Researching in the Age of COVID-19: Volume III: Creativity and Ethics 9781447360438

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RAPID RESPONSE

Researching in the Age of COVID-​19 Volume 3: Creativity and Ethics

Edited by Helen Kara and Su-​ming Khoo

First published in Great Britain in 2020 by Policy Press, an imprint of Bristol University Press University of Bristol 1-​9 Old Park Hill Bristol BS2 8BB UK t: +44 (0)117 954 5940 e: bup-​[email protected] Details of international sales and distribution partners are available at policy.bristoluniversitypress.co.uk © Editorial selection and matter and conclusion @ Helen Kara and Su-​ming Khoo. Introduction © Su-​ming Khoo and Helen Kara. Individual chapters © their respective authors, 2020. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library ISBN 978-​1-​4473-​6042-​1  ePub ISBN 978-​1-​4473-​6043-​8  ePdf The right of Helen Kara and Su-​ming Khoo to be identified as editors of this work has been asserted by them in accordance with the Copyright, Designs and Patents Act 1998 All rights reserved:  no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without the prior permission of Bristol University Press. Every reasonable effort has been made to obtain permission to reproduce copyrighted material. If, however, anyone knows of an oversight, please contact the publisher. The statements and opinions contained within this publication are solely those of the editors and contributors and not of the University of Bristol or Bristol University Press. The University of Bristol and Bristol University Press disclaim responsibility for any injury to persons or property resulting from any material published in this publication. Bristol University Press and Policy Press work to counter discrimination on grounds of gender, race, disability, age and sexuality.

Contents



List of figures  v Notes on contributors  vii Introduction  1 Su-​ming Khoo and Helen Kara

Part I:  Creative approaches   1. The creative translation of design methods into social research contexts  9 Ricardo Sosa and Lisa Grocott 2. ‘Crafting during Coronavirus’: Creative diary approaches for participant-​centred research  19 Naomi Clarke and Debbie Watson 3. Decolonizing writing:  Situating insider–​outsider researchers in writing about COVID-​19  29 Duduzile S. Ndlovu 4. Pandemic tales: Using story completion to explore sense-​making around COVID-​19 lockdown restrictions  39 Virginia Braun, Victoria Clarke and Naomi Moller

Part II:  Exploring ethics   5. Conceptualizing research ethics in response to COVID-​19: Moral and economic contradictions  51 Vanessa Malila 6. COVID-​19 research crisis management for a human research ethics research project in Fiji and Tonga  61 Etivina Lovo

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iv  7. Forced displacement of migrants from countries of origin and their transit migration through Mexico to the US  70 Nancy Rios-​Contreras 8. Transforming culturally relevant research amid a COVID-​19 pandemic   80 Eboni Anderson, Daryl Traylor, Carolee Dodge Francis, Megan Murphy-​Belcaster, Melva Thompson-​Robinson, Johanna E. Andrews, Tristesse Burton, Kristina Ricker and Sutton King

Part III:  Approaching creativity and ethics through collaboration and co-​creation   9. Using photovoice to explore students’ study practices  93 Emma Waight 10. Scicurious as method: Learning from GLAM young people living in a pandemic about cultivating digital co-​research-​creation spaces that ignite curiosity and creativity  102 Kathryn Coleman, Sarah Healy, Niels Wouters, Jenny Martin, Lea Campbell, Sam Peck, Amanda Belton and Rose Hiscock 11. Doing design research with youth at/​from the margins in pandemic times: Challenges, inequalities and possibilities  112 Rafael Szafir Goldstein, Rosana Aparecida Vasques and Maria Cecilia Loschiavo dos Santos 12. Conclusion  120 Helen Kara and Su-​ming Khoo

List of figures

Figure 2.1: French knots  22 Figure 9.1: Example of photovoice imagery  97 Figure 11.1: A view from COOPAMARE with some waste pickers  117

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Notes on contributors

Eboni Anderson, African American researcher, is Professor at A.T. Still University, US. Johanna E. Andrews, African American researcher, is based at the Center for Health Disparities Research, University of Nevada, Las Vegas, US. Virginia Braun is Professor of Psychology at University of Auckland, New Zealand. She is a critical health and feminist psychologist, who researches around gendered bodies, sex and health/​wellbeing, and writes around qualitative research including thematic analysis, qualitative surveys and story completion. Tristesse Burton, PhD, African American researcher, at University of Nevada, Las Vegas, US. Naomi Clarke is an ESRC-​ funded PhD student at the University of Bristol, UK. She has utilized creative, visual and narrative approaches both within her academic work and through her own freelance work as a designer and crafter. Victoria Clarke is a psychologist researching gender, sexuality, appearance, embodiment, family and relationships, based at the University of the West of England, UK. She writes around qualitative research including thematic analysis, qualitative surveys and story completion. Carolee Dodge Francis, WI Oneida Tribe, is Professor, University of Wisconsin, Madison (UW-​Madison), US. vii

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Lisa Grocott is a design researcher who thrives on collaborating with learning scientists and creative methodologists. After a decade at Parsons in New York, she is currently Director of WonderLab and leading a research program around the Future of Work and Learning in the transdisciplinary Emerging Technologies Lab at Monash University, Australia. Helen Kara FAcSS has been an independent researcher since 1999 and an independent scholar since 2011. She is the author of Creative Research Methods: A Practical Guide (Policy Press, 2nd edn 2020) and Research Ethics In The Real World: Euro-​ Western and Indigenous Perspectives (Policy Press, 2018). Su-​ming Khoo is Lecturer in Political Science and Sociology, and leads the Environment, Development and Sustainability (Whitaker Institute) and Socio-​ Economic Impact (Ryan Institute) Research Clusters at the National University of Ireland, Galway. Her research is on human rights, human development, public goods, development alternatives, decoloniality, global activism and higher education. Sutton King, MPH, Menominee/​Oneida Tribes, is Executive Director of the Urban Indigenous Collective, US. Maria Cecilia Loschiavo dos Santos is a philosopher and full professor of design at the School of Architecture and Urbanism, University of São Paulo, Brazil. She was a visiting scholar in postdoctoral programs at five other universities. At the SEEYouth Project, she is the Principal Investigator in Brazil. Etivina Lovo is a PhD candidate at the James Cook University, Australia. Her background is in research bioethics, medical ethics and public health. She works as a Research Fellow at the College of Medicine, Fiji National University, Fiji Islands. Her research interest is in engaging indigenous and cultural ethical values and principles in the governance of research involving Pacific Islanders.

Notes on contributors

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Vanessa Malila is Research & Development Officer at the Humanitarian Academy for Development. She holds a PhD in Media and Communication Studies from the University of Leeds, UK. She began her career as an academic specializing in media and citizenship in the South African context. In 2016, she moved to the civil society sector, working as a researcher for a South African NGO. Her areas of specialization include the roles of journalism in promoting good governance, citizenship, civil society and citizens in development, and research ethics. Naomi Moller is a counselling psychologist and Senior Lecturer at the Open University, UK, whose research spans topics related to counselling and psychotherapy, and relationships and infidelity. She also writes on qualitative methods for counselling and psychotherapy research. Megan Murphy-​Belcaster, Oglala Lakota Tribe, is a medical student at the School of Medicine, University of Wisconsin-​Madison,  US. Duduzile S. Ndlovu is a postdoctoral fellow at the University of the Witwatersrand, South Africa, and holds a Newton Advanced Fellowship attached to the University of Edinburgh, Centre for African Studies (CAS) (2018–​2020) exploring arts-​based research methods as a form of decolonizing knowledge production, interrogating intersectionality through narrative work and analysing the gendered politics of memory. Kristina Ricker is a PhD student at University of Nevada, Las Vegas, US. Nancy Rios-​Contreras is a PhD candidate in criminology at the University of Delaware, US. Her research explores international transit migration to the United States using legal violence and disaster concepts of social vulnerability and resiliency. She also investigates social movement organizing, race-​ based cultural programs and perceived police-​ community relations. Nancy is a Bill Anderson Fund Fellow

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and an affiliate of the Disaster Research Center at University of Delaware. SciCurious Research Project Team:  Kathryn Coleman, Sarah Healy, Niels Wouters, Jenny Martin, Lea Campbell, Sam Peck, Amanda Belton and Rose Hiscock are an interdisciplinary team behind an ongoing University of Melbourne –​Science Gallery Melbourne collaboration. They describe themselves as ‘the custodians of the SciCurious Research Project which is an intergenerational research collective. Across our collective, we have collaborators who identify as artists, designers, engineers, scientists, coders, biologists, researchers and inter/​ trans/​ pre-​ disciplinarians who aren’t defined by disciplinary labels. What we are, is scicurious. This conceptual collaboratory offers us a space to explore scicurious, scicurious as method and scicurious as becoming.’ Ricardo Sosa is Associate Professor at AUT University in Aotearoa New Zealand and holds adjunct positions at Monash University in Australia and Nanyang University of Technology in Singapore. He teaches and conducts research in design and creative technologies with an emphasis on creativity for social justice. Rafael Szafir Goldstein is a junior researcher at the SEEYouth Project. He is a design student at the School of Architecture and Urbanism, University of São Paulo, Brazil. Melva Thompson-​Robinson, African American researcher and Professor in Social and Behavioural Health, University of Nevada, Las Vegas, US. Daryl Traylor is an African American Nursing PhD candidate at University of Missouri, US. Rosana Aparecida Vasques is a lecturer at FAU-​USP for the undergraduate course and collaborates in the postgraduate program in design. She is also a Research Fellow at both the SEEYouth Project and the InovaUSP.

Notes on contributors

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Debbie Watson is Professor of Child and Family Welfare in the School for Policy Studies, University of Bristol, UK. She is an interdisciplinary researcher who has regularly used and taught visual, arts-​based, narrative and performance methods. Recent projects have involved jewellery making and fictional storying with mothers living on low-​incomes and co-​ design of a phygital memory bag with children who are care experienced. Emma Waight is an Assistant Professor in Design Management at Coventry University, UK. With a PhD in human geography, her research has focused on everyday consumption, materialities and, most recently, posthuman theory. She has a parallel interest in doctoral student support, with the chapter produced in this book referring to her most recent project on doctoral writing as a posthuman practice.

