Sociology

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Using arts activities to support staff working with people with dementia in care homes
Chloe Asker
,
Victoria Tischler
, and
Hannah Zeilig

People with dementia were disproportionately impacted by the COVID-19 pandemic. The effects of lockdown measures and restrictions, combined with staffing shortages and working conditions in care homes, were associated with deterioration in the health and wellbeing of residents. Culture Box was a research project that used arts-based approaches to improve wellbeing for people living with dementia in care homes during the time of COVID-19 restrictions. For twelve months, the project sent out boxes containing interactive creative resources and activities for residents and care staff to complete in dyads or groups. This chapter considers the effect of the creative resources and some of the lessons learnt from undertaking an innovative study during a global pandemic. The team focusses on the ways Culture Box facilitated creative connection between resident and staff dyads, and promoted care staff wellbeing, creative agency and methodological innovation. In particular, the authors explore the role of creative practice for care home staff is considered, with recommendations for future research, practice and crises, based on the study’s findings. For more than twenty years, Clod Ensemble’s Performing Medicine programme, directed by Suzy Willson, has brought healthcare professionals and medical students together with world-class artists including dancers, movement artists and musicians, to share invaluable knowledge and experience of working non-verbally and working creatively to improve healthcare provision. This chapter will explore how Performing Medicine (PM) responded to the outbreak of COVID-19 and shares findings from Communicating through Covid – a collaborative research project undertaken during the pandemic. We share the findings of interviews with healthcare professionals and creative workshops with artists, which aimed to understand the challenges faced by these groups as a result of COVID-19 and to discover if there were lessons from creative practice that could address the challenges experienced. Informed by these findings, we outline our programme of creative interventions that were co-developed with a small group of artists. The research undertaken by a combined team of academic, artistic and healthcare professionals shows that arts-based strategies can play an integral role in recovery from the pandemic for those working in healthcare settings. The findings offer viable strategies to address critical issues and bring teams together who have been fragmented by the demands of the response to COVID-19. This chapter throws a spotlight upon the rapid innovations achieved by arts and cultural organisations, from civic institutions to grass-roots enterprises, in response to COVID-19 in one specific city region, Liverpool. It explores the valuable lessons to be learned for practice and policy from the ways in which these novel solutions have stimulated a re-imagining of arts in mental healthcare in the aftermath of the pandemic. Liverpool City Region (LCR) has one of the richest concentrations of culture in the UK and a pioneering history of harnessing arts for mental health care. Yet, even before the current crisis, LCR had some of the poorest mental health outcomes in the country, and the highest concentration of adults seeking mental health services nationally. With the NHS increasingly overstretched, the role of arts and culture in providing stigma-free environments to re-connect the vulnerable and isolated, is more critical than ever. This chapter offers compelling case studies of the extraordinary adaptations to COVID-19 by arts organisations, their beneficiaries and health and social care providers. These dynamically responsive examples of regional arts-in-health innovations speak powerfully to a growing interest in understanding how a local arts-in-health infrastructure might contribute towards improved outcomes for individuals and communities. They also highlight our key finding and its relevance to the current levelling up agenda: the urgent priority of mobilising the transformative power of arts and culture for mental health and wellbeing needs through cooperative partnerships, co-ordinated programmes for social prescribing and targeted support for digital literacy.

in Creative approaches to wellbeing
Vaccine hesitancy, shame and necropolitics during COVID-19
Fred Cooper
,
Luna Dolezal
, and
Arthur Rose

As mass vaccination programmes for COVID-19 gathered pace, they were was accompanied by a nexus of social and political shaming around vaccine hesitancy or refusal. Frequently, shame has been directed at individuals posthumously; for example, in the online sharing of obituaries for notable or vocal anti-vaxxers. While some of the most visible instances of ‘death shaming’ have been decried, they nonetheless remain as extreme iterations – and a logical product – of a more pervasive culture of shame over vaccination, or lack of it. Rather than paying close attention to the contexts (including a trusting and shame-less engagement with public health messaging and communication) which enable different publics to make informed decisions about vaccination, the ‘unvaccinated’ have increasingly taken on the characteristics of a shamed population, culpable for the spread of the virus, for other adverse health outcomes produced by a health system under strain, for the threat of future public health restrictions to everyday life, and for their own suffering and death. In turn, explicit death-shaming has sedimented down into a broader sense of inevitability around deaths that might otherwise be shocking or difficult to ignore. In this chapter, we examine recent discourses on vaccine hesitancy, death and dying through a ‘shame lens’. Future crises, we suggest, will introduce novel relationships between shame and death; critical reflection on the COVID-19 pandemic allows us to anticipate some of the contexts and processes which are likely to condition how and where they land.

