By Karen Gray, with Ellie O’Keeffe and Pascale Aebischer
Please click here to access this guest blog post on WonkHE about the value of Arts and Humanities in times of crisis, and what we’ve learned from our survey of 106 researchers from 50+ teams in the Pandemic and Beyond cohort, about the unique pressures they faced and how they adapted their research methods, approach to partnerships, types of output and patterns of dissemination.
Charlotte King and Fransiska Louwagie discuss the research collaborations that have informed a new education programme to help secondary students to make sense of their pandemic experiences through political cartooning. Blog written in collaboration with Sarah Weidman, Lucie Spicer and the broader Covid in Cartoons team and partners.
The Covid in Cartoons team have worked with partners ShoutOutUK and Cartooning for Peace to develop a dynamic and engaging minicourse for secondary schools, using the medium of political cartoons to focus on youth experiences during the COVID-19 pandemic.
The course includes participatory learning with professional cartoonists that helps young people make meaning from their pandemic experience, and better understand the wider contexts in which that situates. In doing so, it aims to build their criticality, sense of agency and belonging, and supports resilience pathways. These foci are of particular significance as the pandemic poses specific challenges for young people – particularly those in seldom-heard and/or under-represented groups – who may feel especially disempowered.
The project allows the research team to uncover and examine individual and collective narratives of the COVID-19 pandemic to elucidate how young people make meaning of their situation. It investigates how the pandemic has affected both their sense of identity and their outlook on the future. As political cartoons provide students with tools that encourage self-reflection and freedom of expression, they were chosen as a tool and medium to engage young people in building a critical narrative of the crisis and its impact. Throughout the project, students develop tools to decipher and articulate the implications of political environments and the differential impact it has on varied demographics.
Closely aligned to the UK-focused AHRC-project was an GCRF (Research England)-funded short-term project on Political Cartooning and Peace-Building in Conflict and Post-Conflict Contexts, that has seen political cartooning workshops happening with young people in Côte d’Ivoire, South Africa, and Kenya . This short-term project amplified the aims of the AHRC-project by centralising seldom-heard voices from across the globe. An initial LIAS Working Paper captured some of the findings and discussion from this initiative.
To showcase the outcomes of these projects to the public, support was obtained from the University of Leicester’s ESRC IAA funds (Pi Dr Fransiska Louwagie; Co-Is Kara Blackmore and Sarah Weidman, research associates on the Covid in Cartoons project) to organise an arts-based and youth-led event at the Forum for Global Challenges at the ICC in Birmingham from 3 to 5 May. The Forum for Global Challenges was an international meeting taking place in conjunction with the Birmingham 2022 Commonwealth Games. It aimed to “generate solutions to some of the most pressing challenges faced by our planet and its people, from climate change and destruction of the natural world, to rising inequality, especially exacerbated by climate change and the global pandemic”. With further support from the School of Arts and the Leicester Institute for Advanced Studies at the University of Leicester, as well as from the University of Birmingham as organiser of the Forum, we were able to put on a unique set of events, involving the participation of young people, artists, media specialists from Shout Out UK and international cartoonists from Cartooning for Peace.
As part of the Forum strand on Education and Employability (led by Prof. Peter Kraftl from the University of Birmingham), the Covid in Cartoons team held a roundtable with young people from Sirius Academy Hull, with an interactive discussion led by Lucie Spicer from Shout Out UK, and cartoonist Tayo. Cartoons created by young people as part of the project were utilised to galvanise discussion surrounding the theme of global challenges and creative solutions. Other project partners, including from a GCRF-funded project on political cartooning with the University of Nairobi, offered responses throughout the hybrid session to ensure a transnational perspective. The roundtable event provided a poignant platform whereby young people developed ownership over their perspectives, and confidence in the summation of the analytical skills acquired over the past year. This experience illuminated the importance of empowering young people to consider future possibilities otherwise repudiated.
Cartoonist Tayo, who has lived both in the UK and Nigeria, congratulated the young people present on their drawings during a cartooning tutorial, reminding them of the famous statement by Nelson Mandela that “Education is the most powerful weapon you can use to change the world”. As young people discussed how they had felt overwhelmed by online information and teaching during lockdowns, and how the COVD-19 pandemic has put their lives and development on hold for a significant amount of time, this was a powerful encouragement.
Discussions during the roundtable were captured via live-drawing by cartoonist Piet, also from the Cartooning for Peace network, who used humour and metaphors to express the challenges of the COVID-19 era for young people.
Alongside the roundtable, the Covid in Cartoons team exhibited a project-based art installation over the 3 days of the event. In partnership with Vehicle Arts, an organisation that promotes emerging artists, mixed-media artist Rebecca Harvey-Hobbs developed an installation dedicated to both the AHRC- and GCRF-funded projects.
As the basis for the display, the artist visually transformed outputs from the project participants in an installation comprised of 3D interactive elements. These were displayed alongside a digital showreel of participant drawings, to give visitors a range of insights into young people’s perspectives.
Alongside access to young people’s (anonoymised) cartoons created throughout the course, visitors were encouraged to engage in activities, such as a social media campaign with visual depictions of individual experiences of the pandemic represented on masks and feedback cards indicating the level of insight gained. Indeed, artist Rebecca Harvey-Hobbs emphasises the importance of public engagement as “varying methods of communication leads to greater depth of understanding [and] inspires new interest”. Across the 3 days, the installation attracted a diverse audience of visitors and policy makers from areas including; public health, puppeteering, engineering, political science, pedagogy, media literacy, sexual health, and representatives from AHRC and UKRDC. Additionally, visitors felt inspired to talk openly about their experiences of the pandemic, and the ways in which it affected their lives.
The visitor responses gathered via the feedback postcards showed a shared appreciation for the inclusion of the international workshops based in South Africa, Kenya and Côte d’Ivoire. 93% (N=15) of people who completed this question felt the installation helped to gain new insights into young people’s perspectives of the pandemic ‘a great deal’ or ‘quite a bit’. The open feedback sections on the postcards demonstrated that visitors appreciated the creative and interdisciplinary aspect of the project. One read; “… a great example of collaborative work between partners in a novel medium that frees expression through creativity and mindfulness”.Additionally, a main take-away surrounded the need to include young people’s perspectives. One stated “Listen to young people! We always forget about their voices”. A shared observation across the forum feedback was the need to discuss future implications of the pandemic – an outcome which spoke to the aims of the exhibition as well as justifying the trajectory of the research.
Following the forum, the art installation has been presented at the Pint of Science festival in Leicester, by PI Fransiska Louwagie and artist Rebecca Harvey-Hobbs. It will also be showcased at a policy event at the Cartoon Museum in London on 21 June. These events also an avant-première of the Covid in Cartoons end-of-project film, produced by Shout Out UK. This amazing short film, produced by Shout Out UK, is now available for viewing here.
Thanks and Acknowledgements. The Covid in Cartoons research team comprises Dr Fransiska Louwagie (PI), Dr Diane Levine (Co-I), Dr Kara Blackmore and Dr Sarah Weidman (Research Associates). We gratefully acknowledge funding for these projects from the Arts and Humanities Research Council, the Global Challenges Research Fund (Research England) and the University of Leicester’s ESRC IAA Fund.
Blakeney Clark is a final year English Literature undergraduate at Exeter University. She has been working as a student intern on the Pandemic & Beyond project media team, specialising in social media engagement. In this blog, she offers her perspective on the future of arts and humanities research as one of the ‘next generation’ emerging from degrees undertaken during the pandemic and shares what she has learned about research impactfrom her experience on Pandemic & Beyond.
