Determinants of self-reported health and well-being outcomes among people living with HIV in the UK: a mixed-methods exploration of the impact of stru

Lead Research Organisation: Imperial College London
Department Name: School of Public Health


The treatment and care of people living with Human
Immunodeficiency Virus (HIV) has significantly improved in
the past two decades across the United Kingdom (UK).
These advancements now mean that people can live with HIV
for much of their life, with few complications; it is a "chronic"
(or lifelong) condition and is considered 'beyond
undetectable'. Yet, differences in clinical stage at diagnosis
and how people manage their other health conditions (comorbidities) alongside HIV still exist. People living with HIV
have also described an unmet need in social and welfare
services being provided, which includes services such as
immigration or employment support, and whose funding has
been affected by recent changes in government policies.
This project looks to investigate why differences exist for the
health and wellbeing of people living with HIV, and how much
this can be explained by peoples' economic and social
circumstances (their social determinants). We will also
explore whether recent changes in public policies, including
those related to the reported "hostile environment" for
immigration, have also affected the experiences faced by
people living with HIV when accessing social and welfare
services in the UK.
We will use two main methods to explore these differences;
firstly, analysing data from a survey conducted in 2017 by
Public Health England (PHE) of over 4,000 adults living with
HIV in the UK, the Positive Voices study. Secondly, we will
conduct in-depth interviews with people living with HIV as well
as other key stakeholders including community
organisations, service providers and policy makers. We will
work closely with an advisory group of people living with HIV
to help guide our research as it develops, and who will be
involved in each step of the study - designing our approach,
guiding analysis and interpretation, and disseminating
The findings will be shared with our collaborators at PHE to
provide evidence for future policy and to inform clinical care
in order to improve the experience of people living with HIV
accessing health and social care services as well as end-user
organisations that support people living with HIV.

Studentship Projects

Project Reference Relationship Related To Start End Student Name
ES/P000703/1 30/09/2017 29/09/2027
2322253 Studentship ES/P000703/1 30/09/2019 31/12/2022 Vasiliki Papageorgiou
Description Peer Research Training Resource
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Description 2020 Rapid Response Seed Fund
Amount £2,885 (GBP)
Organisation Imperial College London 
Sector Academic/University
Country United Kingdom
Start 12/2020 
End 07/2021
Description Collaboration with Positively UK 
Organisation Positively UK
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Firstly, we conducted a community involvement event together in 2020 (listed as a specific activity) and following on from this we recruited and trained four co-researchers on qualitative research methods (specifically a peer research approach - again, listed as a specific activity). The research team and I designed all training sessions which we have since deposited into a repository and shared with researchers/public involvement practitioners further afield.
Collaborator Contribution We advertised for the opportunity to be involved as a co-researcher through Positively UK channels (newsletter, website, social media). Positively UK also arranged for DBS checks to be conducted for two peer researchers who interviewed research participants. Finally, the CEO of Positively UK was involved in the recruitment panel and attended all training sessions and research team meetings.
Impact doi: 10.25561/93710 doi: 10.25561/94819
Start Year 2020
Description COVID-19 Community Involvement: Let's Talk About... HIV Care 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact 25 people living with HIV or working in HIV services from across the UK joined an online Zoom session co-delivered with Positively UK (a peer-led HIV support charity) on Tuesday 23 June 2020. We aimed to use the session for attendees to share their experience, views, questions, and concerns on accessing HIV care during COVID-19. The session included breakout room discussions which were facilitated by one member of Positively UK and co-facilitated by a staff member from the Patient Experience Research Centre (PERC) based at Imperial College London.

The session helped shape the design and focus of a subsequent qualitative (interview-based) study and identified potential future research participants who agreed to be recontacted.
Year(s) Of Engagement Activity 2020
Description Leading conference workshop on relationship building in participatory action research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact We ran a reflective workshop at the NCRM Research Methods eFestival (Thurs 28 Oct 2021) on 'Building and Sustaining Relationships in Participatory Action Research'. The workshop was co-designed, co-delivered by co-researchers with lived experiences of different health conditions who had been involved with various research projects. 48 people attended (24 active participants - completed a poll during the call) which sparked discussions on various topics including the ethics approval process of PAR in academia and payment/recognition of co-researchers. We have since planned for all co-researchers (across different research projects) to write a reflective article on working together and their shared experiences.
Year(s) Of Engagement Activity 2021
Description Participatory Research Advisory Group & Peer Researchers 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact The aim of this project was to build collaborations with community members that enable our research to explore how COVID-19 may have impacted the experiences of people living with HIV. We established a research team of academics and people living with HIV to inform and advise on a participatory research project which received additional funding (£2885) through the Imperial College London Societal Engagement 2020 Rapid Response Seed Fund ( This included the training and support of two Advisory Group members and two Peer Researchers; the latter conducted qualitative interviews with people living with HIV. We have since shared our approach at the NCRM eFestival and are looking at collaborating with wider groups based at Imperial College who have also conducted co-produced research.
Year(s) Of Engagement Activity 2021