in Knowing COVID- 19
Lesley Murray
,
Amanda Holt
, and
Jessica Moriarty

In June 2021 the United Nations produced a report on the rise of violence and abuse towards older people during the COVID-19 pandemic. In particular, older people in care homes across the world faced an increased risk of ‘neglect, isolation and lack of adequate services’. The report also highlighted the increase in gender-based violence (GBV) against older people whose mobility was further restricted due to lockdowns (extensive restrictions on movement and measures to promote social distancing that were imposed to control the spread of COVID-19). While numerous studies from around the world have found that the more intensified living spaces produced by the lockdowns have led to an increase in GBV (Hourglass, 2020; Peterman et al., 2020), the higher incidence of GBV amongst older women has not received adequate attention due to the wider invisibility of GBV stories written or spoken by older women. Importantly for our project, as well as being constrained in terms of their own movements and contact with others, the immobilities of the pandemic also made visible injustices that had already existed. This chapter highlights the absence of older women in stories of GBV during the pandemic. We argue that the ‘invisibilising’ of older women in accounts of GBV not only diminishes our understanding of GBV overall but creates a new injustice. The chapter thus makes a plea for storytelling as a tool for producing knowledge in research seeking to make visible the lives and experiences of this historically overlooked group.

in Knowing COVID- 19
What about the instructions?
Sue Walker
,
Josefina Bravo
, and
Al Edwards

Recent decades have seen steady growth of clinical diagnostic tests that can be used at home, at pharmacies or GP practices. From home pregnancy tests to Fitbits and smart watches, the analytical chemistry and analysis technology has been miniaturised and automated, allowing an increasing range of tests to be taken outside laboratories and hospitals, and brought into the community. Following the roll-out of regular home and workplace testing for COVID-19 during the pandemic, an initial dramatic scale-up of centralised testing was followed by widely publicised mass-testing. To accompany the tests, different kinds of instructions explained to people how to carry out a lateral flow test (LFT). Instructions for these tests range from booklets that accompany NHS and government testing kits, to videos, animations and posters produced by people of all ages from many different backgrounds and with different experiences. During the pandemic, many people learned how to carry out a test – and became proficient and confident about carrying it out accurately. This chapter intervenes in this landscape, through a study of the design and usability of instructions for point-of-use COVID-19 lateral flow rapid tests. The chapter outlines unresolved tensions between the needs of final users and the constraints posed by needing to meet regulations within timeframes. At its heart is an argument that such tests don’t simply need better instructions, but that we need a richer, more nuanced account of what is meant by ‘good instructions’ in the first place.

in Knowing COVID- 19
Open Access (free)
Interrogating togetherness in the context of COVID-19 and online community arts practice
Matthew Reason

This chapter interrogates the meanings and experiences of ‘togetherness’, specifically in the context of the coronavirus (COVID-19) prompted expansion in the online delivery of community arts practice. It frames the simultaneous loss and pursuit of togetherness as a key territory of the pandemic, something that occurred at both community and individual levels, became problematically politicised and yet was also genuinely desired. The utilisation of online community practice to instil a sense of togetherness, wellbeing and resilience has the potential to be a lasting legacy of COVID-19. The objective of this chapter is to think through virtual togetherness, developing a critical framework to help us better evaluate experiences of being together while apart. Specifically, this chapter examines what produces authentic and meaningful experiences of togetherness within online community arts practice. It uses as a key case study the Creative Doodle Book (CDB) project, which between November 2020 and June 2021 delivered online arts workshops with partners across the UK, in contexts including learning disabilities, mental health, care homes and young people. Discussion considers insights from the CDB project in the context of ideas of communitas and selfhood, proposing that authentic experiences of togetherness require both a letting go and strong holding onto personal and collective identity. Its conclusions reflect on how claims for togetherness during COVID-19 are time exclusionary, and it suggests that active consideration of inclusion is essential to future thinking about being together while in online spaces