You never truly appreciate what you have until its gone. It’s a cliché that has surfaced again and again over the course of the pandemic as the jobs, industries, and services it was previously all too easy to take for granted disappeared amongst a haze of social-distancing rules. Theatres closed, libraries barred their doors, and in the meantime, more cuts and curriculum changes meant that the arts and humanities receded too from the field of education, even as teaching moved online. Wolverhampton, Goldsmiths, and Roehampton universities are the latest to face hundreds of redundancies as the government focuses on “developing programmes with practical skills and industry/employer engagements”. Therefore, as we come out of the worst phases of the pandemic and the threats to the arts and humanities become less visible, we must ask ourselves how we learn from the last few years of collective losses to ‘build back better’ and adapt our attribution of value in a post-pandemic world.
This issue is particularly prominent to me as a third year humanities undergraduate, heading into an unknown wilderness, otherwise known as the world of work. I guess I am part of the ‘next generation’ (often referred to with the cheery adjunct ‘ill-fated’ in the news) having undertaken my degree during the pandemic and also in the context of huge disruption and fraught politics within arts and humanities courses. With each year, the future of the path I have taken feels all the more uncertain as the cultural and creative sectors seems to be increasingly side-lined and devalued, their vulnerability highlighted by the hit that these sectors took during the pandemic. Don’t get it twisted. I’ve loved every minute of my degree and I don’t regret taking the course I did. But it is frustrating and demoralising to hear endless jokes about the lack of ‘real world value’ of my degree; comments that can only really be responded to with a self-depreciating joke through gritted teeth about the self-indulgence of my life choices and future of unpaid student debts. Furthermore, this depreciation is supported and perpetuated by policies and funding cuts like those affecting Wolverhampton and Goldsmiths. Crazy as it seems, working with the Pandemic and Beyond team this year, I have come to recognise that the creative and cultural industries are not only being undervalued but are actively being threatened with collapse.
Yet this is completely incongruous with everything that the Pandemic and Beyond project has demonstrated about the power of the arts and humanities during the global health crisis. For context, this project brings together humanities research on the impact of the Covid and its associated lockdown measures in different areas of life across the UK. The research covers a huge breadth of inquiry and encompasses groups often overlooked by policy makers such as children, people in care homes, migrant communities in London, actors, dancers, and people with learning disabilities. Many of the projects involved providing schemes and resources to immediately benefit their target groups. By collating the research together, the project ensures that resources and knowledge can be shared, thematic links can be identified, and that findings can be better communicated to the public. The work has so many implications for routes of change and recovery post-pandemic and the research continually demonstrated that this starts with the arts which supported and sustained people during the pandemic.
As part of the project’s media campaign, I was helping to break down the projects’ research outputs to translate them to a larger audience via social media. This involved interviewing some of the academics leading the projects to create short ‘clickable’ video content, as well as creating bite-sized podcast snippets to contribute to an ongoing effort of humanities researchers to get their voices heard and shift the valuation of their research. Through examining the projects and getting to talk to the people carrying them out, I was able to get a sense of the vast range of experiences of the pandemic, many of which I was totally unaware of before. Furthermore, the research highlighted the integral importance of cultural services and arts organisations within communities. It was these groups, places, facilities, and workshops which scraped people’s hopes together throughout the pandemic and helped them feel less alone. I spoke to Professor Heddon whose project Walking Publics, Walking Arts highlighted the loss and rediscovery of walking during the pandemic, helping people cope with lockdown measures in urban spaces. I spoke to Professor Reid who talked about the immense value of public libraries, which his research showed were essential to the people who relied upon them. I spoke to Dr Edelman about the ways that religious ritual had changed in digital spaces and about the communities from diverse faith backgrounds who were brought together through this creative adaptation. Each of the Pandemic and Beyond projects brought to light the power of the arts and humanities within communities to adapt and overcome the challenges of the pandemic. When these cultural services were lacking or shut down, these losses were losses felt keenly by all.
Yet, it was striking to me while conducting the interviews that the very process of these projects’ investigation attested their own value. Cheesy as it may be, as a humanities student myself, it was truly empowering to hear from the researchers about the impact that their research was having; to witness their ability to step outside of their previous research areas (which may have looked theoretical before) and apply their knowledge in direct and effectual ways. The array of research outcomes in the Pandemic and Beyond portfolio are a testimony to the inter and cross-disciplinary potential of their work and the unique insights that humanities can bring to understanding and overcoming problems posed by the pandemic in a way that felt uniquely ‘human centred’.
Hearing from these academics about their research on the ground level left me with a real sense of responsibility to see these voices listened to – even if I was just running the Twitter feed. I want to graduate into a world which takes account of the unmeasurable human benefits brought by the arts that humanities research has highlighted, even if their economic benefits are not easily quantifiable. Of the people Professor Reid observed crowding outside the doors of public libraries to access the free Wi-Fi when the libraries shut down; of the children who were given a voice through political cartooning workshops carried out by Professor Louwagie; of the many hundreds of online arts festivals, performances, and arts projects which brightened millions of households during the waves of debilitating lockdowns. This research isn’t just observational. The projects in the Pandemic and Beyond portfolio demonstrate a shift towards more action-oriented outputs and interventions, such as policy briefs and webinars, which show the ability of this research to translate what they have observed during the Pandemic into actionable solutions. The breadth of the project outcomes, as well as the flexibility of their methods, gives me real hope for the future of the arts and of the arts research to endure and gain the recognition that it needs. What needs to change now is the public and political valuation of this sector – and just maybe our collective experiences of the arts during the pandemic will give us the hindsight to do so.
As we emerge from the devastating impact of Covid-19, we must decide what kind of world we want to live in in its aftermath. The value of arts interventions over the lockdowns has been observed, investigated and empirically proven. Policy implications and recommendations have emerged which have the potential to benefit the wellbeing of society and to make the post-pandemic world a more fair and creative one. It is truly amazing what collective wisdom the Pandemic and Beyond project has encompassed and of the power and potential of the arts in times of crisis. But we cannot learn the lessons of the Pandemic whilst simultaneously undervaluing and underfunding the contributions of the arts and humanities that has presented this research in the first place. We need arts and humanities research now more than ever and it is time that we stop taking its contributions to the culture, society and economy of the UK for granted.
Dr Karen Gray records the reflections of the Lived Experience Panel members, who have been helping shape Pandemic & Beyond’s approach to research and public engagement. They discuss contributing to ongoing, urgent research initiatives and what lies ahead for creative research.
From its earliest moments, the Pandemic & Beyond team has benefitted from the skills and insight of our panel of lived experience advisors. They have shared their experiences, participated in workshops with researchers, advised our media team, produced artistic content, and given feedback on our films and website. Our panel are Ronald Amanze, Alexandra Kulanthai, James Oprey and Susanne Syme. You can find out more about them in the biographies below.
As our project nears its end, we asked them to share their thoughts on the project, their involvement in it, and on what should happen now.
What has it been like being part of Pandemic and Beyond?
An overarching impression for the group was of the sheer diversity of projects and research they have seen being undertaken, the amount of intellectual labour, and the multitude of collaborations involving diverse groups, individuals, and communities. Susanne noted also how everyone had seemed to be working together to find points of commonality, of shared experience and language. This in some ways mirrored panel members’ own journeys through the project.
Several of our panel described their sense of having been given an inside view into the research process, including all its stages and with all its rough edges. James remarked on how different and interesting this was to simply being presented with a polished product at the end.
Ronald told us how he had gained in confidence during his involvement. He had felt part of a team: “I didn’t have to struggle to be included, and that I found beautiful.”
Those members whose roles have involved shaping and advising on the Pandemic and Beyond films and commenting on the development of our website had been pleased to see researchers committed to delivering research projects with real and immediate benefits for individuals and communities. James noted how inspiring it had been in the films “to actually see participants taking parts in arts and creative activities and saying ‘this has kept me sane’.”
