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 has been in collaboration with Positively UK[1]
Our project has involved a number of stages and has generated several outputs:
[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.
Why Co-Production? Reflections from our study
A film by Imperial College London in collaboration with Positively UK, about participatory approaches in HIV research. Film-maker: Ed Rolfe.
Project Outputs
Project outputs
- Publications, reports and peer research training resource
- Presentations, workshops, podcasts and events
- Peer Research Training Resource (2022) - Developed from the series of online training sessions used to induct and train peer researchers for this study. The resource is free to access and use.
- Poster at AIDS2022, Experiences of the COVID-19 epidemic: a participatory qualitative study with people living and/or working with HIV in the UK (available to view online here)
- Co-designed and delivered reflective workshop on ‘Building and Sustaining Relationships in Participatory Action Research’ at the 2021 NCRM Research Methods conference in collaboration with other researchers experienced in co-production based at Imperial College London
- Co-delivered a workshop at Imperial College London’s Engagement Day 2022 titled ‘Exploring the depths of peer research: building relationships, challenging power dynamics and the role of effective training’
- Co-designed and delivered a HIV Co-Production Showcase on our research findings to key stakeholders including interviewees in July 2022 which included a participatory activity to prioritise research findings
- Shared reflections of our experiences working together as academic researchers and peer researchers in Positive Effect’s podcast (‘Pozcast’)
Project information
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 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
Funding acknowledgements:
- Imperial College London Societal Engagement team – 2020 Rapid Response Seed Fund & Participatory Research Seed Fund
- NIHR Imperial Biomedical Research Centre
- ESRC London Interdisciplinary Social Science Doctoral Training Partnership
If you’re interested in finding out more about this work, please contact the study co-ordinator, Vas Papageorgiou (vasiliki.papageorgiou17@imperial.ac.uk)
Please note - this work feeds 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 the UK Health Security Agency (previously Public Health England).
Contact us
PERC Director and Co-Founder
Prof. Helen Ward
h.ward@imperial.ac.uk
For enquiries about PERC's research activity, please email:
patientexperience@imperial.ac.uk
For enquiries about public involvement in research, please email:
publicinvolvement@imperial.ac.uk
Read our blog
All posts- Why did nobody ask us?! Reflections and findings from co-produced research into children’s vaccine uptake.
- Three key takeaways from our participation in the Research Engagement Network (REN) community roadshows
- You and Your Health Data: Results of our Great Exhibition Road Festival activity
- “I sound like Darth Vader and I cough up fur balls” How people living with Airway Stenosis have informed my research career so far.
- How public involvement changed our research question exploring experiences of people with Long Covid
- Celebrating public involvement in NIHR Imperial BRC supported research
