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COVID-19 and digital inequalities

The COVID-19 pandemic has both brought pre-existing health and social inequalities within UK society into sharper focus and created deeper divides. Poorer people are disproportionately affected by exposure to the virus and the consequences of infection. Further, the obligatory shift to virtual spaces has created concerns that those with no or limited access to digital resources may become increasingly excluded from health and social landscapes.

Digital inequalities, while previously perhaps less evident than health and social inequalities, are becoming an increasingly visible and significant part of the fabric of deprivation. In a pandemic, with social distancing guidance and periodic lockdowns, such inequalities constrain access to the essential facets of human life: social contact, health services, education, welfare benefit applications, work and information. The full extent of the consequences of exclusion from these critical areas of life is yet to unfold.

Though a less everyday experience, another aspect of life that is affected by digital inequalities is participation in social research. As Nind et al. (2021) pointed out in their recent rapid review, researchers across the globe have had to adapt their recruitment and data collection methods to adhere to stay-at-home and social distancing imperatives, largely transitioning from face-to-face research encounters to remote methods such as telephone calls or videoconferencing. For participants with ready access to digital resources, with an email address, laptops, wifi or mobile phones, this could present some challenge but be relatively unproblematic. Yet those with limited or no access to digital resources, digital exclusion from research – the lack of capability to contribute their experiences to the development and dissemination of knowledge - represents another form of marginalisation.

People who’ve lived in prison and the ‘Qual-P’ project

Qual-P is a study of the quality of prison healthcare led by the University of Leeds. As part of this research we interviewed prison healthcare staff and people who’ve lived in prison about their experiences of the delivery or receipt of healthcare in the prison setting. The project was originally conceived in 2017, and our recruitment strategy planned well before the onset of the pandemic. Mindful of the multiple and compounding disadvantage experienced by many people who’ve lived in prison, including digital inequalities, we had planned to recruit and interview people about their prison healthcare experiences face-to-face. This approach relied upon relational groundwork, that is, spending time at various community-based services that people who’ve been in prison might use such as approved premises, substance use recovery houses and charitable support services. Becoming familiar faces at these services, we hoped, would serve the dual purpose of facilitating the development of rapport with participants prior to the interview taking place, and minimising recruitment burden for busy service staff. Additionally, we could ensure that participants received project documentation, and that we could arrange for interviews to be undertaken in a private room.

Impact of COVID-19 on Qual-P

Recruitment for the study began at the end of 2019, and our planned strategy was successfully implemented in the early stages. However, the onset of the COVID-19 pandemic meant that from March 2020, face-to-face recruitment and data collection was no longer possible. Further, Her Majesty’s Prison and Probation Service suspended ethical approval for all studies for four months in 2020.

When we were able to recommence, we were obliged to employ remote methods. The fact that we were simultaneously engaging healthcare staff for the study threw into sharp relief the issue of digital inequalities; although staff were facing additional pressures from providing healthcare in a pandemic, emailing project information and arranging telephone or video interviews was relatively straightforward. In contrast, engaging people who’d been in prison, some of whom had no email to send documents to, or no access to a mobile phone, required a greater reliance on service staff than we had originally intended. Naturally we were concerned that our sample would become skewed in favour of those with access to digital resources, and endeavoured to counter this by working with agencies to negotiate access to agency landlines for those without phones. In addition, we worked with a Patient and Public Involvement representative with a wide network of local contacts. Although he was willing to loan an iPad to participants for a video interview, the risk of viral transmission precluded that option.

Engaging agencies to assist with recruitment was in itself challenging due to the unprecedented pressures on service delivery they were facing. Assistance from project team members was crucial in making connections to enable us to continue data collection, and we are grateful to all those who supported us. However, there are issues with reliance on others for recruitment. Firstly, there is little or no control over who is approached for the study. Secondly, although all of the participants had been verbally informed about the study in advance of the interview, few had been passed the project documentation that had been emailed to the agency. Reviewing the project information sheet, consent form and privacy information during the call was time-consuming and potentially fatiguing for the participant. Thirdly, where individuals were using a landline in the agency, privacy could not be assumed, and needed to be negotiated in advance. Interestingly, privacy seemed much more of a concern to the researchers than some of the participants, perhaps so accustomed to having privacy invaded that it was deemed less important. 