in Creative approaches to wellbeing
Jamie Webb
and
Kiran Kaur Manku

During COVID-19, the UK government failed to engage publics with the ethical challenges that arose during a period of intensive pandemic decision-making. Government-led public engagement focused on surveys that rendered publics passive and tokenistic consultative on narrow policy decisions. There was a void not only in engaging publics with collaboratively grappling with the numerous ethically laden decisions the government had to make in response to the pandemic, but in also recognising the importance of values, particularly public values, in public policy at all. Through their work on the UK Pandemic Ethics Accelerator, the authors conducted a public dialogue and hosted a policy workshop in the House of Commons to provide a platform for public values to be integrated into public policy. Through this work, we experienced the challenges of institutionally embedding more substantive public engagement in public policy, and reflect on them in this chapter. We end with some recommendations for bridging the gap between policymakers and publics, stressing the need to institutionalise mechanisms by which citizens can deliberate on ethically value-laden policy decisions, through which public policy can be made accountable to public values.

in Governance, democracy and ethics in crisis-decision-making
Uses of the landscape in the far-right cultural milieu and the ethics of researching them
Andrew Fergus Wilson

This chapter explores far-right usage of ‘the folkloresque’ in the appropriation and vernacular restaging of extant and reimagined religious iconography and concepts. The focus of the chapter is the use of landscape in the communication materials of a number of far-right groups as well as in their actions. This chapter will unpack and examine the multiple strands of meaning that were present within this action and situate these strands within racial nationalist ideology and its associated cultural milieu. The use of the land in the racial nationalist milieu is commonplace. For instance, Dan Stone outlined, and Roger Cutting expanded upon, ‘indigenous organic fascism’ in the 1930s; Bernard Forchtner has written about homologous sacralisation of land and race in British National Party materials; and Amy Hale analysed the resonance between John Michell’s Earth Mysteries and right-wing Paganism. Thus, this chapter situates current far right ‘land-making’ activity within this milieu. In doing so the chapter demonstrates the importance of recognising the ongoing and open-ended work of engaging with an enchanted landscape that makes available the sacred landscape as a heterodox and multi-faith resource that offers multiple places of meaning within its open spaces.

in The ethics of researching the far right
Working in service to racial justice
Remi Joseph-Salisbury
,
Laura Connelly
, and
Aurelien Mondon

Although there has been relatively little written to date about the practice of far right research, there is growing recognition that the complex ethical and political challenges researchers face are important subject matter in their own right. This chapter therefore brings together scholarship on anti-racist scholar-activism and the far right and its mainstreaming to explore how the principle of working in service can guide the praxes of those researching race, racism, and anti-racism. Centring questions of social usefulness and accountability, the chapter reflects on how an in service orientation urges us to push back against approaches within far right studies that risk amplifying and legitimising the far right. Instead, working in service requires us to place ourselves firmly on the side of communities of resistance and racial justice more broadly.

in The ethics of researching the far right
Ethical challenges in sharing, researching, and teaching
Daniel Jones

Does extreme material present a challenge to archive ethics and practice? Based on the decade of work of the Searchlight Archive at the University of Northampton, this chapter explores the question of how those working around archives of extremism can ethically engage with the material and make use of it to further education in this key area. As well as considerations of practical measures in managing and welcoming users into the archive space, this chapter considers the obligations of the archivist to care for the wellbeing and safety of their staff and researchers. It also argues that the archive should not be a passive repository, but instead that archives covering extremism can help engage students and the wider public with important parts of social and political history. These archives have an important role to play in the decolonisation of teaching by offering sources from extreme groups and community groups that oppose them. Ultimately, it asks whether the risks of this material can be balanced and mitigated to unlock the potential that exists within archives of extremism, and how researchers and practitioners can approach such content to achieve this.

in The ethics of researching the far right
Kayla Preston

There is a much-needed interest in care in the research community. This topic is even more necessary when researching contentious topics. The far right is one of these topics. Because far-right participants in research may express racist, xenophobic, Islamophobic, homophobic, and transphobic views, researchers who engage with these individuals or groups, especially those who may be targeted by the far right, face increased risk to their mental and physical health. In this chapter, I address past research which has discussed how to protect researcher well-being in the field such as detachment from research, feelings of research discomfort and ambivalence, as well as self-care. I ask how researchers separate themselves when looking at explicit or troubling content, and how best we can support individuals who may feel isolated by the research enterprise. My chapter concludes by addressing the importance of community building and community support during research on the far right. Community, mentorship, and peer support are viable ways to assist researchers both in and out of the field to combat negative experiences that may arise during emotional labour, trauma, and fear during the research process. While this chapter focuses on how this may help researchers who examine the far right, the implications of community care are far-reaching across research disciplines.

in The ethics of researching the far right