Introduction Su-​ming Khoo and Helen Kara

Since the global COVID-​19 pandemic began in the early months of 2020, researchers have had to respond to new limitations, reassess and rethink their ongoing and near-​future research. Some research is about emergencies like the current COVID-​19 health emergency, some research is not specifically about emergencies or disasters but takes place in a context already affected by emergency or disaster. Some research has nothing to do with emergencies or disasters at the outset but must deal with one (or more) that unfolds as the research proceeds. As the world continues to deal with the reality of COVID-​19 in the longer term, researchers are reminded that emergency and disaster situations are ongoing in many contexts or may occur at any time. The challenges of researching in an emergency-​affected context also present a crucial opportunity to critically reflect on the fundamental purposes, assumptions and issues driving that research, as well as more practical issues around the choice of methods and manner of implementation. The eruption of a global health emergency like COVID-​19 offers important opportunities to reassess the role of creativity and ethics in research. It surfaces broader and deeper ethical questions beyond adherence to the necessary but limited formal procedures of standard institutional research ethics approval. Researchers in every part of the globe have responded to the new challenges of researching amidst the COVID-​19 pandemic in diverse, thoughtful and creative ways –​from adapting their data collection methods to rethinking researcher–​researched relationships and fostering researcher and community resilience, while accommodating different needs for care. 1

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Creativity and ethics are linked in research. New problems stimulate creativity, because they disrupt given assumptions and present demands for original and workable ways to solve problems. Creativity is often assumed to be a good in itself, but this isn’t true. Creativity itself may be a force for maleficence as well as beneficence, hence Sternberg argues that creativity should be tempered by wisdom (Sternberg and Lebuda, 2019). The context of crisis or emergency disrupts the ‘normal’, exposes the normative assumptions that underlie research methodology, research questions, research design and research practices. Ethical problems are central in all research –​all researchers are required to adhere to certain ethical codes and receive ethics training, though this, of course, is no guarantee of ethical conduct (Mumford et al, 2010). This book is the third volume in a series of three Rapid Responses. Together, we hope that these books help academic, applied and practitioner researchers worldwide to adapt to the new challenges COVID-​19 brings. The first volume focused on researchers’ rapid responses and reassessments, and the second volume connects researcher, participant and community care and resilience with common concerns with vulnerability and wellbeing. This third volume explores dimensions of creativity and ethics, bringing to the fore the question of how creativity and ethics are connected. Creativity brings to the fore the possibility of questioning the given, including assumptions and frames of thought, their normative bases and expected political and social responses that we do not usually bother to scrutinize (Roitman, 2013), opening up our fields of research anew. In thinking creativity into research, we should be reminded that moral creativity is itself a key domain, turning research towards the exploration and resolution of moral dilemmas. From a different starting point, creative activities such as writing, storytelling, photography and so on are intrinsically generative and we might think of doing art and craft as ethical undertakings in their own right that deserve to be fostered in, and through, research work (Runco and Nemiro, 2003). The first section of this volume explores explicitly creative approaches to researching in the age of COVID-​19. In Chapter

Introduction

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1, Ricardo Sosa and Lisa Grocott discuss the use of design methods in practice-​informed academic research. They explore the space between design and research, seeing creativity as particularly important for researchers involved in responding to the ‘wicked’ and ‘messy’ problems connecting health, economic, political and societal issues amidst unprecedented disruptions. In Chapter 2, Naomi Clarke and Debbie Watson explore the use of crafting and making during the COVID-​19 lockdowns among an international group of 315 participants, recruited through social media. Their diaries, photos and craft making were used for elicitation within a narrative inquiry design, helping the researchers understand how people’s lives are going during a difficult time. In Chapter 3, Duduzile S. Ndlovu uses writing in poetry and prose to reflect on how her own migrant identity as ‘Zimbabwean in South Africa’ and her academic identity as a researcher come under strain under the conditions brought by COVID-​19. Using the framing of migration research in the global South, she interrogates her position as an insider–​ outsider researcher and the clashing assumptions that come with different identities and assumptions. In Chapter 4, Virginia Braun, Victoria Clarke and Naomi Moller explore how people make sense around COVID-​19 rule breaking in New Zealand and the UK using the story-​completion method. Story completion is a powerful method for researching a controversial topic in a difficult situation, because instead of asking for views directly, it uses expressive writing which may also have the added advantage of therapeutic benefits. The second section of this volume further explores concerns around research ethics and ethics generally in widely varying geographical, cultural and socioeconomic settings. The chapters in this section raise multiple questions about how research is conceptualized and conducted. Chapter 5 by Vanessa Malila reviews the research literature to get to grips with the tensions and contradictions between ‘morality’ and ‘economics’ in current research ethics and policy discourses responding to COVID-​19 in the UK. She notes a blurring line between deontological and utilitarian ethics and acknowledges the difficulties of trying to think about the ethics of an unprecedented situation from the middle of

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that situation. Chapter 6 by Etivina Lovo and four colleagues discusses additional challenges that COVID-​ 19 pandemic restrictions brought to the conduct of research about human research ethics in the Fijian Islands and Kingdom of Tonga. They offer rich examples to illustrate that the necessity of shifting to online research does not erase the need to ensure that research is conducted in a culturally appropriate and linguistically competent way. This chapter offers a window into sophisticated ethical concepts and language influencing the conduct of research and that have much to offer to the field of human research ethics from Tongan and Fijian indigenous culture and thought. In Chapter 7, Nancy Rios-​ Contreras discusses her research on forced displacement on the Mexico–​US border. Forced migration is a nexus of crises, while migration control can be said to be a social disaster with crisis manifestations. She critically questions the ethics of conducting fieldwork during this complex nexus of concurrent social disasters, including the social injustices raised by the Black Lives Matter protests, to which the pandemic adds further detrimental impact. In Chapter 8, Eboni Anderson and a team of eight colleagues further explore the underlying issues for Black, Indigenous and people of colour (BIPoC) in the US. Their focus on health disparities research identifies who suffers most from inequitable access to care, treatment and resources. Health disparities research offers an in-​depth understanding of the demographic framework (such as race, ethnicity, gender, age, socioeconomic status, marital status and ability status) necessary for addressing COVID-​19 with broader ethics in mind. The final three chapters, comprising the third and closing section of this volume, address different ways of approaching creativity and ethics through collaboration and co-​creation. In Chapter 9, Emma Waight discusses the use of the photovoice method to understand doctoral students’ experiences of working from home. Using this method to document and share students’ writing practices and experiences, Waight presents photovoice as a participatory method with the co-​creation of knowledge at its heart. Chapter 10 by Kathryn Coleman and a team of seven others from the University of Melbourne –​ Science Gallery Melbourne collaboration offer a view from

Introduction

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SciCurious Research Project which is an intergenerational research collective. They see the COVID-​19 pandemic as a ‘comma’, a creative breathing space and valuable opportunity to reconsider how they might do speculative inquiry and co-​ research-​creation. This chapter highlights the benefits that co-​ research creative spaces can offer to young people, involving them in doing the kind of research they want to do, where they want to do it. The closing chapter, Chapter 11 by Rafael Szafir Goldstein, Rosana Aparecida Vasques and Maria Cecilia Loschiavo dos Santos offers a perspective from doing arts-​ based design research with youth at, and from, the margins, using the example of COOPAMARE, a highly successful waste-​pickers cooperative working with people living on the streets in São Paulo, Brazil. Given the constraints imposed on research by the pandemic situation, the researchers used a video art exhibition and storytelling to ‘mirror’ with Finnish research counterparts how COOPAMARE works to overcome the challenges of poverty and living on the streets. Taken together, these chapters share creative practices, research experiences and deeper reflections from researchers around the world at an especially challenging time. Researchers in diverse fields, at different stages of their research careers and from all parts of the globe are responding to a global pandemic and reassessing their research approaches and methods with creativity, critical reflection and ethical commitment. We hope that you will find important questions, innovative and useful ideas and inspiration in these chapters that will ultimately benefit your own research projects.

References Mumford, M.D., Waples, E.P., Antes, A.L., Brown, R.P., Connelly, S., Murphy, S.T., and Devenport, L.D. (2010) ‘Creativity and ethics:  The relationship of creative and ethical problem-​ solving’, Creativity Research Journal, 22(1), 74–​89. Roitman, J. (2013) Anti-​crisis. Durham, NC: Duke University Press. Runco, M. A., and Nemiro, J. (2003) ‘Creativity in the moral domain: Integration and implications’, Creativity Research Journal, 15, 91–​105. Sternberg, R., and Lebuda, I. (2019) ‘Creativity tempered by wisdom: Interview with Robert J. Sternberg’, Creativity, 6(2): 274–​280

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I

Part 

Creative approaches

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The creative translation

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1 The creative translation of design methods into social research contexts Ricardo Sosa and Lisa Grocott The ongoing COVID-​19 pandemic invites imaginative action to adapt to ways of living that only a few months ago were unimaginable. Creativity can lead researchers toward ingenious workarounds when major disruptions impede familiar practices. Creativity can also play a substantial role for researchers who seek to respond to the wickedness and messiness revealed as the novel coronavirus makes visible the close connections between health, economic, political and societal issues. Researchers may respond in various ways, from reformulating long-​established research questions and approaches to exploring new transdisciplinary collaborations. The path to a ‘new research normal’ starts with methodological innovation, and this chapter suggests how methods normally used in creative design practice can inform this journey. The chapter unfolds the methodological issues and tensions that characterize the usage of design methods in the contexts of practice-​ informed academic research. The authors locate themselves in the intersection between design and research, thus adopting a stance of ‘designerly researchers and researcherly designers’ (Yee, 2017). Their work in this crossroads draws from their experiences as designers to contribute to the innovative transformation of research in a world of imminent disruptions. In doing this, they also draw from their experiences in academia to consolidate inquiry practices in design research. The work presented here is motivated by the insight that ‘knowledge, experience, and skills from almost any arena can make a useful contribution to research’ (Kara, 2015), and specifically asks

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what design contributes to research collaborations (Grocott and Sosa, 2018).