Although it may not have been their preference pre-pandemic, many researchers have found the switch to remote recruitment and data collection methods to be a convenient, efficient and cost-effective alternative to face-to-face research. With ongoing uncertainty about the levels and nature of face-to-face contact permissible, and government guidance inconstant, much research now in the planning stages is likely to embrace remote methods as the primary, if not sole, means of recruitment and data collection. However, we need to consider the potential impact of digital inequalities when developing strategies and ensure that we do not exclude people without access to digital resources.

Acknowledgement: We would like to thank all the participants who gave their time to be interviewed for Qual-P, and all the project team members for their support.

Biography: Sue, Krysia and Laura are researchers working on Qual-P, a project exploring the quality of prison healthcare through interviews with people who’ve been in prison and prison healthcare staff and analysis of patient healthcare records. For more information, contact s.bellass@leeds.ac.uk, visit our website https://qual-p.org or follow us on Twitter @Qual_P.

Disclaimer: This study is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Programme (reference number: HS&DR 17/05/26). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

At the time of the COVID-19 outbreak in March 2020 in the UK, we were in the field, collecting Financial Diaries data from financially vulnerable individuals. We knew back then that the impact of the pandemic would not be felt equally, and that our research participants were likely to be amongst those hit hardest by COVID-19 and the associated social and economic crisis. Three national UK lockdown’s later and we are in the field again with a similar study, conducting a one-year project funded by the ESRC, as part of UK Research & Innovation’s (UKRI) rapid response to COVID-19.

Our FinWell-COVID study seeks to better understand changes in people’s financial lives, health and wellbeing induced by COVID-19 itself as well as its associated interventions (e.g. social distancing and isolating) in vulnerable members of society.

The Dilemma

FinWell-COVID is the third project in a programme of work aimed at better understanding the link between finances and health and wellbeing, including the ways that might facilitate this relationship. The project aims to: (1) better understand how vulnerable individuals manage their finances during the COVID-19 pandemic; (2) assess the specific financial issues that they encounter due to COVID-19 and its associated interventions, the strategies they use to improve their situation and how these strategies link to their health; and (3) explore subjective views of community participants and stakeholders on COVID-19 and associated interventions.

All FinWell projects take a mixed-method approach using Financial Diaries and Q methodology. In previous projects, FinWell-Glasgow (2014-2017) and FinWell-London (2019-2020), using Financial Diaries, we found that individuals living on low to moderate incomes have extremely complex and sophisticated financial lives.

Financial Diaries are used to gain an in-depth insight, over time, of the daily financial management strategies of the financially vulnerable. Financial Diaries can capture information on the type of events that may affect individual finances, the coping mechanisms used, and how financial management connects to other aspects of participants’ lives such as their health and wellbeing.

This time, the realities of the COVID-19 pandemic and associated interventions (such as lockdown, physical and social isolation) meant the remote collection of Financial Diaries. Financial Diaries are intensive and need repeated interactions with participants for baseline surveys, weekly diary collection, monthly interviews (typically for 6 to 7 months) and incentive payments. For such challenging research, building rapport between researchers and participants is crucial.

The dilemma was: How can we engage participants and collect in-depth data on individual’s financial lives during a global pandemic?

The planning

For participants’ recruitment, we reached out to 66 participants who had previously been part of our FinWell Glasgow and London projects and who had given permission to be recontacted. Our pool of participants possessed diverse socio-economic characteristics in relation to age, gender, ethnicity, immigration status, health conditions and employment status- but one specific characteristic is persistent across all participants: they are all living on low-to-moderate income.

We put a lot of thought and consideration into planning and designing the research project. Particularly, researching, examining, investigating Data Protection issues, and piloting several tools that could facilitate remote data collection and communication; such as online ethnography platforms, online survey tools and remote communication tools. A key concern was the issue of inclusion and whether the tools we tested would be accessible to participants. Aiming for ‘digital inclusion’, we created what we call a ‘preference form’ for the participants' enrolment stage (conducted via phone calls/emails), where we ask potential participants for their communication and participation preferences from a list of options.

For each stage of the research, there were different options available. For example, phone calls, texts, paper and electronic (excel) diaries, post, messaging and calling apps (WhatsApp), and online collaboration tools (MS Teams). Other questions related to the availability and accessibility of smartphones, tablets, computers and internet connection. These questions enabled us to customize the mode of participation according to each participant's preferences.

What worked and what did not work?

