group members in core components of qualitative research including ethics, interviewing skills and analysis. Additional funding received from 2020 Societal Engagement Team Rapid Response Seed Fund.

Infographic on HIV CARE

 We are also now working closely with our co-researchers to plan the dissemination of our research findings and reflections of co-produced research. We have also developed a peer research training resource for researchers/PPIE practitioners interested in training members of the public in peer research (focussing on qualitative methods).

Subsequent work has included collaborations built with other researchers at Imperial College experienced in co-production. For instance, we organised and ran a reflective workshop (alongside co-researchers across three research projects) at the 2021 NCRM Research Methods eFestival on ‘Building and Sustaining Relationships in Participatory Action Research’.

[1] Positively UK are a peer-led organisation that offers a holistic approach and specialised services to improve the health and wellbeing of people living with HIV.

Full study title:

Experiences of COVID-19 Epidemic: a qualitative study of people living with, affected by, or working in HIV in the UK. 

Ethical approval:           
The study has gained Ethical approval from Dr Deborah Ashby, Head of Department, and the Research Governance and Integrity Team, Imperial College London. ICREC Reference: 20IC5893

Health/Social Care/Charity/Community Worker Participant Information Sheet:

Experiences of COVID-19 - Participant Information Sheet v1.4

People living with HIV  (Peer Interviews) Participant Information Sheet:

‌Experiences of COVID-19 - Participant Information Sheet v2.1

You may also wish to refer to our list of useful COVID-19 resources, advice and support for people living with HIV: Useful COVID-19 Resources for People Living with HIV

‌If you’re interested in finding out more about this work, please contact the study co-ordinator, Vas Papageorgiou (