Introduction

Every research method was first imagined and trialled by those who creatively devised new ways of studying the problems and topics of their interest. New methods and techniques have continuously emerged as part of the knowledge, experience and intuitions cultivated in research activity. At some stage, the new ideas and ways of working are developed, evolved and embraced by a community that forms around accepted beliefs, values and practices, including methods of inquiry. Across fields, there is a continuous flux of creativity in research, from small tweaks to more substantial departures (Kara, 2015). Creativity is ever present in research activity, from formulating a novel research question to framing original ways of approaching a topic of inquiry. On the other hand, creativity also finds opposition in research at the point where disciplinary identities become strongly associated with particular interpretations of methodological rigour within a particular discipline. A significant tension is thus visible between the evolution of methods against demands for integrity, accountability and credibility. Our complementary experiences in the field of design research lead us to reflect upon the nature of methods between academic research and design practice. More specifically, we have noticed how design methods help to creatively respond to challenges caused by the COVID-​19 pandemic to deepen participatory encounters, shift perspectives to see situations anew and navigate irreconcilable differences. In what follows we introduce design practices we are evolving as researchers, note the implications of translating design methods into research methods and identify the productive contribution of these design-​ informed research methods to applied transdisciplinary inquiry. In professional contexts, designers apply tools, techniques and methods that have been adopted and customized from multiple sources. The term ‘design method’ has had multiple

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meanings over the years. Here, we refer specifically to the tools and techniques that designers use to inform, guide and support design activity. Collections of design methods (Martin and Hanington, 2012; Kumar, 2013) show considerable variation in what is included, and what implicit criteria identify a design method. Designers refer to methods in general, such as sketching or prototyping, or in narrower categories, such as study sketches or annotated sketches and appearance models or functional models (Pei et al, 2011). Notably, a number of design methods have been appropriated from other fields and many repurposed to support design activity. Examples of design methods with origins from across academic and professional contexts include ‘design charrettes’, ‘morphology analysis’, ‘photo‐elicitation’ and ‘participant observation’ (Martin and Hanington, 2012). Other methods used in design have been radically transformed or created afresh, such as the widely-​ used ‘Wizard of Oz’ interaction design method (Guindon, 1988). We resist casting a rigid definition of design methods given that new and old, foreign and endemic individuals and design communities have their own preferred practices, habits and terminologies (Pei et al, 2011). Within the academy, design methods are used within methodologies of practice (based, led, oriented) research (Vaughan, 2017), often with the prevailing claim that design methods ‘used by the practitioner can stand as research methods in their own right’ (Haseman, 2007, our italics). The use of a practice method literally as a research method is well established in artistic disciplines, but this tradition often goes unexamined in design research. However, the focus in this chapter on the potential to translate design methods into social research locates the authors’ interest in methods ‘led by research’ over those ‘led by design’ (Sanders and Stappers, 2012). We critically examine here the synergies and possibilities creative design methods bring to transdisciplinary collaborations. The ways in which these design methods are used in social research deserves particular examination if these are to contribute to innovative research activity in times of crises. In addition, there are opportunities to consolidate a methodology for design research that is appropriate and distinct from quantitative, qualitative and artistic research.

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Methods in design and research contexts

To unfold the issues raised by the re-​ contextualization of design methods to research practices, we begin by clarifying some ontological and epistemological differences that shape not so much the methods themselves, but how they might meaningfully be deployed for research. Succinctly, design practice aims to create paths that lead to better futures, whilst research seeks to create paths that lead to better understandings. To be clear, our focus here is to ask: ‘What might be the creative possibilities afforded by adapting design methods for research inquiry?’ To address this question, we examine design-​based research methods that highlight the contribution of these creative methods in transdisciplinary collaborations: • Visual thinking as a sense-​making method   Design draws on emergent and representational visual tools like sketching, storyboarding or diagramming as a mainstay of practice. A design-​based research method reframes the affordances of visualizing into a ‘critical thinking meets sense-​making’ tool for negotiating the multi-​dimensional nature of transdisciplinary research. Departing from the design of visual artefacts created to communicate, the potential of visualizing as a research method is in manipulating the interplay between representing the known and inviting the not-​yet-​known to emerge. In this way the visualizing process can simultaneously map and question the ephemeral, invisible and tacit social dimensions at play. The integrity of the method lies not in a final artefact but in the affordances of the critical back-​talk created by the process to make sense of the otherwise incommensurable component parts. In this way, visual thinking can help surface a tacit belief, map pathways that were previously invisible to a community or allow consensus to iteratively emerge in a complex situation. In our work we use the visual research method of ‘Figuring’ as a particular way of drawing that integrates the reflective ability to provisionally fix certain elements so the designer can navigate

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complex moving pieces, with the speculative capacity to put forth possible ideas for a situation the designer is still making-​sense-​of (Grocott, 2012). The sense of uncertainty pervasive in COVID-​19 times lends itself to strategies that simultaneously hold space for ambiguity while tentatively capturing possible ways forward for discussion via visual representations. • Speculative thinking as augmented interviewing  The futures-​ orientation of design invites speculative, counterfactual or design fiction to be deployed as research methods. Fictitious artefacts, future scenarios and alternative worlds provide a rich entry point for discursive inquiry that can heighten meaningful participation and engagement. In such contexts, dialogic artefacts and activities can prompt co-​creation of more democratic, creative and/​or inclusive futures. In our work, we apply speculative methods in participatory research projects to open up space for the collective imaginary to surface. In related projects, a humanoid robot is programmed to coordinate group activities where the android enacts implausible characters (a time-​traveller that warns about shocking future events; a robot politician running for office). In these projects we adapt ‘crit sessions’ as a dialogical alternative to focus groups and group interviews. Such scenarios lead to lively conversations where hypothetical questions spark deep reflections and meaningful exchanges between participants in ways that have exceeded expectations by experienced (human) facilitators. • Analogical thinking as a co-​creating prompt  Drawn from literary rhetoric, the creative value of metaphorical reasoning is grounded in the generative potential of considering alternative perspectives. As a human-​centred design method, the focus is on observing behaviours in a parallel context –​for example, if you want to understand brand loyalty, study mega-​ churches. In co-​design workshops, analogical thinking is used to go beyond surfacing participants’ lived experiences. In such settings, analogies work as convivial frames to prompt participants to reveal tensions, surface

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emotions and generate possible futures. In our work, we use experiential metaphors as a research method for drawing out tacit beliefs and empathic understanding. A COVID-​19 wellbeing project asks people to consider how to gift compassionate gestures in a time of people grieving in physical isolation (instead of a 20-​second therapeutic hug calming anxiety levels with a synchronized heartbeat, a 20-​second video of the sunrise used nature’s analogous capacity to achieve similar results). As a reframing move, the method offers more than a way to learn from observed behaviour but acts as a self-​distancing method for obliquely discussing difficult topics. Noticing the applicability of methods across contexts leads the authors to discuss key considerations when design-​based methods are adapted for transdisciplinary research, particularly about social phenomena. Design methods are used in professional contexts in response to a brief (or problems), and as a means to generate original proposals for change (or solutions). In contrast, design-​based research methods respond to a research question or statement. A design method in a research context serves to generate or assess new knowledge or ways of understanding reality, defined by the adopted ontological position. The key difference between these ways of using a given method is in the intent, the shift is from solution-​seeking to inquiry-​seeking. The appropriateness of design-​ based research methods weighs the discursive and performative affordances of the research artefact (the figuring diagram, speculative robot or video hug) to contribute research insights over the formal, functional or aesthetic resolution of the material form. This shift in emphasis from resolved final design (think innovative new product) to designing as a mode of inquiry (the research methods shared here) is significant. Our argument is not that designed artefacts cannot be knowledge productive, but that in adapting methods from design practice into research, careful considerations of purpose and procedure become necessary. The arguments for persuasiveness in design

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practice rely heavily or entirely on the resulting artefact, with little concern for the veracity of the methods that led to that solution. In contrast, the emphasis of the researcher is on making decisions in an informed manner, and assessment is centred on the integrity of the results. Methodological decisions and the appropriateness of the methods chosen are essential to the positioning and evaluation of research. The arguments for persuasiveness in research rely as much on the methods as on the results. To this end translating design-​based methods for a research context requires an increased systematicity and commitment in applying them. The application of design methods in practice can be attributed to mastery, personal style and responsiveness to contextual adaptability. Their use in research calls for a higher level of transparency and justification that shifts the balance to investing time in evolving a method that can be used across projects or by others. This consistency is not to serve some notion of replication, or even compare results across contexts, but an acknowledgement that the development of a design-​ based research method requires substantive rethinking, prototyping and evaluation of the method as a process of inquiry. For example, to develop a method for unstructured interviews the researcher needs to pay careful consideration to how design might inform the priming, the questions, the coding and the analysis. The socio-​ cultural and ethical implications in designing such research methods call for deeper interrogation and consultation.

Creative methods for transdisciplinary collaboration

The key argument of this chapter is that design methods, through careful repurposing and intentional application, can be imaginatively adapted into research methods and fruitfully contribute to methodological innovation. We close with four notes on the use of design methods in transdisciplinary research collaborations: • Rather than a literal transfer as implied by the claim that design methods ‘can stand as research methods in

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their own right’ (Haseman, 2007, our italics), a creative process of translation seems crucial to deconstruct and re-​ assemble a method for a different purpose. This demands creative contributions from designerly researchers to identify the tensions and figure out appropriate ways to surface the research potential of particular design methods. • A recurring effect in the adaptation of design methods for research is the prioritization of human, ecological and ethical concerns as constitutive of all research activity. Notably, design methods lead to a commitment towards participatory and n-​disciplinary (multi/​inter/​ cross/​trans) approaches preoccupied not only with what is, but with what could/​should be, including the futures made possible by the effects of the research activity at hand. • Collaboration between researchers and designers with expertise in a range of methods is recommended to better navigate the wicked systemic problems and messy social situations such as those made visible in crises like the COVID-​ 19 pandemic. However, such expertise may be insufficient until collaborators are able to bring advanced reflective capacities in and on their design and research practice (Vaughan, 2017). • The attentive and deliberate effort needed to develop design-​ based research methods will be enhanced by more researchers working across disciplinary boundaries. Social researchers working across qualitative, action-​ oriented and post-​ qualitative methodologies can bring designing (visualising, speculating, co-​creating) to innovatively adapt established research methods. Similarly, design researchers developing design-​ based research methods can learn from ethnographic and phenomenological methods, participatory and action research practices and grounded theory protocols to more deeply understand how design might contribute to methodological innovation. The re-​ imagining of design methods as research methods allows the contribution of design to be about more than the

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aesthetics of research communication (such as dissemination videos) or the innovation of applied artefacts (such as ergonomic devices). Design-​ based research methods work with the design activity of framing (Dorst, 2015) and (re) framing to interrogate the way a research situation is named and acted upon, the way a research question evolves and how underlying assumptions can be made visible and possible futures imagined. This integrative capacity of design to fix and propose, to work across people and systems, between solutions and speculation, within the known and the unknown, can contribute across all phases of a research programme. Our experience defined by the sudden and unprecedented effects of the COVID-​19 pandemic has made evident the merits and challenges that come from deploying design-​based methods in transdisciplinary research contexts. The value of design to quickly make tangible, to creatively see another way forward, to productively make in the face of uncertainty, underscores the contribution of a material, iterative, action-​ oriented practice in a time of multiple moving parts and potential paralysis. However, equally the impulse to act, the reliance on learning from prototyping in the world and the invitation to imagine anew, were not always appropriate responses in a context open to disastrous unintended consequences from ill-​ considered moves. It is clear that research responses to the global pandemic call for well-​ considered transdisciplinary collaborations, for interventions that rely on equal parts creative and critical thinking to ensure we act ethically, responsibly and with care. We humbly recognize that design-​based research methods are only a small part of what might support this collective effort, and equally argue for design researchers learning from the depth of expertise of disciplines working in other social and applied spaces. The focus here on methods does not prevent critical examination of the epistemological and ontological dispositions we bring to our research practice. We have learned that methods and dispositions are mutually constitutive. The space an ethnographer creates to attune to a place of fieldwork is as critical as the sensory methods they use whilst on site, just as a design researcher’s learned ability to sense potential in a workshop idea is intrinsically tied to the

success of the storymaking activity. Whether we observe how the world is or imagine how the world might be, the lived experiences and the cultural and disciplinary orientations we bring to our research inherently inform how we adopt, adapt and apply these methods (Grocott and Sosa, 2018). This is why our commitment to humility, reciprocity and generosity forms the core methodological principle we bring to innovative transdisciplinary collaborations.