The impact of the pandemic on our previous participants was evidenced at the recruitment stage. A number of them declined the invitation to take part in the research due to the negative impact of the pandemic. Reasons included: workload -especially for key workers-, increasing care responsibilities, stress due to job hunting (lost jobs during the pandemic), struggling with the consequences of domestic violence that occurred during the pandemic and others who reported changes in their circumstances such as moving out of the city.

For diaries completion, the majority of the participants chose to complete a handwritten weekly diary using a Financial Diaries booklet which was designed, printed and sent to them by post for self-completion. The booklet is organised into weekly diaries, and each weekly diary includes sections to capture data on income, expenditures, savings, gifts and health-related and financial-related events. Upon completion of the weekly diary, participants are asked to send a picture of their anonymised diaries via WhatsApp or by email. Upon completing a full month’s diary, we conduct a monthly interview via phone/video calls to discuss diaries. However, others were unable to use any of these options. This was due to health conditions that make it difficult for them to use such tools or self-complete weekly diaries (such as Dyslexia or sight problems), lack of financial literacy skills or lack of digital literacy skills despite having access to smartphones, laptops and the internet. Instead, for these participants arrangements were made to accommodate their needs and collect their diaries in a way that is most suitable for them. For example, by making weekly phone calls to collect diaries, or agreeing to collect monthly diaries in person, meeting them in a public place and at a safe distance.

What is next?

Research on poverty to understand how individuals are affected by the COVID-19 pandemic has increased over the past year. However, methodological challenges that may occur while conducting research amidst a global pandemic are still unfolding. Our experience in FinWell-COVID so far indicates that in order to reach the most seldom heard individuals, a flexible, multi optional approach that addresses digital exclusion challenges, beyond the availability of digital tools, such as smartphones, computers and internet connection, is required.

Bios

Fatma Ibrahim, PhD researcher at the Yunus Centre for Social Business and Health, Glasgow Caledonian University. She is an Associate Fellow in HEA and a researcher in Finwell Glasgow and FinWell COVID research projects.

Dr Linda Fenocchi is a health economist and researcher at the Yunus Centre for Social Business and Health, Glasgow Caledonian University. She is a former UK civil servant, currently working on FinWell COVID study.

Dr Jack Stout Rendall is a researcher at the Yunus Centre for Social Business and Health, Glasgow Caledonian University. He is currently working on the Q Methodology study within FinWell COVID, alongside other research including a social procurement project and a study on mutual aid.

Dr Neil McHugh is a Reader at the Yunus Centre for Social Business and Health, Glasgow Caledonian University. His research lies at the intersection between ways to improve societal health and wellbeing and distributive justice.

Dr Olga Biosca, Reader at the Yunus Centre for Social Business and Health, Glasgow Caledonian University, is the Principal Investigator of the FinWell research programme which explores the connection between financial management and health and wellbeing.

More information

FinWell COVID is a one-year research project funded by ESRC (grant number ES/V01532X/1). The principal investigator is Dr Olga Biosca, Yunus Centre for Social Business and Health in Glasgow Caledonian University (GCU). Other members in the research team, also from GCU unless otherwise specified, are Professor Rachel Baker, Dr Enrico Bellazzecca, Professor Cam Donaldson, Professor Jonathan Morduch (NYU) and Professor Antony Morgan.

This is a second part of our blogpost in which we’re reflecting on how during the pandemic we had to rethink our work focusing on building a movement centered on lived experience activism to end poverty. We’ve had to think about how to create digital, creative and caring spaces for engagement, a community that would make a difference. Here we’d like to reflect on some lessons we’ve learnt, with the help of four of many collaborators we have chatted to as part of writing this blog. This included Matt Sowerby, then Poet in Digital Residence at CAP, Ellis Howard, actor, writer and activist, Jayne Gosnall involved in setting up self-reliant groups, and Tia Clarke, Children’s Right2Food Ambassador. The first part has focused on digital and creative engagement, and the second one is about care and practical lessons learnt. 

As our blogpost developed, with thanks to the Covid realities team we have decided to split it in two parts - the first one looking at digital and creative engagement, the second one on care and practical lessons learnt.