Our panel members spoke of quite direct and personal results of their involvement with the project. Alexandra is building on her Pandemic and Beyond experience, having recently taken on a role as mental health champion for her local council. Ronald, who has contributed his song-writing skills and ideas to the project, told us how this process has inspired him to “think more creatively.” He is also considering how he might now forge relationships with universities in his local area. Susanne is using what she has learned through the project to connect her into more nationally focused work to support those living in care or with frailty and dementia. She described her experience with Pandemic and Beyond as a part of a bigger “puzzle.” James noted his new-found (“eye-opener”) understanding of the value of the arts when it is social and shared, reflecting on how this has led him to think differently about his own life.
What should happen now with what has been learned?
“You’ve got the documentation, you’ve got the links, you’ve got the process from idea to making it all happen, to looking back on it and going ‘well, we could do it differently’ or ‘wouldn’t it be great if we’d done this as well’.” James described this resource, alongside the connections made between researchers, and their links with community partners, as the key postive outcomes of the project.
There is much work still to be done. “It needs to touch more people,” insisted Alexandra. Susanne agreed. For example, she would have liked to see more work tackling issues around ageism, and the experiences of those who were frail, elderly, or living with advanced dementia during the pandemic. Like Alexandra, her experience in care settings means she is acutely aware of how much residents there have missed of life during the pandemic, and how much they are still missing. She is actively looking to find ways now to bring the arts into those settings as another route through which to share the stories she has heard told through the research.
Our panel members are hopeful that lessons learned through research about the value of the arts and humanities will now be driven forwards; with the direct creative action and social connections born of isolation and crisis continuing to benefit individuals as they forge their lives post-pandemic: more “hope, and inspiration, and community!” as James termed it.
Ronald spoke clearly for all: “it’s like a new beginning, we need to continue to sow the seeds, to go out into different communities, to start new conversations.”
About the panel
Ronald Amanze is the founder of Talk Dementia, which has a social prescribing enterprise for well-being agenda and was originally supported and set up with the help of the Alzheimer’s Society (Dementia Voices). He is a Dementia Diarist with DEEP and an Ambassador for The Stroke Association. Ronald is passionate about better service provision for BAME communities in dementia services and for more involvement from BAME communities in dementia research. A music producer by background, he is also passionate about the role of the arts and creativity in improving quality of life and wellbeing.
Alexandra Kulanthai is an artist, singer (Member of Military Wives Choir North London) and an Indonesian traditional dancer; she works in Milman’s Resource Centre adult care setting for Harrow Council where she also leads activities for people living with dementia. Alexandra is a strong supporter of deaf communities and believes that learning BSL (British Sign Language) is very important for supporting these communities in this century and into the future.
James Oprey is a freelance filmmaker and producer. Working for both traditional TV/ news and programmes and on purely digital projects over the years has led to a wide range of work and experiences from filming in the Middle East to working with both animals and children! With a background in theatre and working as Resident Filmmaker at the RSC , the arts are a particular specialism, but interests in mental health, technology and various overlaps of these areas made involvement in the Pandemic and Beyond project a great opportunity.
Susanne Syme is a physiotherapist (GradDipPhys MCSP, with an MSc in Rehabilitation Studies) with a special interest in older adults. She has run her own rehabilitation business for 21 years, with an emphasis on falls prevention, dementia, frailty, stroke, Parkinson’s disease, evidence-based practice and individual’s lived experiences. During the pandemic she has worked in care homes focusing on keeping people active, physically, emotionally and socially.
Dr Chloe Asker (Post Doctoral Research Associate) reflects on methodologies in arts and health research that have become so important during the pandemic and shares some updates on the Culture Box project.
Introducing the Culture Box project
In recent years, there has been a growing interest in person-centred approaches to engage people with dementia in creative and art-based activities, such as dance, music, art, and poetry, to improve wellbeing, provide pleasure and enhance quality of life. People with dementia were disproportionately affected by the pandemic, with the condition increasing the risk of mortality. In England and Wales, 25% of COVID-19 deaths were those with dementia, and half of all COVID deaths in care homes in England and Wales were people living with dementia. The restrictions imposed by lockdown measures greatly affected lives in residency with a ban on family visits to care homes. This was coupled with requirements for residents to remain in their rooms due to staffing shortages. Suárez-González et al. (2020) describe the effects of this situation leading to ‘confinement disease’, as the ‘effect of leaving people alone in their rooms due to staff shortages with no assistance for drinking and eating.’They argue that this may have been more deleterious than the virus itself.
Culture Box was created in response to the impacts of the pandemic and sought to alleviate some of the negative impacts on dementia patients, particularly the rates of social isolation and loneliness that have been heightened due to the lack of visits and confinement. Figures from Alzheimer’s Society UK showed that 80% of 128 care homes reported that the lack of social contact is causing a deterioration in health and wellbeing for residents with dementia (Alzheimer’s Society, 2020). Our project – Culture Box – designed and distributed pandemic guidance and creative activities to people with dementia in care homes, with a particular focus on the inclusion of BAME communities. The activities aimed to support the health and wellbeing of residents to alleviate social isolation and loneliness during the COVID-19 pandemic. Activities were a mixture of online and physical resources. Over the course of a year (December 2020-December 2021), a physical culture box was mailed out to the care homes each month, full of exciting activities and resources.
The Culture Box Research Team
The research team of 12 academics, practitioners, and producers is led by Professor Victoria Tischler, Associate Professor at the University of Exeter’s European Centre for Environment and Human Health, her research focuses on creativity, mental health, and multi-sensory approaches to dementia care. Working with Victoria as co-investigator is Dr Hannah Zeilig. Hannah is a senior research fellow at the London College of Fashion, University of the Arts London, and her work specialises in arts and gerontology. Dr Julian West, of the Royal Academy of Music in London, works alongside Hannah as a co-investigator on the project. Culture Box also enrolled the help of practitioners and producers, including Dr Errol Francis, CEO of Culture&, an arts organisation that works to open up the arts and heritage sector to a more diverse workforce and audience. Additionally, we have recently welcomed a new member of the research team, Dr Chloe Asker – who has specialisms in participatory, creative, feminist and embodied approaches to research from her completed PhD research. They are working on the analysis of the interview and survey data along with supporting the organisation of the Culture Box Show.
Artwork by Martin Jordan, commissioned by Culture Box for the monthly boxes during the project
The Culture Box Show
The Culture Box Show is a virtual interactive exhibition, with a programme of special artist commissions, and virtual and remote activities for people living with dementia in care homes and care staff. It is a hybrid programme, with the ability for people to experience it online as well as visiting the space. The show is participatory with the commissioned artists responding to the work done by the residents and care staff, it is intended to be an end-of-project event to celebrate the work undertaken during 2021.
The research team worked closely with Culture&, an independent arts and education charity, to put together a programme of special artist commissions, virtual, and remote activities for people living with dementia in care homes and care staff. The programme marks the end of the yearlong AHRC funded research project based at the University of Exeter.
Four artists have been commissioned to produce interactive and participatory work for the Culture Box Show.
“Bringing the Outside In” by Kate Munro
Kate’s commission is inspired by the power of nature to improve wellbeing and a sense of connection. She is inviting residents to send her three names of their favourite flowers, which she will use to create a response from.
“Fold” by Helena Tomlin
FOLD will take the form of a series of rice paper artworks mounted on fabric and made using paint and printed collaged elements. They will be made so that they will be easy to display in the care homes. As part of the process of making this piece I will experiment with different types of folding, working with the materials to find the best way to reflect the concept of the Deleuzian fold as described above. I am interested in developing a ‘performance’ element in the viewing the work (the possible folding and unfolding of the pieces) as this is part of my response to respecting the complexities of memory. I will make the installation in my studio with careful instructions on how to assemble and display in the care home.
“Personal challenges of the pandemic” by IIrumva Isaac
Contemporary artist IIrumva Isaac, will explore the challenges a few of the many narratives of his community’s mental health during yet another lockdown in Kigali, Rwanda. Cohabitating, sharing space, and things without the habitual 9-5 or spontaneous visit to a friend. the lockdown reshapes the relationships we have with our space, our belongings and housemates. Our mental states play a key role in the progression of our relationships, and so the progression of our lives.