References Dorst, K. (2015) ‘Frame creation and design in the expanded field’, She Ji: The Journal of Design, Economics, and Innovation, 1(1): 22–​33. Grocott, L. (2012) ‘The discursive practice of figuring diagrams’, TRACEY Journal: Drawing Knowledge, 4(1): 1–​15. Grocott, L. and Sosa, R. (2018) ‘The contribution of design in interdisciplinary collaborations:  A framework for amplifying project-​ grounded research’, in Oliver, J. (ed) Associations: Creative Practice and Research. Melbourne: Melbourne University Press. Guindon, R. (1988) ‘How to interface to advisory systems? Users request help with a very simple language’, in O’Hare, J. J. (ed) SIGCHI conference on Human Factors in Computing Systems, Washington D.C.: ACM, 191–​196. Haseman, B. (2007) ‘Rupture and recognition: Identifying the performative research paradigm’, in Barrett, E. and Bolt, B. (eds) Practice as research: Approaches to creative arts enquiry. London: Tauris, I.B. Kara, H. (2015) Creative Research Methods in the Social Sciences:  A Practical Guide, Bristol: Policy Press. Kumar, V. (2013) 101 Design Methods:  A Structured Approach for Driving Innovation in your Organization, Hoboken, N.J.: Wiley. Martin, B. and Hanington, B.M. (2012) Universal Methods of Design: 100 Ways to Research Complex Problems, develop innovative ideas, and design effective solutions, Beverly, MA: Rockport Publishers. Pei, E., Campbell, I. and Evans, M. (2011) ‘A taxonomic classification of visual design representations used by industrial designers and engineering designers’ The Design Journal, 14(1): 64–​91. Sanders, E.B.N. and Stappers, P.J. (2012) Convivial Toolbox: Generative Research for the Front End of Design, Amsterdam: BIS Publishers. Vaughan, L. (2017) Practice-​based Design Research, London: Bloomsbury Publishing. Yee, J. (2017) ‘The researcherly designer/​ the designerly researcher’ in Vaughan, L. (ed) Practice-​ based Design Research. London: Bloomsbury Academic.

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‘Crafting during Coronavirus’

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2 ‘Crafting during Coronavirus’ Creative diary approaches for participant-​centred research Naomi Clarke and Debbie Watson Introduction

When COVID-​ 19 emerged globally, researchers had to renegotiate research methods, their relationship with time and the unprecedented blurring of work and home. This raised questions of how to conduct methodologically and ethically sound creative research whilst being sensitive to lived experiences. Addressing this led to a focus on crafting and the potential benefits of diaries for capturing thoughts and feelings. There is a wealth of literature affirming the creative use of diaries (Välimäki et al, 2007; Kara, 2015; Mannay, 2016; Meth, 2017; Herron et al, 2019). However, diaries are time and energy consuming. This chapter offers a new insight into the ‘in-​ practice’ use of diaries through the ‘Crafting during Coronavirus’ research project.

‘Crafting during Coronavirus’

When fears around COVID-​19 started to take hold, Naomi saw that her Instagram feed was flooded with ‘lockdown making’ and ‘coronavirus creativity’. We did not want people’s narratives of making during this crisis to be lost and we wanted to bear witness to their thoughts and experiences as well as their makes. People’s experiences and thoughts are diverse, complex and subjective so creative methods, allowing participants to tell their story in their own words and in their own time, are both ethical and credible (Brinkman, 2012).

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Following ethical approval from the University of Bristol, the ‘Crafting during Coronavirus’ (CDC) research project was shared on social media platforms from 4 April 2020 with a weblink to Naomi’s website with project information (Clarke, 2020). Having an established online presence enabled participants to legitimize Naomi’s identity and experience. Naomi, a PhD student and crafter with 23 years’ experience, utilized her creative connections to extend the reach of the research. Relying on digital connections is complex. It can be beneficial for enabling access to a broad geographical dispersion of participants more cost-​effectively than most qualitative methods (Kara, 2015). It can also, however, bias the sample towards those with digital access and technical know-​how (Duffy, 2002). In total, 576 people signed the participation consent survey. All participants were emailed with an individual ‘welcome’ message including the ‘diary template’, information about the diary sections, time frames and encouragement to make the diary their own. Of the 576 participants, 120 withdrew. Of the remaining 456, 317 actively participated by regularly sharing their diaries, crafting, making and experiences. These participants (313 female, 1 male, 3 non-​gender binary) were aged between 21–​ 84 (average age 53) and from 19 countries with a majority (229) UK-​based. Why diaries?

Research methods should be chosen for their appropriateness to the research question and the philosophical groundings (Kara, 2015). The CDC project was framed around revealing the multiplicity of experiences in relation to participants’ experiences of the pandemic, their crafting and the interaction between the two which resulted in the choice of solicited diaries with photos. Despite long-​ standing use of diaries to record people’s lived experiences (from Samuel Pepys and Anne Frank 1. Pseudonyms have been used for some participants where they requested it, however, most participants wanted to be named by first name for their words and their makes.

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through to Mass Observation), diaries have not been widely used for researching crafting during crisis. The fact that diaries can be completed at varying times, in varying speeds and as intermittent entries, is positive in reflecting real-​life (and its messiness) more accurately than some methods. Diaries can be layered over time potentially strengthening participant autonomy and authorship over generating and sharing knowledge in their own way (Meth, 2017). They allow temporal access to lived experiences as participants can share their thoughts, understandings and reflections when they happen at, or close to, times that may otherwise be outside of ‘traditional’ data collection times (Meth, 2017). This felt particularly poignant where the diaries were utilized if someone crafted late or early in the day because they could not sleep, and needed an outlet for their thoughts: It offers a safe space for me to put in writing what I’m feeling when I’m crafting. It’s important to have a place to express your thoughts without being judged. And in this time of confinement, the diary can act as a sounding board. Since I can’t meet up with my pals, I can confide in the “Thoughts” category in the diary. (Wendy1, 69, USA, feedback survey)

All too often crafts (and needlework/​textiles) are perceived as feminine activities because of their domestic sphere links (Parker, 1984). With crafting and making often undertaken by women at home, utilizing a method that acknowledged this was key: As a working mum with very little time in ‘normal’ circumstances, I have very much enjoyed having more free time to sew in lockdown (without feeling exhausted or guilty) and the Diary has been a great opportunity to reflect on each week (and not just on sewing), as well as celebrate finished projects etc (Sue, 51, UK, feedback survey)

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Figure 2.1  French knots Source: author’s own

Why ‘photo elicitation’ alongside diaries?

Making and crafting are sensory experiences; words alone would be unlikely to capture the richness, breadth and depth of people’s embodied experiences (Adamson, 2010). The diary extracts and image from Theresa (49, UK) illustrate the power of combining words and visuals: I have decided to sew a French knot to represent every person that dies from covid-​19. I constantly feel so helpless

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in all of this and am sad at the number of deaths. This somehow helps me as I feel these deaths should never be forgotten and by visually representing them I am memorialising them in a very small way. It doesn’t stop me feeling helpless but it keeps my mind from worrying about it too much. (16 April 2020, diary)

We inhabit an increasingly visual world and these visuals are not static or finite but subject to ongoing interpretations (Mannay, 2016). Similarly, crafts and making are not static; as the maker creates, then the narratives, meanings and emotions develop and change (Turney, 2013). Crafts and visuals are elements within a larger narrative and the three (narratives, making and visuals) need to be acknowledged in their interactions throughout the research process whereby visuals are embedded within participant’s narratives and worlds (Mannay, 2016). Diaries with photo elicitation were used to capture the richness of narratives and experiences of participants who were invited to share crafting photos (in planning, progress or finished) alongside their diaries, not only to understand more about the item made, but to understand with the item made as an elicitation tool (Mannay, 2016): I have really enjoyed taking photographs of my progress –​it does help with writing about how I feel about a certain project. I can also look back and reflect on my progress. (Alison, 55, UK, feedback survey)

Inviting participants to share photos alongside their diaries, situates participants as experts on their crafting as they retain control over capturing and sharing their lives (Rose, 2016.) One of the difficulties of writing about craft is that we are putting into text something which is typically nondiscursive, so we used images as touchstone objects and for elicitation focus rather than data for analysis (Adamson, 2010). Visuals can join tactile crafting with text-​based diaries for reflection and to evoke exploration of feelings, experiences and memories (Mannay, 2016).

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Feedback survey

On the 15 May 2020, 228 participants (who were still sharing diaries) were emailed a link for a feedback survey on diaries as a research method. 168 participants completed this and, in line with the CDC’s participant-​centred, creative approach, these views are discussed below. 1.  Diary structure

Solicited diaries are kept by participants for researchers thus participants are aware from the start that the diary is not being made/​ written for private use (Meth, 2017). Typically, the researcher outlines some semi-​ structured or unstructured guidelines. Here, all participants were emailed with a downloadable diary template which included the headings: ‘Date’, ‘Location’, ‘What I’m crafting’, ‘Feelings/​ thoughts’, ‘Social Media’, ‘Any other thoughts/​reflections’ and ‘Photos of this craft’. Participants were sent a weblink to re-​ download the diary template if needed, and to see Naomi’s examples of her own ‘CDC’ diary entries as she reflexively positioned herself as participant/​ researcher/​ maker. Participants were encouraged to utilize the framework to support their ownership and authorship in recording their experiences and crafts. They were not limited to a single recording method and emailed their diaries, with photos, in diverse formats including handwritten accounts, email diaries, PDFs, videos, audio diaries and stitch diaries: I love recording, keep diaries, notebooks of scraps, pictures etc of projects completed and to be completed. (Sharon, 58, UK, feedback survey)

Meth (2017) argues that a diary framework can work particularly well for people who may be unused to, or feel daunted by, writing reflective accounts. This held especially true. In times of stress, human instinct is to search for something (or someone) to be a ‘secure base’ (Howe, 2011). In a world which felt out of control, and where routines were disrupted because of public fear and increased anxiety levels,

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the diary’s structure seemed to offer constancy and routine whilst allowing for creativity: I think having a practical project that needs to be worked on every day has really helped with the seemingly never-​ ending lockdown. It has allowed me to impose some sort of structure on the time and allowed me some sort of control in what has seemed like a very out of control time (Emma, 32, UK, feedback survey) 2.  Reflection and connection

Diaries offer participants space and time to capture the changes they deem relevant and to reflect upon, build, revise, explore and elaborate their views and experiences (Meth, 2017). The dominant narratives during the pandemic’s peak were those of loss, death, isolation and loneliness. The diaries, however, seemed to give voice to those unheard, everyday experiences where strong counternarratives of domestic creativity, craft and making emerged: I’ve never thought anyone else would be interested in the thought processes and feelings behind it. I’m actually a bit self-​conscious about keeping and sharing the diary. However, I love the idea that my voice gets to be one of the voices of Corona (and that I get to talk about one of my passions) (Susannah, 41, Australia, feedback survey)

This act of stopping, reflecting, exploring and sharing views through an ongoing diary was a positive experience for many participants: I have thoroughly enjoyed the process. It has made me think more about why I craft and why I enjoy it. It has felt like something just for me, completely apart from family life and the kids. I don’t work so I don’t have anything else just for ‘me’ at the moment (Nicola, 46, UK, feedback survey)

For some, this reflective period allowed people to learn more about their own interests and needs:

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When I sit down at the computer and start to describe what I am doing in the diary, and why, I find myself ‘communicating with myself’ and feeling an increased sense of self-​worth. My crafts have value to me and they help to define who I am. (Barbara, 68, Canada, feedback survey).