Engaging with care

People aren't always touched by the lecture, or the grand speech. They're sick of being talked down to from platforms [...] but I think people respond to creative things, and they get messages and they feel messages. It's incredibly powerful. Jayne

Creating an inclusive & safe space, with little formality was key to allowing people to be themselves, the odd dog, cat or child appearing, swearing, delivery men knocking, nipping for a brew or smoke. This wasn’t about creating a ‘professional’ environment, but a caring & natural one where gentle, skilful facilitation was a key. Before Covid we might have met in Wetherspoons or a local youth centre, we wanted to create that same feeling of comfort, with the balance of power spread equally across both facilitators & participants.

It was important to balance personal experiences with those of the wider community, building trust over a period of time so people didn’t feel under pressure to open up if they didn’t want to do so. Building trust takes time, but even an individual creative workshop, like a collage session, can sparkle ideas and make people feel good.

Something that was evident was everybody's vulnerability throughout, less or more so at times. With people feeling equal it meant those who might previously have been seen as the ‘professionals’’ also opened up more & with that shared vulnerability became increased confidence & openness. People spoke of personal experiences they hadn’t opened up about before, shed a tear, spoke more openly about their views with less judgement. In practical terms though it was important to make people aware that the discussion would be open, and that if they felt uncomfortable at anytime they could turn cameras off, mute themselves, dip out or leave.

Conclusion

‘In terms of digitally... I found it actually much easier than I ever have in my life, to build some sorts of community. And the community that I did build was so much further reaching, because we hit like a point in history where every person is energized.’ Ellis

Overall, energizing people digitally is not at all a straightforward process. It provides many opportunities for building a community of care, as well as quite a few challenges - lest the fact that if we believe people with lived experience should be at the centre of the movement to fight poverty, these are the same people that are often at the heart of the crisis themselves. That poses important questions about how and when should people engage, especially as we’d like more people to join the movement. Time and again we reflected on the size of our community as it is simply easier to build the required trust and relationships in a small group. Are we too ‘exclusive’- how easy is it for new people to come in? But we believe that we also learnt from each other and our caring practices ‘spilled over’ to other workshops and digital (and real life) engagements, beyond our small community.

What can we take forward in a post pandemic environment? Apart from the lessons learnt below, we believe that creativity seized the day during the pandemic and proved to be a form of engagement that energizes people not interested in politics. Digital participation has fostered new relationships and we’d like to see a mix of face-to-face and digital engagement (when people have the resource) in future. At the same time, we need to be aware of barriers existing for people to engage digitally - how can we make sure people are able to engage ‘on their own terms’?

Zoom (after?) Covid: 4 lessons learnt from activists and allies

• Jayne advises to create time for a chat at the beginning (for example, joining 15 min earlier), especially if a new person is coming, and to support them with any technological needs. We (Barbora and Ben) used this in our Food Vulnerability Covid-19 project and it works well - people join earlier and enjoy having a chat, connecting with like-minded people.
• Ellis reminded us to have a vision for every meeting. What do we want to see at the end of this? It can be ‘just’ about creating a supportive space for people to chat, but it’s always useful to let people know your intentions. There’s a balance between not foregrounding outputs and being transparent with people - perhaps you have a question you want to explore?
• Tia’s top tip is to have icebreakers, and also to use breakout groups with skilled facilitators so there’s less awkwardness. If you are bringing together people from different walks of life, introductions that do not start with jobs work best - for example, what’s people’s favourite food? What’s the weather like where they are? How would their pet or a best friend describe them?
• Matt, who facilitates creative writing workshops, mentioned people expecting his space to be like a ‘classroom’ which may stifle creativity. We wrote above that spatial hierarchies seem to disappear online, but before any meeting think if there are any power hierarchies you need to work with/disrupt - is there a divide between people asking questions/listening in and people who answer those questions, or does everyone share equally? Who decides what’s going to be talked about? How do you want people to feel in that space?

Bios

Barbora Adlerova @BAdlerova
Barbora is a PhD student at Cardiff University, exploring the role of lived experience of food insecurity in food governance and wondering how we can create more sustainable and just food systems through radical participation.

Ben Pearson @benpearson1987
Ben works for Church Action on Poverty on the Food Power programme in partnership with Sustain, supporting alliances to involve those with grassroots lived experience, activists & allies across the UK, and overseeing the peer mentor programme. He’s a member of the Global Solidarity Alliance for Food, Health & Social Justice, and is also responsible for coordinating a programme of creative activity at Church Action on Poverty. Previous to his current role he’s worked in the arts, advocacy, health & social care and mental health. He’s an associate of the Centre for Children & Young People’s Participation at UCLAN and a passionate activist & campaign.