In his attempt to bring people closer in times of ambiguous distancing; IIrumva compiled a few of his art pieces to touch on mental health as our bodies and minds adapt to lockdown, facemasks, remote work, and PCR tests among other things that came with this global pandemic. IIrumva lives in an urban neighbourhood right in the heart of Kigali, near the Kigali Convention Centre landmark, known as mu Rugando. Here he has observed the different ways in which the residents behave, which he is convinced everyone no matter where they live or where they are from must have in common. Exploring the theme of mental health, his intent is to create pieces that build up to an unveiling of mental health issues in his nuclear community.
“Mountains of the Mind” by Polly Townsend
Polly’s commission takes inspiration from the quantitative data from the Culture Box survey at the beginning of the project. It is a participatory intervention that invites participants to imaginatively paint over her interpretation of the data, giving life, colour, and vitality to it. Her work is inspired by the beauty and awe of mountains – the data offering a way to visualise the topology of land masses.
The Show will be disseminated to participating care homes in boxes containing instructions, information, and the relevant materials. We look forward to sharing the work from the artists and participants!
Learning Lessons from COVID-19 Conference
In April 2022, the research team took part in ‘Learning lessons from Covid-19: Hearing voices from multilingual cultural and vulnerable communities’ conference at the School of Oriental and African Studies (SOAS) University, London. Victoria and Hannah, two lead academics on the project, presented a paper entitled “Culture Box: Lessons from a novel pandemic-responsive intervention for older people with dementia living in care homes”. This focused on the lessons learnt from undertaking the project, including reflections on ethics, the methodological approach, and preliminary research findings from the T1 survey data and interviews.
Hannah provided some reflections on the conference, noting the audience enthusiasm for the piece, Hello Love by Akeim Toussaint Buck:
The paper was well received by the conference delegates. In particular, the inclusion of Akeim’s film was appreciated and livened up the morning session. Akeim’s music and movement contrasted with other presentations and provided another example of how the ‘arts’ can communicate well across a range of audiences and environments.
Victoria and I were both interested in other presentations from around the world about how covid-19 has been experienced, it was great to understand our own work within a much wider context.
The conference also made Victoria reflect on the vulnerable nature of care home staff during the pandemic, and during this project. Experiences of staff vulnerability, stress, and anxiety are present in the interview data. Thus, more attention needs to be paid to the vulnerable and precarious position of care home staff during COVID-19. This issue is discussed in depth in Masterson-Algar et al.’s (2022) article on the impact of the pandemic on care and quality of life of people with dementia and their carers. Their scoping review points to the high levels of stress, exhaustion, burden, and isolation experienced by carers.
Next stage: the T4 Survey
The team have recently launched the final project survey to residents and care staff. The survey asks questions about the participants’ overall reception of the project and seeks to understand whether there was improvement in residents’ wellbeing since taking part in the project.
The survey will close in mid-May and the research team look forward to receiving some more data on outcomes of the project and feedback!
This blog shares insights from an ongoing research project that explores how the health systems response to the coronavirus (Covid-19) pandemic affected children and young people with long-term conditions in the UK. Based on a scoping review of academic studies, and subsequent focus groups with healthcare practitioners, parents and carers, the project examines the impact of the pandemic on healthcare delivery and access, the potential of innovative practices developed during the pandemic, and how service restrictions have affected children’s health.Here, Jenny Greenwood (Kings College London) and Sapfo Lignou PHD (Project Lead, University of Oxford) reflect on the first stages of the research and summarise some of the concerns emerging from their work.
When Covid-19 emerged in the UK in March 2020, and as cases proceeded to rise dramatically over the subsequent weeks, NHS England was required to react quickly. Healthcare resources were redeployed to respond to local Covid-19 challenges . The UK government instructed GPs to conduct remote triage care to patients and in both the first and second wave of the pandemic community teams were redeployed to acute adult services. The government asked the public to stay at home wherever possible and people considered clinically vulnerable were told to shield . Published evidence suggests that the government shielding directive severely impacted children and young people’s access to care. This was confirmed in our discussion with child healthcare professionals. As one community paediatrician noted, at the start of the pandemic there was a long list of vulnerable children instructed to shield, meaning health professional’s access to this highly vulnerable population was worryingly limited. Another paediatrician went on to tell us that this list was subsequently modified, however this indicates a failure to consider the healthcare needs of children with chronic conditions within the emergency response. The combination of prioritising the emergency response to Covid-19 and government guidance to the public had a significant effect on the provision of, and access to, healthcare particularly for children and young people with medical complexities .
There are 1.7 million children and young people with chronic conditions such as asthma, epilepsy and diabetes in England . The health and wellbeing of these children relies on close medical monitoring, regular routine appointments and thorough education of both the children and their caregivers on the management of symptoms and treatment plans, all of which were significantly hindered during the pandemic. The relative shut-down of children’s healthcare services can be understood in terms of the incredible strain on NHS personnel and resources but still requires close examination. This project aims to understand and bring to light the ways in which this vulnerable group of children and their families were affected by the changes made to the healthcare system, and to provide ethical guidance for how the needs of these children should be considered in future emergencies of this kind. The work is informed by existing research on the topic as well as the views of healthcare professionals and parents and carers of children with chronic conditions.
Following the guidance issued to healthcare services and to the public, the impact on children and young people’s access to healthcare became immediately apparent. Because GPs were asked to limit contact with patients, the delivery of primary care changed significantly, with contacts below the average of the previous three years . Parents reported difficulties getting hold of their GP as well as trouble acquiring prescriptions . The number of children presenting at A&E also decreased . Given this, health professionals were highly concerned about the potential for delayed or missed diagnoses, particularly worrying in the case of diabetic ketoacidosis which is a severe and life-threatening complication of diabetes which requires early diagnosis to begin treatment . There are grave concerns about the delay to diagnoses of cancer, which like diabetes requires swift diagnosis and treatment . Professionals estimated that approximately 3291 – 3621 avoidable cancer deaths among adults and children that will occur over the next five years due to missed or delayed diagnosis .
There were mass cancellations of children’s surgery and other medical investigations due to the health system’s prioritisation of the Covid-19 response. Children with epilepsy were affected by the significantly reduced use of EEG, and those with inflammatory bowel disease were often diagnosed without the usual endoscopic assessment because of the reduced use of endoscopy at over 90% of centres across the UK [5, 9]. Paediatric surgery fell to 12–20% of normal activity in the most overwhelmed parts of the UK  and between April – Sept 2020 surgical activity for epilepsy was limited or stopped entirely . Children and young people with inflammatory bowel disease were not offered their usual routine monitoring appointments which detect deterioration in their condition.
Further concerning evidence that emerged from the review related to the increase in disease severity amongst children and young people with chronic conditions. Many of those with epilepsy experienced more regular and severe seizures due to difficulties accessing medicine, reduced access to health professionals and the stress and sleep problems associated with the pandemic . Because of the differing risk factors associated with the conditions in question, the level of impact is not consistent across them. Indeed, according to the evidence from our review, not all conditions were adversely affected during the pandemic. Many children with asthma experienced a decrease in symptom severity, likely due to a reduction in air and road traffic, restricted travel, shielding and social distancing . However, a contrasting view was given by a consultant in paediatric respiratory medicine, who said that while many people with asthma experienced less severe symptoms, there is a subgroup of complex patients who “spiralled out of control in the last 18 months”. They reported that often these were patients with co-morbidities such as “breathing pattern disorder, anxiety, social inequalities and safeguarding issues and virtual appointments were not adequate to pick up early signs of deteriorating health or family disengagement.”