For others, this related to feeling connected with others: I love doing the diary and look forward to writing it and taking photos for sending. I am missing my sewing friends where we chat and see each other’s work so this process is like having a little sewing group where I can voice my thoughts and show my makes. It has helped me enormously during lockdown (Dorinda, 61, UK, feedback survey) 3. Rapport

There is a relational and situational ethics of diary research: they can be time intensive and place a big demand on participants (Herron et al, 2019). Naomi could not cast off her ‘crafter’ status, nor her prior knowledge or positioning. Instead, she was open and honest with participants about her positioning through sharing her own diaries and using them as a means of ongoing reflective practice, transparency and to acknowledge the lived experience of keeping a diary during the pandemic. Researchers can use diary methods without participating or having insider knowledge, but it can be beneficial for transparency and for establishing and building rapport between participants and researcher: I enjoy the process of someone who clearly understands the creative process and shares the enthusiasm for fabrics and creating (Lorraine, 61, UK, feedback survey)

Naomi replied individually to each diary/​image received. On a practical level, it helped to confirm and clarify the diaries/​ images being saved. It was also influenced by the situational ethics (each diary was acknowledged) and as part of an ongoing consent process so participants could clarify if they did not wish for that diary to be saved. Finally, it was

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guided by relational ethics as making is about connecting: with our hands, heads and hearts, we connect with those around us and we connect with ourselves (Gauntlett, 2018). This personal attention to every email was appreciated: Naomi’s positive encouragement and kind feedback have made me feel more confident in sharing my diaries. [This] was one of the nicest things I have done in years and I could only do this so frankly and openly because trust and confidence had been built. (Katy, 47, UK, feedback survey) Final thoughts

The CDC project encouraged and validated everyday making and crafting with the diaries providing a vehicle for people to share their experiences on their terms. In the context of a global pandemic, participants contributed to the making of a collective memory: ‘As a unifying process that provides a framework of meaning through which society maintains stability and identity, while adapting to social change’ (Misztal, 2003, p 73). Whilst the huge amount of data that has so far been received (some 18,739 files) has yet to be systematically analysed, it is evident that the diaries have provided a creative and participatory framework to enable the assembling of a collective patchwork memory of crafters and makers from many countries of the world. The argument we have outlined is that if diaries are chosen as the method for research during crisis then they will be most effective, most beneficial and most ethical when they are used in a creative, flexible, responsive and open-​ended manner.

References Adamson, G. (2010) ‘Introduction’, in Adamson, G. (ed) The Craft Reader. Reprint, London: Bloomsbury Academic, 2017, pp 1–​5. Brinkman, S. (2012) Qualitative Inquiry in Everyday Life: Working with Everyday Life Materials. London: SAGE Publications Ltd. Clarke, N. (2020) ‘Crafting during Coronavirus’ diary research. Available from:  https://​ naomiali c e . c o . u k / ​ c r a f t i n g - ​ d u r i n g - ​ c o r o n a v i r u s - ​ r e s e a r c h /​ [accessed 21 July 2020]

Duffy, M.E. (2002) ‘Methodological issues in web-​ based research’, Journal of Nursing Scholarship, 34(1):  83–​ 88. [Online] DOI: 10.1111/​j.1547-​5069.2002.00083.x [accessed 1 July 2020] Gauntlett, D. (2018) Making is Connecting:  The Social Power of Creativity, from Craft and Knitting to Digital Everything. 2nd edn. Cambridge: Polity Press. Herron, R. et al. (2019) ‘Using a flexible diary method rigorously and sensitively with family carers’, Qualitative Health Research, 29(7):  1004–​1015. [Online] DOI:  10.1177/​1049732318816081 [accessed 3 July 2020] Howe, D. (2011) Attachment Across the Lifecourse: A Brief Introduction. UK: Red Globe Press. Kara, H. (2015) Creative Research Methods in the Social Sciences:  A Practical Guide. Bristol: Policy Press. Mannay, D. (2016) Visual, Narrative and Creative Research Methods:  Application, Reflection and Ethics. Abingdon, UK: Routledge. Meth, P. (2017) ‘“Coughing everything out”:  The solicited diary method’ in Braun, V., Clarke, V. and Gray, D. (eds) Collecting Qualitative Data: A Practical Guide to Textual, Media and Virtual Techniques. Cambridge: Cambridge University Press, pp 94–​115. Misztal, B.A. (2003) Theories of Social Remembering, Maidenhead: Open University Press. Parker, R. (1984) The Subversive Stitch: Embroidery and the Making of the Feminine (Reprint, 2012), London: I.B.Tauris & Co Ltd. Rose, G. (2016) Visual Methodologies: An Introduction to Researching with Visual Materials (4th ed), London: SAGE Publications Ltd. Turney, J. (2013) ‘Crafty chats or whose craft is it anyway? Domestic discourse and making marginality matter’, in Sandino, L. and Partington, M. (eds) Oral History in the Visual Arts. London:  Bloomsbury Academic, pp 135–​142. Välimäki, T., Vehviläinen-​ Julkunen, K. and Pietilä, A-​ M. (2007) ‘Diaries as research data in a study on family caregivers of people with Alzheimer’s disease:  methodological issues’, Journal of Advanced Nursing, 59(1): 68–​76. [Online] DOI: 10.1111/​j.1365-​ 2648.2007.04273.x [accessed 9 July 2020]

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3 Decolonizing writing Situating insider–​outsider researchers in writing about COVID-​19 Duduzile S. Ndlovu Introduction

The purpose of this chapter is to explore the ethics of writing, informed by an insider–​ outsider researcher position that argues for a decolonial engagement. The discussion focuses on writing as a method of inquiry and the ways writing about COVID-​19 can be decolonized. This is significant beyond writing about COVID-​ 19 as it questions how research participants are included or not included in research writing and for whom we write. As such, I argue for a reimagining of research participants’ role and place in written research outputs.

The imperative to decolonize research engagements

Research has to rid itself of its colonial legacy, where that continues to give the researcher power to define and present the researched as specimens, for it to be a good engagement on the African context (Ndlovu-​Gatsheni, 2017). Good research engagement is complicated as it is about ‘finding your own way –​making your own path’ (Pedri-​Spade, 2016, p 389). To this end, Kumalo and Praeg (2019) argue that decoloniality has been co-​ opted as a discourse without much change in the status quo. The researcher has to carefully consider their process of generating, representing and disseminating knowledge. Good research engagement for indigenous researchers is based on establishing good relationships with all, as well as ensuring that the knowledge produced is not

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confined to obscure texts that are useless to indigenous peoples (Pedri-​ Spade, 2016). In talking about indigenous people it is important to highlight, as Ndlovu-​Gatsheni argues, that ‘coloniality continues to wreak havoc in the domains of culture, the psyche, the mind, language, aesthetics, religion and many others’ (2019, p 206). Decolonial approaches are not necessarily adopted in research just because indigenous researchers are involved. In this chapter, I explore my response to an invitation to write about Zimbabweans in South Africa in the wake of COVID-​ 19, which provides important reflections on research writing ethics. Ethics here are beyond the binary of judging something to be morally good or bad and refer instead to ethics that lead to questions, openness, curiosity and imagination, as in the aesthetics of poetry (Leggo, 2011). Eisner (2008) argues that the benefit of arts-​based research is that it leads to more questions, allowing us to see what we can never fully comprehend. Richardson and St Pierre (2018) argue for writing as a form of inquiry, a process that does not merely represent, but constructs. Reality does not precede the text, but is created by it. Writing the concluding poem for this chapter constructs a space for questioning the motivations and benefits of writing about Zimbabwean migrants in Johannesburg in the wake of COVID-​19. The chapter begins with a brief discussion of the context in which I was invited to write about how COVID-​ 19 would affect Zimbabwean migrants in South Africa. This is followed by a discussion of the relationship between the researcher and participant that is presumed by this invitation to write. I explore the ethics of writing and how my location as a Zimbabwean writing about Zimbabweans facilitated a different engagement. Lastly, I discuss the audience for research outputs and the need to imagine a wider audience for the texts produced out of research as one way of decolonizing research.

