23 June 2020
Zoom call with people living with, working in, or affected by HIV: intro slides, snap polls & breakout room discussions.
Vas Papageorgiou (PhD student, PERC), Silvia Petretti (CEO, Positively UK)
Breakout room hosts / facilitators:
Jane Bruton and Vas Papageorgiou (PERC) / Joyce (Positively UK); Philippa Pristerà (PERC) / Mina (Positively UK); Emily Cooper (PERC) / Helen (Positively UK); Meerat Kaur (PERC) / Silvia Petretti and Julie (Positively UK); Will Viney (PERC) / Mel (Positively UK)
Insight report authors:
Vas Papageorgiou, Emily Cooper, Jane Bruton, Silvia Petretti, Philippa Pristerà, Helen Ward
As part of her PhD research, Vas Papageorgiou is looking to understand how COVID-19 is influencing the health and wellbeing of adults living with HIV in the UK, from the perspective of individuals, carers, healthcare workers and other sources of support. Further details of the research project being developed can be found on our COVID-19 Research page.
Working collaboratively with Positively UK and PERC staff, she invited people living with, affected by, or working in HIV to help shape the design and focus of her qualitative (interview-based) study via PERC’s new online model of community involvement (‘COVID-19 Community Involvement: Let’s Talk About... HIV Care’). An approach that also aims to inspire new ways to rapidly engage and involve communities remotely during a public health emergency, through strengthening partnerships with existing groups (in this case, Positively UK).
The online session was co-delivered by Vas and Positively UK on Tuesday 23 June 2020 via Zoom. It ran from 5–6.30pm and was attended by 25 people living with, affected by, or working in HIV from across the UK.
The agenda for the call included:
- An introduction to PERC and Positively UK
- Background to the project
- Our plans for research
- Q&A (although no questions were asked during the session)
- Pre-discussion anonymous polls
- Breakout room discussions (5 rooms; 6-8 people per room) facilitated by one member of Positively UK and co-facilitated by a PERC staff
- Next steps
This page summarises the conversations captured on the day.
 Defined by the NIHR as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”: https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/ [Accessed 13 July 2020]
Overall, we identified eight key themes with summarised comments from the breakout room discussions provided below.
Please note: the following insights came from an involvement exercise and should not be interpreted as research results. In other words, the insights reported below will be used to help refine our research question and to influence the design and delivery of a future research study (including the interview topic guide).
1. Misinformation, conflicting/delayed messaging and shielding advice
➢ This primarily focussed around conflicting government advice regarding people living with HIV being sent text messages and receiving letters informing them that they need to shield.
➢ However, there were also some discussions around conspiracy theories, the UK government response and rumours within the HIV community.
2. Avoiding, delaying or being prevented access to healthcare (including GP, hospital appointments, sexual health/HIV services)
➢ This was predominantly centred around a fear of acquiring COVID-19.
➢ Some health professionals also described how many people living with HIV assumed services were not open during COVID-19, when they in fact were.
3. Maintaining an adequate supply of medication, managing regimens and adhering to therapy were conflicted by in issues around privacy and confidentiality
➢ People described some challenges around maintaining adequate supplies of medication, being unable to adapt their regimen, and continuing adherence to antiretroviral therapy during lockdown.
➢ Lockdown has resulted in a re-emergence of concerns regarding privacy and confidentiality, particularly among people living with HIV who have not shared their HIV status with members of their household.
➢ There were some concerns that people may have to share their HIV status in situations that made them feel uncomfortable; for instance, when ensuring an adequate supply of medications.
4. Adapting HIV services to a new model of self-care and digital exclusion
➢ Despite a shift towards virtual support groups and telemedicine which functioned for some people, digital exclusion was considered to be a real barrier for those who do not have easy access to the internet, phone or computer.
5. Re-deployment of HIV staff during COVID-19
➢ Some health professionals who had joined the call reflected on their personal experiences, and that of colleagues, who had been re-deployed to intensive care units during COVID-19.
6. Impact on self and feelings of isolation when shielding/during lockdown
➢ Lockdown resulted in people being isolated from their usual support systems which will have negative consequences to mental health.
7. Wider negative impact on finances, food security and housing and the disproportionate impact on the most vulnerable and marginalised groups living with HIV
➢ This was a widely discussed concern across the breakout rooms and was often linked to conversations around the most vulnerable and marginalised people living with HIV and equally, difficulties for people accessing services.
➢ Breakout rooms discussed concerns for the most vulnerable (e.g. homeless, newly diagnosed, experiencing domestic violence, migrants, BAME, people living below the poverty line etc.).
8. Longer-term health and economic consequences of COVID-19
➢ This was discussed in relation to those having had COVID-19 (e.g. long-term side effects) but also in relation to the provision of care and services by charities and other methods of support.
The insights from this activity will be used to help focus the design of the study, particularly the interview topic guide. Feedback received from the call is also useful for planning how and where to recruit participants and will be used to inform the ethics application we are currently preparing for submission.
We will continue to work with Positively UK during the next planning stage (and eventual undertaking) of this study to ensure our work remains meaningful and relevant to people living with HIV.