It was not just a matter of frequency of reporting, the nature of healthcare delivery transformed. One of the most significant changes to the provision of children’s healthcare is in the use of telemedicine, which has been widely used for the care of children with chronic conditions including asthma, diabetes, neurodevelopmental conditions. It has been particularly important for children and young people with mental health difficulties who otherwise would not have had access to their usual psychological support . Digital exclusion has been a concern to many professionals in various fields during the pandemic, but it was particularly problematic in areas of children’s healthcare. While the introduction of telemedicine improved access for many children and their families, it also shone a light on existing health inequalities, perpetuated by the reliance on access to technology and digital understanding . It also excluded many children and young people with disabilities such as hearing problems, or neurodevelopmental difference such as autism spectrum condition many of whom found accessing support in this way extremely difficult . The healthcare professionals we spoke to referred to the pressure they felt to keep a significant number of appointments virtual, resulting in an “increased risk of harm and sub-optimal care for young people” according to one sleep consultant. This consultant expressed concern that it is difficult to predict which children or young people will be most affected by the lack of face-to-face care. Although better than nothing in some cases, telemedicine is by its nature limited and may have resulted in missed or delayed diagnoses, particularly in the case of diabetes and cancer, which could have a serious impact on mortality rates [8, 16]. A consultant in paediatric respiratory medicine told us that some of weaknesses of the existing virtual system will be improved by new technologies being for remote monitoring of patients’ physiology and adherence, however they went on to explain that multiple barriers have delayed their implementation.
The absence of normal social contact with education or social care professionals has potentially serious implications for safeguarding. Concerns emerged from our scoping review about the number of children and young people who experienced maltreatment or domestic violence that was unknown to professionals . The professionals in our focus group echoed these safeguarding fears. They told us that at the start of the pandemic they had raised concerns that safeguarding referrals would fall with schools closing, health visiting services moving to a virtual model and parents’ reluctance to seek healthcare advice, and this was borne out in the data.There is also significant concern about the reduction in psychological support available during the pandemic, particularly concerning for children with chronic health conditions who are more likely to experience psychosocial difficulties . A clinical director of community paediatrics who took part in the focus group explained that he had seen a regression in the strength, ability and skill-level of children with neuro-disabilities because of the loss of usual school-based activities.
Another concern that emerged from our focus group discussion with healthcare professionals was around the long-term impact of restrictions on parent care during visits to the Neonatal Intensive Care Unit. A consultant in that department raised a concern that the impact on families of restricted visitations will not be known for many years, but that these NICU patients will likely comprise the long-term condition patients of the future, and their care and the care of their families was diminished by the pandemic response.
Covid-19 has marginalised child services to an even greater degree than before. A clinical director of community services noted that it was difficult to balance the needs of children with the requirement to prioritise Covid-19 patients. Professionals endorsed “the need to take a different approach for children’s community services” and a letter was sent to ministers in the winter of 2020 requesting that children’s therapists not be redeployed in the next wave of the pandemic, but they did not “appear to have weight in decision-making at the point it came out.”
This marginalisation has had serious consequences. The evidence that emerged from our review and the input we received from the healthcare professionals indicate that children’s health and wellbeing have been neglected during the pandemic. There is a concerning amount of unmet need among children and young people with chronic conditions, which will already have caused increased disease severity and greater health risk across various physical and mental health conditions . Although telemedicine helped meet the needs of many children, language barriers, disability, neurodiversity and digital disparities means many populations have been under-served .
Moving forward, policy makers need to recognise the special needs of child services. The relatively small number of studies exploring the impact of health systems changes on children during the pandemic suggests that more careful consideration of their needs is essential, particularly when evaluating the pandemic response. The lack of research into child health does not only apply to the subject of Covid-19 but is a wider problem suggesting the potential of bias in healthcare planning and the development of information technology . More research is needed to understand the effect of the health system changes on timely diagnosis and effective treatment and the impact of this on paediatric patients. Understanding this is a vital step towards a more effective and equitable health system response to future emergencies.
We have gathered evidence about changes to the delivery of healthcare for children with chronic conditions, and its impact on their physical and mental health, both from emergent literature and health professionals’ feedback. Our findings will inform a further piece of work designing an ethical framework that considers the needs of children and young people with chronic illness in the prioritisation processes required in the pandemic context and beyond.
Jenny Greenwood, MSc, is a researcher at the Department of Women and Children’s Health, King’s College London.
Sapfo Lignou, PhD, is a Senior researcher in Bioethics, Ethox Centre and Wellcome Centre for Ethics and Humanities, Nuffield Department of Population Health, University of Oxford.
4) Mansfield K, Mathur R, Tazare J, et al. Indirect acute effects of the COVID-19 pandemic on physical and mental health in the UK: a population-based study. The Lancet Digital Health 2021; 3 (4) e217-e230.
5) Thorpe J, Ashby S, Hallab A, et al. Evaluating risk to people with epilepsy during the COVID-19 pandemic: Preliminary findings from the COV-E study. Epilepsy Behav. 2021; 115:107658.
6) Isba R, Edge R, Jenner R, et al. Where have all the children gone? Decreases in paediatric emergency department attendances at the start of the COVID-19 pandemic of 2020. Arch Dis Child 2020;105:704.
7) Elbarbary N, Jeronimo dos Santos T, de Beaufort C, et al. COVID-19 outbreak and paediatric diabetes: perceptions of health care professionals worldwide. Pediatr. Diabetes 2020; 21(7), 1083-1092.
8) Maringe C, Spicer J, Morris M, et al. The impact of the COVID-19 pandemic on cancer deaths due to delays in diagnosis in England, UK: a national, population-based, modelling study. Lancet Oncol 2020; 21 (8) 1023-1034.
9) Ashton J, Kammermeier J, Spray C, et al. Impact of COVID-19 on diagnosis and management of paediatric inflammatory bowel disease during lockdown: a UK nationwide study. Arch Dis Child 2020; 105:1186–1191.
10) Kursumovic E, Cook TM, Vindrola-Padros C, et al. The impact of COVID-19 on anaesthesia and critical care services in the UK: a serial service evaluation. Anaesthesia 2021; 76, 1167–1175.
11) Reilly C, Muggeridge A, Cross JH. The perceived impact of COVID-19 and associated restrictions on young people with epilepsy in the UK: Young people and caregiver survey. Seizure 2021; 85:111–4.
12) Creese H, Taylor-Robinson D, Saglani S, et al. Primary care of children and young people with asthma during the COVID-19 era. Br J Gen Pract 2020; 528-529.
13) Serlachius A, Badawy SM, Thabrew H. Psychosocial Challenges and Opportunities for Youth With Chronic Health Conditions During the COVID-19 Pandemic. JMIR Pediatr. Parent 2020; 3(2):e23057.
14) Williams R, Jenkins D.A, Ashcroft DM, et al. Diagnosis of physical and mental health conditions in primary care during the COVID-19 pandemic: a retrospective cohort study. The Lancet Public Health 2020; 5 (10) e543-e550.
15) Ogundele M, Ayyash H. Effect of covid-19 lockdown on the configuration and implementation of services for children and young people with neurodevelopmental disorders in the UK. 2021.
16) Wirrell E, Grinspan Z, Knupp K, et al. Care Delivery for Children With Epilepsy During the COVID-19 Pandemic: An International Survey of Clinicians. J Child Neurol. 2020; 35(13), 924-933.
17) Ashikkali L, Carroll W, Johnson C. The indirect impact of COVID-19 on child health. J Paediatr. Child Health 2020; 30:430–7.
18) Hussein I, Xiaoxuan L., Nevine Z. Health data poverty: an assailable barrier to equitable digital healthcare. The Lancet Digital Health 2020; 3(4), e260-e265.