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The invitation

Prior to the COVID-​ 19 disruption I was participating in a global network of migration scholars working towards a journal special issue. In the wake of COVID-​ 19, some network members felt that a more pressing engagement was to shift our project’s focus to write about the pandemic. In light of this, there was an invitation to all network members to write about COVID-​19. Some members of the research network group were open to this invitation and saw an ethical imperative to write about the impact of COVID-​19 on the different migrant populations they work with, in different parts of the world. My response to this invitation was a knee-​ jerk rejection, which left me discomforted. Was I being lazy or short sighted; failing to welcome an opportunity to advance my career? As I was trying to explore my refusal to write about COVID-​19, I experienced the loss of my aunt, an event that I document in the poem below. Writing this poem helped clarify that this was a rejection of what Bhattacharya (2019) called a ‘global north sensibility’, which was incongruent with my place in the world. As a result of COVID-​19, the South African government initiated a lockdown where borders and industries were closed and people were restricted to their places of residence. During the lockdown, it was not physically possible to conduct any fieldwork. Fieldwork became ‘illegal’, but if it was legal it would have posed great health risks for all involved. So, if I had accepted the invitation, I would have had to craft a text based on previous work, and postulate on how COVID-​19 could shape things going forward. As an early career scholar, I am keenly aware of the imperative to be productive, as the saying goes, ‘publish or perish’. There are many critiques of the neoliberal productivity imperative in the academy, including by Pearce (2020), who makes poignant arguments for survival as a method. Negotiating this invitation therefore was intersected with my negotiating a place an as early career researcher who needs publications for career advancement. Similarly, the need for research funding sometimes affects the ways researchers in the global south negotiate their place within the academy. Researchers may be forced to fit their

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questions and what they write to the interests of the available funding. Even where funding seeks to undo this mimicry of colonial relationships, it may still inadvertently lead to unequal research partnerships (Grieve and Mitchell, 2020). I was invited to write about how COVID-​ 19 was impacting the Zimbabwean community in South Africa. As a Zimbabwean I share in some of the ways COVID-​19 has impacted people in South Africa. With the closure of borders, many Zimbabweans in South Africa, including myself, who lead transnational lives, moving food and medication across the border, struggled to imagine how we would navigate this. In addition to worrying about those across the border, many were worried about their livelihood in South Africa amidst xenophobic threats, for example the hashtag #Zimbabweansmustfall on Twitter, meaning Zimbabweans being told to go back to Zimbabwe, accused of taking jobs from South Africans and of crime. The request to write about COVID-​ 19 assumed the ‘researcher’ could write about Zimbabweans in South Africa with no affective relationship to them. I was assumed to have the emotional resilience needed to write about them/​us and the impacts of a global pandemic as it occurred. The assumed distance between myself as researcher and the people, community or subject of study pervades the way research relationships are imagined, even in research training. It was important for some members of our network to write about how refugees, asylum seekers and migrants were experiencing the COVID-​ 19 pandemic. Rightfully so, as some of the public health responses to the pandemic were, in different ways, deepening the marginalization of these communities. As Jacobsen and Landau (2003) argue, research should be useful for policy makers, and writing about COVID-​ 19 could usefully inform policies going forward. However, how could this research be useful for the migrant communities beyond the ways researchers have imagined it to be useful? This highlights the importance for a decolonial engagement beyond that which presents the researched as specimens (Ndlovu-​Gatsheni, 2017). Such an engagement requires an invitation to communities to participate in all stages of the research –​from the initiation of the study, to

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an equitable engagement in the selection of methods, to the way in which the study is conducted, and in the output of the research to ensure that it is useful for the participants and not only aimed at policy or the academy. In this chapter, however, I will only focus on writing. How we can reimagine the way we involve research participants in research writing and think of them as partners and not just a repository of answers for our questions, as if they do not have questions of their own.

Reimagining research relationships

Concerning the relationships formed between participants and myself as an insider researcher, in the research for my PhD thesis, I found that aside from obtaining informed consent from participants, there was another layer of negotiations predicated on my insider status. Participants expected that as an insider I would have a deeper understanding of what the community valued and I would engage with them in light of this. A different moral ethic was at play governed by cultural values assumed to be shared, for example not arguing with a person older than myself. However, the research ethics training I received did not prepare me for this additional insider layer of negotiation. As Kalinga (2019) argues, this tends to be invisible to outsiders. The tension of this invisible layer of power negotiations in the research process led me to focus on the significance of including participants in the texts we produce from research. Being an insider–​outsider researcher (Dwyer and Buckle, 2009) came with challenges and opportunities. It brought expectations from participants predicated on my being part of their group, on the one hand, and the imperative to produce the kind of knowledge the academy rewards, on the other. This resulted in a different engagement to that imagined by the research methods training I had received. Participants’ informed consent did not mean a surrender of all control in the research. They attempted different ways to influence how the research proceeded and tried to gain benefit from their participation (Ndlovu, 2017). This was a reminder of the

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ethical requirement to include participants meaningfully in the output of the research. Insights from my PhD research encounters now inform how I build research relationships, including the decision not to write about Zimbabweans in South Africa and their experiences of COVID-​19 that I discuss here. Academic publications tend to be behind paywalls, at times even the author cannot access the work. Furthermore, the genre and language in which academic publications are written are also relatively inaccessible. In this way, research continues the colonial trope in producing knowledge that is not geared towards the researched’s consumption (Pedri-​ Spade, 2016). Césaire (2001) argues that colonialism at its core is about dehumanizing and research methodology was born a handmaiden of colonialism and imperialism (Ndlovu-​ Gatsheni, 2017,187). Writing about COVID-​19 at the time when the invitation came, would have mimicked a colonial research engagement. I would have written about COVID-​19 as an outsider looking in, seeking responses to my questions without an engagement with the broader community’s interests. Furthermore, the text produced may not have been of interest to the community. After turning the memoirs of a refugee man, Asad, into a book, Steinberg (2015) notes with despondency that Asad had no interest in reading the book. The protagonist in this tome was not invested in reading it. Writing about COVID-​19 risked producing such a text for the consumption of anyone but the main protagonist in the research story, a posture the Zimbabweans I had worked with in my prior research had resisted. Bhattacharya (2019) talks about the presumptive researcher who engages with a participant, without giving room for participants to influence the interaction. Oakley (1981) had earlier critiqued the masculine assumptions underlying the research interview training she had received. The interview was not a one-​way engagement where the participant was involved as an information reservoir and the researcher the miner pulling data out of them. The researched had the audacity to talk back and ask questions, upending the way ‘things are supposed to work’. The researched have questions

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to ask about their lives beyond what the researcher wants to know.

Writing as inquiry

Writing about COVID-​19, to further productivity measures and increase likelihood of promotion without shifting conditions for those we write about, is akin to what Źižek (2009) argues against: charity acts that do not shift systemic violence, that maintain the status quo, which produces poverty. The poem concluding this paper writes about myself instead, allowing me to come to a clearer understanding of my rejection of the invitation to write. It constructs a world in the poem that includes the different ways I am situated in this pandemic. Familial relationship identities intersect with the academic researcher’s identity, facilitating a space that questions the motivations for documenting migrants’ experiences of COVID-​ 19 and humanizes the potential research participants. As Leggo (2011) argues for an engagement with poetry that asks ‘What is the poem good for?’ and not ‘Is this a good poem?’, we should strive for an engagement with research that asks ‘What is the research good for?’ and not ‘Is this research good?’. This poem proves itself good for reflecting on my proximity to Zimbabwean migrants in South Africa as an academic as well as on the impact of the COVID-​ 19 pandemic that influences my stance. The experience of my different locations is more aptly captured as an intersection (Crenshaw, 1989; Yuval-​Davis, 2006; Carstensen-​Egwuom, 2014) where I simultaneously occupy these positions: an early career researcher, a Zimbabwean in South Africa, a daughter, mother, niece, and so on. As a researcher participating in a funeral wake for my aunt via a WhatsApp group, I found so many things I could write about that linked directly to COVID-​19. However, as a niece, I could not bring myself to desecrate the sacred moment of my aunt’s passing by translating it into a text for the academy. These competing interests came from my positioning predicated on a familial relationship that by its nature humanizes the other, versus

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one that sees a data point. This clarified the discomfort I found in writing about Zimbabweans in South Africa during the COVID-​19 pandemic. Further, it is instructive of the questions we need to ask when we think about writing. The genre of poetry further allows for a broader audience beyond the academy and the inclusion of complexity and emotion (Godsell, 2019). This world Going through this world A researcher A mother A black woman A sister My aunt has died        Oh  Sorry Yes it’s sad but I never met her You wouldn’t understand why it matters today Would you? She is my father’s cousin Their fathers were brothers Yeah they make these jokes all the time        White people: she is my  cousin        Black people: you see our grandmothers’         fathers were brothers Anyway she died in this time of covid19 The borders are closed Her daughter is in Botswana Zimbabwean law says burial has to happen within 48hrs I am told So WhatsApp it will be All the funeral pleasantries I mean sensibilities Nothing pleasant about greeting each other Acknowledging the passing of another It’s a wake in every aspect

2. Ewallet is a system of sending and receiving cash via mobile telephones.

Decolonizing writing

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There is sharing of scripture to comfort Hymns to console and Here I am a researcher observing This is how we meet On WhatsApp to Ewallet2 our financial tears This is a paper about the impact of covid19 Dare I write about this? Death Is sacred Mourning is too deep for the research archive This is the point I decolonise Why should we organise and archive this moment For who to know? and then do what with that knowledge?

References Bhattacharya, K. (2019) ‘Theorizing from the streets: De/​colonizing, contemplative, and creative approaches and consideration of quality in arts-​based qualitative research’, in Denzin, N.K. and Giardina, M.D. (eds), Qualitative Inquiry at a Crossroads: Political, Performative and Methodological Reflections. Abingdon, UK: Routledge, pp 109–​125. Carstensen-​ Egwuom, I. (2014) ‘Connecting intersectionality and reflexivity:  Methodological approaches to social positionalities’, Erdkunde, 68(4): 265–​276. Available from: http://​www.jstor.org/​ stable/​24365247 [accessed 23 September 2020] Césaire, A. (2001) Discourse on Colonialism. New York, NY: New York University Press. Crenshew, K. (1989) ‘Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics’, University of Chicago Legal Forum, 140: 139–​ 167). Available from: http://​chicagounbound.uchicago.edu/​uclf/​ vol1989/​iss1/​8 [accessed July 2020] Eisner, E. (2008) ‘Art and knowledge’, in Knowles, J.G. and Cole, A.L. (eds), Handbook of the Arts in Qualitative Research, Thousand Oaks, CA: SAGE Publications, pp 3–​12. Dwyer, S.C. and Buckle, J.L. (2009) ‘The space between:  On being an outsider-​insider in qualitative research’, International Journal of Qualitative Methods, 8(1): 54–​63. Grieve, T. and Mitchell, R. (2020) ‘Promoting meaningful and equitable relationships? Exploring the UK’s Global Challenges Research Fund (GCRF) funding criteria from the perspectives of African partners’, The European Journal of Development Research, 32: 514–​528.