This response to the COVID-19 inquiry draft terms of reference consultation is based on evidence drawn from a meta-analysis and ethics review of pandemic impact research, which has been jointly commissioned by the UK Pandemic Ethics Accelerator and Pandemic & Beyond, two UKRI/AHRC funded initiatives. The review is intended forsubmission to the UK COVID-19 inquiry and draws on evidence from 26 out of 77 research projects funded by the Arts and Humanities Research Council (AHRC) as part of the UKRI’s emergency call, all of which are represented under the Pandemic & Beyond umbrella. These initiatives are pioneered by upwards of 325 researchers in multidisciplinary teams, representing collaborations from 39 different universities, cultural institutions, think tanks, and research agencies. They examine and assess impacts of the public health crisis and government interventions, ranging from the design and use of public health technologies; the scope and impact of government guidance and messaging; the employment of legal frameworks; governance; healthcare delivery; the cultural sector and creative industries; as well as the lived experiences of workers, marginalised or vulnerable people, and front-line healthcare professionals.
Response to the draft terms:
Please explain why you think the draft Terms of Reference do not cover all the areas that the Inquiry should address.
The remit to examine the “COVID-19 response” only for what “lessons” can “inform the UK’s preparation for future pandemics” falls short of addressing the pandemic’s detrimental and critical impacts. All evidence incorporated in the review reinforces the importance of examining the COVID-19 pandemic as a “syndemic” (Horton 2020) – the disease has transmitted through, reinforced, and starkly illuminated, pre-existing structural and social inequalities in the UK. The response to COVID-19 cannot be examined separately from these issues.
Recommendation: The inquiry does not have the ability to solve these problems, but it can and should act to set an ethical agenda for UK policy moving forward by formally recognising the way that pandemic-related harms interlock with longer-standing social and structural harms.
This response examines shortcomings in the proposed draft terms via two categories:
Omissions:areas where substantial harms or impacts identified by research projects in the Pandemic & Beyond portfolio are clearly not encompassed by the proposed terms.
Ambiguities: categories where substantial harms or impacts identified by researchers might be included, but which are not clearly encompassed by the categorical terms.
Democratic governance. ￼￼Three projects (Good Governance, CRVO, Lex-Atlas) directly addressed the conduct of the executive, and/or examined the conduct or implementation of pandemic governance and found substantial concerns. Another eight projects raise points relating to the degradation of democratic governance through failures of transparency and disregard of public trust, as well as examining the implications of new partnerships in governance between the state, public sector institutions, and private/third sectors created or extended by the pandemic (e.g., Mutual Aid).
Human Rights. Five projects (Care Homes, Good Governance, Lex-Atlas, CRVO, OMDDAC) have highlighted how the pandemic response has circumvented or avoided proper consideration of human rights principles and protections, in areas ranging from legislative conduct, processes of parliamentary scrutiny, the design and deployment of public health technologies, to care home management. If human rights are not a focus of the inquiry it is likely that wider insidious harms to human rights will be obscured.
International Solidarity. Two projects (Equitable Vaccines, Good Governance) highlight the failures of international cooperation and the UK Government’s responsibilities from its existing international legal commitments to support fair vaccine access and initiatives. The harms to international solidarity, and the role of the UK government therein, should be examined by the inquiry because they resulted from pandemic policy, and impacted on the pandemic’s domestic course.
Data-driven decision making. The UK Government’s Data Strategy is clearly informed by the experiences of the pandemic. COVID-19 impact projects have appraised digital innovations and data-driven thinking across governmental contexts, as well as in areas, such as the public libraries, and cultural sector, where digital infrastructures are financed by public money. Much of this research highlights negative or ambivalent effects of digital innovations (e.g., New Normal, Online harms, OMDDAC). The pandemic experience has important implications for future investments in digital infrastructures as well as the data strategy.
Include democratic governance under the terms of the review.
Human Rights protections should be a focus for the inquiry.
Recognise International Solidarity as an important domestic issue.
Encompass new insights on data-driven decision making.
￼The Language of “Protected characteristics”: The inquiry has promised to “consider any disparities evident in the impact of the pandemic and the state’s response including those relating to protected characteristics under the Equality Act 2010”.
Discussion: Technically, this would include a range of groups or communities identified by the Pandemic & Beyond portfolio as suffering discrimination because of the pandemic or government interventions, such as children and young people, ethnic minorities, and cultural-language communities. However, the terms of the inquiry (expressed in clause 1) are focused on social and economic zones; they are not people-centred. Projects from the meta-analysis have highlighted instances of where vague, or overly technical and complex language in guidance excluded marginalised communities.
Risks: There is a substantial risk that the reluctance to name specific groups or communities in order not to prejudge or accidentally exclude some groups may unintentionally exclude those who the inquiry has vowed to protect because they do not see themselves as “protected characteristics”. Research projects in this review note particularly the harms to children and young people, ethnic minorities, and the vulnerable, disabled and elderly.
Recommendation: Use inclusive and people-centred terminology in framing the terms of inquiry because this will be the basis of all future messaging in relation to the inquiry itself.
￼Workforces. The inquiry’s suggested terms encompass the impacts of the pandemic, and health interventions on “health and care sector workers, and other key workers during the pandemic”.
Discussion. These terms would invite consideration of the harms experienced by key workers, such as healthcare and educational professionals, which have been highlighted by many projects in the review (e.g., Nursing Narratives,Online harms, Stay at Home Stories). However, the Pandemic & Beyond portfolio also highlights how the social restrictions, new working practices, and government responses impacted on workers across the cultural sector and creative industries (e.g., Culture in Crisis). It might have been the inquiry’s intention to include these experiences within various other categories of the draft terms, such as in “the closure and re-opening of the hospitality sector, retail, sport and leisure sectors, and cultural institutions” or as part of the “economic response to the pandemic”. However, this is not clear and the draft terms are implicitly weighted towards economic and business interests in the way they are framed.
Risks. There is a risk that important workforce impacts, which have relevance for future investments in welfare planning, funding administration and education or skills support programmes, will be lost.
Recommendation. Specify in clear and categorical language that understanding the impacts of the pandemic’s various health and economic interventions on the UK workforce across a range of sectors is within the scope of the review.
Experience, Hardship and Suffering
Q. How should the Inquiry be designed and run to ensure that bereaved people or those who have suffered serious harm or hardship as a result of the pandemic have their voices heard?
The inquiry has promised to “listen to the experiences of bereaved families and others who have suffered hardship or loss as part of the pandemic” but has recognised its limitations and that it “will not investigate individual cases of harm or death in detail.”
Discussion. The question of how to draw “lessons” from individual experiences, when not all can be heard, is particularly difficult. Whilst we expect the inquiry to draw on testimony from a wide range of community representatives, charity and non-governmental organisations, faith networks, or other grass roots networks, the inquiry will also have to collate existing evidence regarding the experiences of people who have suffered hardship and loss and determine where supplemental information is necessary to address experiences of hardship and loss. The research within the Pandemic & Beyond portfolio draws on a wide range of research into first-hand personal experiences of bereaved people, families, and communities. They conducted research through partnerships with grass roots organisations and other stakeholder groups and used a variety of tools designed to empower individuals and communities to contribute their perspectives to research, including surveys and focus groups; deliberative research and citizen juries; interviews and auto-ethnographic research (e.g., participants recording pandemic diaries), and co-creative and participatory methods (e.g., action research).
Risks: There is a risk that the inquiry may not be effective in its determination to include experiences of loss and suffering. The potential research labour involved in the inquiry is substantial and it is not clear if the inquiry has the skills or resources to take proper and considered account of individual or community level experiences. The Pandemic & Beyond research demonstrates that a range of qualitative methods are critical for analysing and understanding lived experience and that partnerships with grass roots and community networks are intrinsic to inclusive research practice. Yet the research in the portfolio has highlighted that the use of qualitative skills cannot be guaranteed in pandemic decision making (e.g., OMDDAC) and that public health engagement initiatives have not used appropriate expertise to connect with communities (E.g., Cultural Translation, Co-design).
Recognise that the inquiry has a substantial task ahead and should be properly equipped and resourced with the appropriate skills to fulfil its objectives to allow individuals and communities who have suffered to have their voices heard.
Collate existing evidence from existing UKRI-funded impact projects to provide a rigorous baseline of evidence upon which the inquiry can build.
Establish a network of experts and specialists, from UK universities and communities, to advise on outreach, public engagement, and the process of hearing and the submission of testimony to ensure an inclusive and ethical practice.
We include a select list of projects with a focus on lived experiences of the pandemic. Further information can be found at https://pandemicandbeyond.exeter.ac.uk or follow us on @PandemicBeyond.
Horton, Richard. 2020. ‘Offline: COVID-19 is not a pandemic’, The Lancet 396, September 26.
Dr Eleanor O’Keeffe is working on the meta analysis and ethics review of pandemic impact research to submit to the inquiry, based on selected projects from the Pandemic & Beyond portfolio. The work is commissioned by the UK Pandemic Ethics Accelerator and Pandemic & Beyond.
Dr Eleanor O’Keeffe worked as Post Doctoral Research Associate on the AHRC funded project British Ritual Innovation under COVID-19. Here, she discusses some of her research into digital adoption in response to the pandemic.
Sequoia Nagamatsu’s 2022 novel How High We Go in the Dark, which was started before the COVID-19 pandemic took hold, offers us a bleak vision of a post-flu pandemic economy entirely pivoted towards death. Corporations deal with dying and the disposal of bodies. Funerary insurance has replaced the monetary system, and euthanasia fairgrounds help parents manage the emotional toll of mass terminal illness amongst children. Most people in the novel have some role in the death economy, managing bereavement or bodies, including one character who works on:
Approving memorial profile requests, answering messages for the deceased on WeFuture…It can be emotionally draining work, though I still take pride in helping people through their pain. My floor supervisor is named Dennis and he has a tough role managing shadow profiles. He assumes the personality of the deceased and continues to post updates and chat with their friends and family.
Like all speculative fiction, Nagamatsu’s work meditates on contemporary truths, such as the growth in corporate deathcare and, of course, digital memorialisation. It has been over a decade since Tony Walter reviewed how the internet had changed dying and mourning, elucidating and enhancing new belief structures and practices. Since then, digital means and methods have become ingrained in our culture. More people continue bonds with their loved ones via the internet through social media sites – a phenomenon which social media companies quickly had to respond to. It could be assumed, therefore, that a pandemic that so disrupted our social and ritual lives, and confronted us with mass death, would both employ, and even extend, the possibilities in the digital beyond.
The extent of digital acculturation and innovation, as well as its implications, has been a key research question for so many projects in the Pandemic & Beyond portfolio. We’ve seen increased adoption of digital means of working and communicating in healthcare, museums and heritage, library services, and the creative industries, and much of the Pandemic & Beyond research suggests that the impacts have been complex and ambiguous. This is especially the case with online memorial engagement, which is so difficult to scope. “Digital memorialisation” can refer to an array of practices, utilising different online functionalities and technologies. How the pandemic has impacted across these facets will be teased out in future work in information and communications, death, religious, and memory studies. Here, I point to a few areas of change, starting with Nagamatsu’s depiction because it steers us away from assumptions that digital formats necessarily privilege grass roots or vernacular cultural action. What happens on the internet also relies on financed infrastructures, resources, and notions of authority.
Undeniably, there has been greater recourse to online means to manage bereavement. Estimates would put the UK’s ‘silent epidemic’ at well over 1 million people and rising. Like other public health services, bereavement care has developed new and increased online facilities. In addition, the facility of the web for those who experience particularly difficult bereavement circumstances, known before the pandemic, has proven especially important for COVID-19.Research demonstrates the value of social media platforms for building self-sustaining and self-mobilising support networks for grief. Emily Harrop recently noted 29% of a bereavement survey cohort referencing the importance of self-help groups on social media for supporting them with difficult feelings of isolation and difference. Faith communities, too, have reached out to express support and solidarity through online networks. More people who have lost loved ones during the pandemic also utilised memorial pages on established providers, such as MuchLoved.com, with an even more significant uplift noticed in people engaging with their functionalities to express sympathy and love.
In theory, the relative accessibility of web tools, and availability of web spaces, might have generated a verdant and highly variated landscape of memorialisation online in response to COVID-19. This has simply not happened. This may be in part because there has not yet been a popular “memorial boom” in response to the pandemic and it is unclear whether one will emerge. On one hand, we see a burst of memorialising activity, represented by the significant work of the National Covid Memorial Wall and the COVID-19 Bereaved Families for Justice or the Marie Curie charity-led National Day of Reflection, which contrasts with the absence of such memorialising activity one hundred years before: there was no such national memorialisation for the “Spanish Flu”. Social media has been crucial for both these projects in supporting their social and political activism. But their popular cut-through and the scale or nature of public participation is (as yet) unclear.
COVID-19 memorialisation has been underway, however. There has always been a high expectation that there would be memorials for the pandemic in the UK, because it’s the established communicative tool for expressing solidarity with the bereaved and those who have taken the burden of COVID-19, and also because it’s ingrained into local and national identities. In the first eight months of the pandemic, I identified 161 memorial projects begun or completed, created by local authorities, NHS Trusts, funerary companies, or partnerships between them. These have looked to memorial forms which offer a swift and low cost enaction. Memorials have thus synergised with existing environmental strategies (e.g., tree planting), as well as budgets for improvements for green space amenities – two factors that have influenced the turn to natural symbolism, as much as the desire to capture something of the lockdown experience. A sizable proportion (17%) have attempted to build online memorial spaces for communities, such as “virtual” books of remembrance.
By moving online, we do not necessarily pass memory work from the artist or sculptor over to a radical digital “creative”, although this is of course possible. Examples of artists using technologies or online facilities to create responsive memorial spaces are also evident. Resources are, after all, intrinsic to memorial practice and state investments in digital infrastructures have also paid out in memorial work, such as for the National Police Memorial Day observance in the pandemic, or the production of local authority books of remembrance. Online memorialisation spaces can reinforce tradition, hierarchies, and state perspectives, offering more ways to experience state institutions as much as encouraging grass roots action: we may have had more online portals accepting condolence messages in response to Prince Phillip’s death than for COVID-19. Agencies that have built memorials online have been those possessed of digital infrastructures, but also cultural authority. Consensus over the legitimacy of the memorial maker, matters too. Cathedrals have become significant interlocutors in online memorialisation during the pandemic – a role facilitated by strategic developments in recent years, which have redirected partnerships and heightened the sense that heritage, rather than religion, is a major public purpose.
The online book of remembrance Remember Me set up by St Paul’s Cathedral, which now contains over 10,000 memorial submissions, is the most prominent example of this. It is the first digital space in the UK to render a national symbolic site of memory in relation to an emerging disaster, but we can also point to Manchester Cathedral and Belfast Cathedral, which have created similar initiatives in relation to regional and devolved national experiences through their own partnerships. This development is part of the broader operation of heritage in the “the new mediascape”: we can see similar digital outputs for the centenary of the First World War, driven not only by the increasing digital strategies of museum work, but also by cultural institutions’ sense of relevance and an increasing focus on emotions as a mode of engagement. With their established authority in our national memory bank, these interlocuters have the power to shine through what Andrew Hoskins has described as the new grey of memory, the fog of data overload. Their influence on how we see COVID-19 going forward should not be underestimated.
Can these institutions respond to the special tasks of pandemic memorialisation? Expectations are markedly different to what they were a century ago. The value of individual human life and its equal moral worth is recognised and protected by law, which generates the raw emotion behind the rhetoric of “not a statistic”. Acceptance of the need to individualise deaths in response to shared and national tragedies is clear enough in the design of online “books of remembrance”. But memorialisation has also become a way of performing citizenship, articulating rights, and advocating for political change. The pandemic has confronted all of us with the bleakness of our social health inequalities. The substantially greater risks faced by Black and Brown health workers, and the higher rates of death in ethnic minorities, require not only acknowledgement but substantial social and political change. The public seem very united that these egregious inequalities highlighted by the pandemic are a pressing ethical concern.