DOI:  https://​doi.org/​10.1057/​s41287-​020-​00274-​z [accessed 20 July 2020] Godsell, S. (2019) ‘Poetry as method in the history classroom:  Decolonising possibilities’, Yesterday and Today. The South African Society for History Teaching (SASHT), 21: 1–​28. Jacobsen, K. and Landau, L.B. (2003) ‘The dual imperative in refugee research: Some methodological and ethical considerations in social science research on forced migration’, Disasters, 27(3):  185–​206. DOI:  https://​doi.org/​10.1111/​1467-​7717.00228 [accessed 28 January 2009] Kalinga, C. (2019) ‘Caught between a rock and a hard place: Navigating global research partnerships in the global south as an indigenous researcher’, Journal of African Cultural Studies, 31(3): 270–​272. Kumalo, S. and Praeg, L. (2019) ‘Decoloniality and justice a priori’, Journal of Decolonising Disciplines, 1(1): 1–​10. Leggo, C. (2011) ‘What is a poem good for? 14 possibilities’, Journal of Artistic and Creative Education, 5(1): 32–​58. Ndlovu, D. S. (2017) Let me tell my own story: An exploration of how and why ‘victims’ remember Gukurahundi in Johannesburg. PhD thesis. University of the Witwatersrand. Ndlovu-​Gatsheni, S. (2017) ‘Decolonising research methodology must include undoing its dirty history’, Journal of Public Administration. South African Association of Public Administration and Management (SAAPAM), 52(Special Issue 1): 186–​188. Ndlovu-​Gatsheni, S. J. (2019) ‘Discourses of decolonization/​decoloniality’, Papers on Language and Literature, 55(3): 201–​226. Oakley, A. (1981) ‘Interviewing women:  A contradiction in terms’, Doing feminist research, 30(6): 1. Pearce, R. (2020) ‘A methodology for the marginalised:  Surviving oppression and traumatic fieldwork in the neoliberal academy’, Sociology, 54(4): 806–​824. DOI: doi:10.1177/​0038038520904918 [accessed 27 July 2020] Pedri-​Spade, C. (2016) ‘“The drum is your document”: Decolonizing research through anishinabe song and story’, International Review of Qualitative Research, 9(4): 385–​406. Richardson, L. and St Pierre, E. (2018) ‘Writing: a method of inquiry’, in Denzin, N.K. and Lincoln, Y.S. (eds) The SAGE Handbook of Qualitative Research, (5th Edition), Thousand Oaks, CA: SAGE, pp 1410–​1444. Steinberg, J. (2015) A Man of Good Hope. New York, NY: Vintage. Yuval-​ Davis, N. (2006) ‘Intersectionality and feminist politics’, European Journal of Women’s Studies, 13(3): 193–​209. Žižek, S. (2009) Violence:  Six Sideways Reflections. New York, NY: Picador.

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4 Pandemic tales Using story completion to explore sense-​making around COVID-​19 lockdown restrictions Virginia Braun, Victoria Clarke and Naomi Moller

Let’s start our tale about researching in a pandemic with the beginning of a story: Sam has been keeping in touch with friends online during the COVID-​19 Lockdown, and learned that some of them are going to meet up in the big local park, just after dark, to hang out and have a drink… They’re encouraging Sam to come along…

We invite you to imagine how you might tell the rest of this story, or indeed to go ahead and write it. We ask you to then reflect on what emotions this scenario evokes for you. The research we describe in this chapter stemmed from emotional responses –​personally felt, and witnessed –​to a global crisis, and specifically to an unprecedented ‘lockdown’ of normal life. In response to the COVID-​19 pandemic, the UK and Āotearoa/​New Zealand (NZ) went into full lockdown at the same time (24 and 25 March 2020, respectively). The research we describe took root in several emotion-​ filled (virtual) conversations related to media coverage of high-​ profile public figures breaching the COVID-​19 pandemic lockdown rules. We also witnessed and discussed friends and strangers online justifying why it would be okay for them to bend or break lockdown rules, alongside people urging others not to rush to judgement. Our emotional responses reflected many

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experiences and positions. We were personally significantly impacted: one of us was shielding (isolated at home) due to health risk; one was ordered home from overseas by their employer, disrupting several months of planned work and travel; and one has three teenage children whose lives have been upended by the sudden closure of schools/​universities, with huge impact on their wellbeing. We are also natural rule followers –​when we see those rules as working for collective good. Further, as critics of neoliberalism, we saw this rule bending or breaking as evidence of the privileging individual entitlements over collective interests. What we were witnessing on the news and in online social spaces not only frustrated and angered us, it piqued our curiosity as psychologists. As a group, we have training in social psychology, where rule breaking and conformity are core concerns, and interests in health and wellbeing. That piqued curiosity led us to explore how NZ and UK residents made sense of rule breaking and compliance in relation to the COVID-​19 pandemic lockdown. The topic is crucial from a public health point of view –​for (extreme) restriction to be an effective public health intervention, compliance matters (Kraemer et al, 2020; Wilder-​Smith et al, 2020). Language also matters in public health (Krisberg, 2018). Meaning-​making is central to understanding when, what and why people will comply with, or not (Brzezinski et al, 2020; Painter and Qui, 2020). To be successful, the language and concepts of public health advice need to be based in the meaning-​making worlds of the people they apply to. Beyond the immediacy and importance of the topic, our curiosity was also piqued as qualitative methodologists. We had been exploring the use of a method –​story completion (SC) (see Clarke et al, 2019) –​that we felt was perfectly placed to explore meaning-​ making around lockdown restriction compliance and resistance. SC also potentially offered an ethical and viable way to research in a situation of crisis –​ researching the pandemic lockdown, while under lockdown ourselves. Our experience suggests SC is useful for efficiently and ethically researching meaning-​making about crises of all kinds, (not just) in circumstances that disrupt and delimit research possibilities.

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Introducing story completion

SC is a creative method that involves participants writing a story in response to a story stem or cue –​like the scenario that opened this chapter. SC is a novel method for qualitative research, but its use emerged from a century-​long history as a clinical assessment tool and quantitative research technique within the framework of a ‘projective test’. Knowing a little of this history is important for understanding how we and others conceptualize SC as a qualitative technique, and what we take from its history as a projective. Projective tests originated from the psychoanalytic tradition. They provide the test-​taker with an ambiguous stimulus to respond to –​ such as the opening sentences of a story, pared right back and/​or containing some deliberate ambiguity and narrative tension. Projectives are theorized to reveal the ‘hidden depths’ of our personalities: people are assumed to ‘project’ into their responses feelings they are unaware of, or do not feel comfortable disclosing directly. Clinical assessment and quantitative SC research focus not on narrative detail in its own right, but what it reveals about the psychology of the story teller. In quantitative SC research, complex coding systems have been devised to translate the narrative detail of the stories into numerical data for statistical analysis. Stories are categorized into types, supposedly evidencing various psychological characteristics, and relationships sought with other variables. Limited early use of SC in qualitative research retained this ‘hidden depths’ conceptualization. It wasn’t until Kitzinger and Powell (1995) retheorized SC as accessing social as well as psychological meanings that its full potential as a qualitative research tool began to be realized. Kitzinger and Powell argued that the narrative detail of the stories could be understood as reflecting essential psychological truths of the story writers. But just as –​maybe even more –​plausibly, the narrative detail could also be interpreted, through a social constructionist lens, as ‘reflecting contemporary discourses upon which subjects draw in making sense of experience’ (pp 349–​350). In this rendering, participants are not expected to reveal themselves through the stories they write, but rather

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the meaning-​making worlds they operate within. The contexts that provide the interpretative logics and rationalities for what we think (is possible), and what we consequently do. It is this latter conceptualization of SC as accessing social meanings and discourses, and dominant assumptions and norms, that has been influential in contemporary qualitative uses. It is also what made it so suitable for our project. In responding to a story stem, participants are not asked to tell us what they would do, but imagine and make sense of what the character might or would do, in the situation presented.

Using story completion to explore a crisis

In Kitzinger and Powell’s (1995) use, the story stem focused on an ambiguous moment of personal relational crisis –​potential infidelity. Contemporary qualitative SC has continued to explore moments of personal, relational or domestic crisis, such as the discovery of relational infidelity (Clarke et al, 2015) or a partner secretly masturbating or refusing sex (Beres et al, 2019; Shah-​Beckley et al, 2020). This use has demonstrated the potential of the method to access meaning-​making around topics that can be difficult –​ for all sorts of reasons –​for people to discuss in person. Our interest was in using SC to explore a crisis on a much larger scale –​the unprecedented global pandemic and our home Government-​mandated lockdowns. It was a time of extreme stress and uncertainty, with unimagined restrictions on movement and an urgent need for compliance in two neoliberalized countries. Countries that usually prioritize individual freedom and agency. We hoped SC would capture socially embedded meaning-​making and discourses surrounding rule compliance, resistance and breach. In media coverage and in online spaces, there seemed to be a tension between acting in one’s own interest or for the wider public interest –​a tension between me and we (see Jetten et al, 2020). The official narrative around lockdown centred on personal sacrifice for the greater good. New Zealanders, for instance, were exhorted to ‘behave as if you have COVID-​19’ (Graham-​McLay, 2020) and comply with mandates to act

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in ways that will avoid giving it to others. Such logics were challenged by personal risk meaning frameworks, where activities that broke the rules, such as going surfing, or on a long bike ride, were framed solely in terms of the personal risk to the (would-​be) surfer or cyclist of contracting the virus. Our first task was to wrestle our frustrations and curiosity into a meaningful research question. We realized that what we were ultimately interested in was the underlying logics, rationales and meaning-​making frameworks deployed around lockdown rule compliance or breaching. We felt this would produce knowledge useful for both social psychology and public health. When faced with an unprecedented set of highly restrictive rules, what sorts of information do people have available to them to make sense of their radically changed world? How might these meaning frameworks justify breaching rules, or complying with them? We settled on an initial research question:  how do members of the UK and NZ public make sense of COVID-​19 lockdown rule breaking and compliance? This question is fairly open, mindful that one of the joys and challenges of SC is that the data are rarely predictable if the stem is designed well (see Clarke et al, 2019). To try to parse out whether meaning-​ making around the rules and compliance/​breaching was fairly uniform or nuanced, we designed six different stems. As is typical for qualitative SC, these brief scenarios took a third person stance, presenting characters embroiled in a moment of deliberate tension from the perspective of an omniscient narrator. Each stem described a character or characters contemplating or witnessing potential rule-​ breaking. The scene settings reflected scenarios we had read about, including lockdown breach scenarios covered by media. Often, SC research gives the participant a fairly open and non-​directive response task, to simply write ‘what happens next’ (Clarke et al, 2017). We opted for more directive completion instructions. Participants were asked to write a story that focused on the protagonist’s decision-​making process, what decision they made, and what the consequences of that were. We contemplated how many stories we should ask participants to write (other studies vary from one to six; Clarke et al, 2019), and settled on two

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(randomly allocated). Second completions are often longer, perhaps indicating that participants become more comfortable and engaged with the task (Shah-​Beckley et al, 2020). With a suggested writing time of around ten minutes per story, two completions felt like a reasonable ‘ask’ of participants in the circumstances. Indeed, only three out of 144 participants didn’t complete both stems. Practically, SC is well suited for online delivery (Clarke et al, 2017), a vital consideration for researching under lockdown –​ with advantages for anonymity, relative non-​intrusiveness and participant control over completion. However, researching online proved unexpectedly challenging in this context, specifically related to recruitment. The study went live in late April 2020. We shared the call for participants through academic and personal networks on social media (for those of us engaged), and with friends, family and work colleagues over email. We always asked people to share with others who might be interested in participating. Virginia did a press release that led to a NZ national radio interview and news coverage. We contemplated approaching the admins of Facebook groups for the local area in which Victoria and Naomi lived, where we had witnessed some heated discussions about locals and visitors breaching lockdown. On balance, we decided this would be inappropriate as the research was not themed around the local context. We hoped for about 300 participants/​600 completions split across the two countries. We stopped data collection after approximately two months –​over the period of lockdown and its easing (the timing and process of the latter varied for NZ and the UK) –​at which point we had 144 participants and 285 completed stories. Recruitment challenges contrasted sharply with our previous experiences of online recruitment (for example, recruiting people with a particular health condition and easily meeting our recruitment target through advertising in online networks for that condition). It may simply reflect the context and demands of the pandemic. It might also relate to not having any ‘angle’ for recruitment other than seeking literate people aged 18 or older. Despite the lower number of completions, we were surprised and delighted by the detail, richness and length of the stories. Some stories were over 1,000

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words, and mean story length (one marker of data adequacy) was 262 words, higher than in some previous research (Clarke et al, 2019). We can only speculate about why the stories were so rich and detailed. It may reflect some of the characteristics of the participants –​mostly highly educated and used to expressing themselves in writing. It may also be that being asked to write stories about living in lockdown, whilst living in lockdown, resonated for participants and made the task an especially engaging and cathartic one.