St Paul Cathedral’s decision not to countenance politics within its memorial submissions, and its commitment to apolitical rhetoric so often attached to memorial spaces, suggests unwillingness to handle these issues overtly. This can backfire, as some conservative opinion has seemingly shown a greater warmth towards the National claims of Remember Me, which seems not to overtly demand justice, against that of the National Memorial Wall, where the cry for it is clearly apparent. Yet, in other ways, St Paul’s demonstrates that what might be seen as an establishment institution (the ‘top down’) manifests a popular, democratic appeal through digital media and generates consensus in new ways. The transformation of such institutions is also a motor for social change. Remember Me was grounded in Christian ethics and a tangible commitment to social justice. It built on its relationships with interfaith networks, as well as its established role in memorialisation of the Grenfell Fire. During COVID-19, it developed informal partnerships with bereavement charities and communities, such as the Yellow Hearts campaign.
Remember Me has not entirely achieved all its ambitions to present an interfaith and pluralistic space of remembrance, for reasons I will address elsewhere. There is clearly a diversity there, but there are also cultural biases and exclusions evident in its submissions. The functionalities of Twitter or Instagram do not seem to harness wider social solidarity or make the memorial ‘dialogic’ in a way that is so clearly seen in public memorials. However, a significant number of Remember Me submissions can be seen as justice-seeking – pushing us to recognise the equal value of elderly lives lost, for instance, or advocating for those who lived with the burden of dementia, an important co-factor in COVID-19 deaths. The traumas of isolated dying and grieving, too, are very evident in this memorial, as is a sense of family solidarity. If we apply those same estimates for bereavement (nine people for every one death), we might say that 90,000 people found meaning or solace in this memorial, and that socio-political action and expression was important to many of them.
We can see from this example, as well as the books of remembrance for George Floyd and Noah Donohoe, that institutions and local governments are becoming more responsive to important issues, such as racial injustice. Building inclusivity and diversity into digital memorial work, however, requires qualitative expertise, as well as technical decision making. There is still a considerable amount we don’t know about who engages with this genre of memorial, which is so deeply grounded in historic ideas of the nation, and who does not. The cultural responses seen in Remember Me are somewhat different to other comparable forms, such as online cemeteries. But there is a good deal we can learn about how social and cultural forces interact with, or are channelled by, the values, design, and communications choices made by multidisciplinary teams; and about the impact of such work on organisations and their staff. If cultural institutions have a role to play in future memorial work online, and there is every likelihood that their strategic directions will push them along this route, this demands a regrouping of expertise, as well as scrutiny.
Our individual digital afterlives are increasingly subject to debate. We must pay equal critical attention to the substance, design, and preservation of our collective afterlives.
 Verdery AM, Smith-Greenaway E, Margolis R, et al., referenced in Pearce C, et al. BMJ OpenAccess, 2021, estimated kin loss bereavement at nine people for every death.
 Dr Emily Harrop, “Grief and (dis)connectedness during Covid-19: findings from a national survey of people bereaved during the pandemic”, Connecting in the time of COVID-19, City University, 10 March.
 Prof. Andrew Hoskins, for instance, discusses Rafael Lozano- Hemmer’a A crack in the Hourglass, An ongoing COVID-19 Memorial (Brooklyn Museum) to unpack the relationship between memory and forgetting. Hoskins, ‘Forgetting Covid’, Connecting in a time of COVID-19, workshop at City University. 10 March 2022.
Professor David Tollerton has led on National Day of Reflectionand the COVID-19 pandemic: Lessons from past memorialisation. Here, he shares some findings from his report into COVID-19 memorialisation, which was published last week.
The global COVID-19 pandemic is an event of immense scale in terms of loss of life and societal impacts. But once it is over, it will not simply sit in history making its meanings self-apparent. The extent to which remembrance gains traction in public consciousness, and the narratives infused with such remembrance, will be complex, contested, and evolving. It is a story beginning even before the pandemic has ended, with numerous memorialisation initiatives already established. 23 March, for example, will mark Britain’s second National Day of Reflection. Marie Curie led the original campaign for the day, and since February 2021 I have worked with them on an AHRC project examining emerging British remembrance of the pandemic. The final 56-page public report from the project has just been published by the University of Exeter. Based on a series of workshops and interviews, it found that a vast array of practices are emerging into a situation of overall flux regarding questions of what we are remembering and why, who should organise such initiatives, and how they should be framed. Being critically aware of such dynamics is of crucial importance for how society publically comes to terms with the pandemic.
We’re both of us working with a large number of researchers who have had an extraordinarily challenging time working through the Covid-19 pandemic and finding new ways of doing their work, with lots of adaptations required of them as they had to find research methods that would allow them to interact with individuals and communities in a Covid-secure, socially-distanced way. In many cases, for the researchers in the Pandemic and Beyond portfolio, this has involved shifting communications online. And that, in turn, has meant that new rules had to be worked out to keep everyone safe.
I remember filling in an ethics form for my own Digital Theatre Transformationproject in which we simply explained that we were going to conduct interviews with audiences via Zoom, and where our main concern had to do with how long we were going to keep the interviews on our Sharepoint in order to be compliant with General Data Protection rules. But we were ill prepared for what then happened when we had the actual Zoom conversations with our audience members, in which we not only got access to their homes in a way that would never have happened before the pandemic, but we also got access to their feelings in a way that was unprecedented. Lots of the people we communicated with for that project were desperately hungry for contact, so that the conversations often felt as though they were not so much research as also a form of therapy. And there were quite a few tears during those conversations, too.
Talking to the other researchers on Pandemic and Beyond projects who had interactions with research ‘subjects’ on Zoom, it’s clear that we were not alone in this: there’s something about the combination of social isolation and the access to people’s homes on Zoom that catalyzed a lot of emotion, and that turned research conversations into something much more personal than our normal research protocols prepare us for. Is that something that chimes with what you’ve heard from your own portfolio? How has Covid-19 impacted on people’s research methods?
That is something that has definitely emerged through the Praxis Project: Covid-19 Strand as well. There has been a significant impact on the mental health and wellbeing of researchers as well as the completion rate and success of the projects as research methodologies have transformed amidst the pandemic. In many cases, projects were more successful as they innovated and found new opportunities for research and new partnerships that emerged.
But this wasn’t just limited to the research projects, practitioners, and practices. With innovation in all aspects of research projects to the opening of new modes of communication, many researchers in the interviews called for an expansion of existing ethical frameworks or even the development of new ones. This expansion or development of new ethical frameworks does not change the existing understandings of ethical research, but rather it is to take into consideration the pandemic context and the severe changes to communication practices that have occurred as a result.
For example, with many of the research projects moving online, data collecting, analysis and dissemination will require an ethics framework that can reflect on the different applications or online mediums of communication, sharing, and transfer. These different mediums, arguably would require different ethics frameworks or as suggested by respondents, a more flexible ethical framework.
Further, this re-invention of ethical parameters was seen as necessary in order to specifically incorporate the changes of our lived realities shaped by conducting research amidst Covid-19. The pandemic changed not only everyday lives but the entirety of the lived realities. The balance between work and life in particular came to the foreground as new boundaries between the private and public sphere were drawn with repeated lockdowns, new rules and regulations, and often, a temporal closure of businesses, offices, universities and schools. Congregating at home to stop the spread of the disease is easy on paper, but the reality often reflects a circus-like act that must take place. Care responsibilities and home schooling while chasing project deadlines were reported to be particularly difficult and made the home/work balance often difficult to maintain.
That being said, there were various coping mechanisms that were put into place by researchers to help them balance their work/life priorities better. ‘Flexibility’ and ‘adaptability’ of working schedules and expectations were crucial for maintaining work on the projects with often work hour reduction and physical changes to their environment being the most cited approaches. These physical changes in the environment spanned from allocating specific ‘work only’ areas in the home to moving house to an area where they may receive additional support from extended family members or friends.