Using story completion in a crisis

Despite our passion for the SC method, we did pause to reflect on whether SC was the right method for this topic at this time. The method perfectly suited our interest in socially located meaning-​making. In the pandemic context, SC seemed to offer an ethically appropriate approach. This was especially the case given that we were researching something the participants were living through at the time of data collection –​a high uncertainty context with the potential for all sorts of situational vulnerabilities. Using SC, we would not be asking people for views directly, and therefore implicitly positioning them as accountable for those views. SC may be a broadly ethical method in this context, but the ethics of doing research in a global (and local) pandemic is one that has garnered considerable interest, as many academics seized the opportunity of the radically transformed world (Inge, 2020), asking a wide range of questions. Some of these studies were unquestionably urgent, appropriate, high quality; others were ethically problematic (Townsend et al, 2020). Questions have been raised about the appropriateness of apparent research motivations (self-​ interest versus prosocial), and academics conducting research outside their areas of expertise. In this context, we considered whether we should do the research at all. This project is not directly related to our empirical scholarship, though with expertise, interest and prior research in physical and mental health and social psychology, it’s not entirely removed (see also Braun, 2008). Methodologically, the project aligns with our interest in

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exploring the potential of SC as a qualitative method and developing our understanding of SC design. More importantly, we asked ‘Was this what people in lockdown needed?’ Participants would write stories while living in the contexts of the stories. Casual feedback on SC in previous studies says that it’s fun; in this case, several participants publicly (for example, via Twitter) expressed enjoyment or catharsis in participating. The well-​documented therapeutic benefits of expressive writing (Sexton and Pennebaker, 2009) suggested SC might have offered participants something of benefit. We have yet to analyse the data, but the stories seem to reflect the live and heartfelt debates about lockdown rule breaking in our families, and among friends and strangers online. The SC context mimicked the worlds we were living in during COVID-​ 19 lockdown, where rules, regulation, adherence and breach were being made sense of in everyday moments, with potentially grave consequences. This method provided an immediacy of access to people’s meaning-​making contexts. The vivid, detailed, dramatic pandemic tales gathered will –​ we hope –​foster understanding of how populations engage with and make sense of public health messaging, for better or worse outcomes.

References Beres, M.A., Terry, G., Senn, C.Y. and Ross, L.K. (2019) ‘Accounting for men’s refusal of heterosex: A story-​completion study with young adults’, The Journal of Sex Research, 56(1): 127–​136. Braun, V. (2008) ‘“She’ll be right”? National identity explanations for poor sexual health statistics in Aotearoa/​New Zealand’, Social Science & Medicine, 67(11): 1817–​1825. Brzezinski, A., Kecht, V., Van Dijcke, D. and Wright, A.L. (2020) ‘Belief in science influences physical distancing in response to COVID-​19 lockdown policies’, University of Chicago, Becker Friedman Institute for Economics Working Paper (2020–​56), [online], 30 April. Available from:  https://​bfi.uchicago.edu/​working-​paper/​belief-​in-​science-​ influences-​physical-​distancing-​in-​response-​to-​covid-​19-​lockdown-​ policies/​[accessed 28 July 2020)] Clarke, V., Braun, V. and Wooles, K. (2015) ‘Thou shalt not covet another man? Exploring constructions of same-​sex and different-​sex infidelity using story completion’, Journal of Community & Applied Social Psychology, 25(2): 153–​166.

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Clarke, V. Hayfield, N., Moller, N. Tischner, I. and the Story Completion Research Group (2017) ‘Once upon a time…: qualitative story completion methods’, in V. Braun, V. Clarke and D. Gray (eds) Collecting Qualitative Data: A Practical Guide to Textual, Media and Virtual Techniques, Cambridge: Cambridge University Press, pp 45–​70. Clarke, V., Braun, V., Frith, H. and Moller, N. (2019) ‘Editorial introduction to the special issue:  Using story completion methods in qualitative research’, Qualitative Research in Psychology, 16(1): 1–​20. Graham-​McLay, C. (2020, 25 March) ‘Ardern urges New Zealanders to “act like you have Covid-​19” as lockdown looms’, The Guardian [online]. Available from:  https://​www.theguardian.com/​world/​ 2020/​mar/​25/​ardern-​urges-​new-​zealanders-​to-​act-​like-​you-​have-​ covid-​19-​as-​lockdown-​looms [accessed 28 July  2020] Inge, S. (2020, 15 May) ‘Scramble for COVID-​19 R&D funds raises concerns over quality’, Research Professional News [online]. Available from:  https://​www.researchprofessionalnews.com/​rr-​news-​uk-​ universities-​2020-​5-​r ush-​for-​covid-​19-​r-​d-​funds-​raises-​concerns-​ over-​quality/​[accessed 28 July 2020)] Jetten, J., Reicher, S.D., Haslam, S.A. and Cruwys, T. (2020) ‘A social identity analysis of COVID-​19’, in J. Jetten, S.D. Reicher, S.A. Haslam and T. Cruwys (eds) Together Apart: The Psychology of COVID-​19, London: Sage, pp 20–​31. Kitzinger, C. and Powell, D. (1995) ‘Engendering infidelity: Essentialist and social constructionist readings of a story completion task’, Feminism & Psychology, 5(3): 345–​372. Kraemer, M.U., Yang, C.H., Gutierrez, B., Wu, C.H., Klein, B., Pigott, D.M., Open COVID-​19 Data Working Group, du Plessis, L., Faria, N.R., Li, R., Hanage, W.P., Brownstein, J.S., Layan, M., Vespignani, A., Tian, H., Dye, C., Pybus, O.G. and Scarpino, S.V. (2020) ‘The effect of human mobility and control measures on the COVID-​19 epidemic in China’, Science, 368(6490): 493–​497. Krisberg, K. (2018) ‘What’s in a word? How language affects public health: Research shows word choices can influence well-​being, treatment’, The Nation’s Health, 48(2): 1–​10. Painter, M. and Qiu, T. (2020) ‘Political beliefs affect compliance with COVID-​19 social distancing orders’, SSRN [online], 3 July. Available from:  https://​ssrn.com/​abstract=3569098 [accessed 28 July 2020] Sexton, J.D. and Pennebaker, J.W. (2009) ‘The healing powers of expressive writing’, in S.B. Kaufman and J.C. Kaufman (eds) The Psychology of Creative Writing, New York:  Cambridge University Press, pp 264–​273. Shah-​Beckley, I., Clarke, V. and Thomas, Z. (2020) ‘Therapists’ and non-​therapists’ constructions of heterosex: A qualitative story completion study’, Psychology and Psychotherapy:  Theory, Research and Practice, 93(2): 189–​206. Townsend, E., Nielsen, E., Allister, R. and Cassidy, S.A. (2020) ‘Key ethical questions for research during the COVID-​19 pandemic’, The Lancet Psychiatry, 7(5): 381–​383.

Wilder-​Smith, A., Chiew, C.J. and Lee, V.J. (2020) ‘Can we contain the COVID-​19 outbreak with the same measures as for SARS?’, The Lancet Infectious Diseases, 20: e102–​107.

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II

Part 

Exploring ethics

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Conceptualizing research ethics

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5 Conceptualizing research ethics in response to COVID-​19 Moral and economic contradictions Vanessa Malila Introduction

This chapter provides a conceptual approach to social science research ethics emerging during the COVID-​19 pandemic, examining parallel issues which arose during the crisis around morality and economics. This juxtaposition between these contradictory concepts poses a number of challenges for researchers and research ethics across all disciplines. At a time when social research is recognized as essential to overcoming and learning from the global crisis, one question faced by researchers is how to navigate their moral obligations while conducting impactful and economically sustainable research. While this may be a consideration of research conducted at any time, it is particularly relevant during the COVID-​19 crisis. It mirrors the narrative around the entire pandemic –​where do our moral obligations end and our economic ones begin? How can we continue to ensure the health and safety of a global population while ensuring the global economy does not collapse? Where do we draw the line in terms of prioritizing particular populations over others? All these questions are not only driving the morality versus economics debate with regards to responses to the pandemic but also specifically in the case of conducting research during a pandemic. This chapter provides insight into the particular challenges faced by researchers during the pandemic using a conceptual literature review of academic literature and online material. It aims to provide a resource to encourage and develop

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thinking about research ethics during particularly difficult global situations. The chapter draws on the theoretical debate between utilitarianism and deontology to further this examination and provides a framework from which to view research ethics during a period of flux, where the line dividing utilitarianism and deontology is fluid, ever-​changing and dynamic. This chapter emerged from immersion in the COVID-​19 crisis as a researcher in international development and considering my own position in relation to research ethics. As I considered the impact of the crisis on research practice and ethics, I was struck by the way questions around research ethics mirrored the global narrative. This chapter is the culmination of a review of academic and online literature. The literature was found using academic databases (JSTOR, Project Muse, ProQuest, Google Scholar, Academia and ResearchGate) and used the following search terms: COVID, coronavirus, economics, economic crisis, ethics, moral, morality, ethical responsibility, deontology and utilitarianism in different combinations. In terms of understanding the context, the sample period was limited to literature published between December 2019 and June 2020. Initial thematic analysis resulted in three broad themes:  COVID-​19 ethics, COVID-​ 19 economics and research ethics. Within these, further thematic analysis revealed shifting trends in the writings as the context changed over time. In terms of the global pandemic, there was a shift from writing about the economic impact, then writing about changes in global economic shifts and, more recently, writing about future scenario planning and what the future is likely to hold for the global economy. In terms of research, the themes that emerged followed the changes in context, starting with thinking about research in the COVID-​19 context, then starting to question research ethics at the project level and finally considering global research ethics during a pandemic. This chapter has not considered the role of research ethics committees, the role of research ethics in monitoring, evaluation, accountability and learning which have been significantly affected by the crisis, or research ethics beyond the social sciences. This chapter is by no means an attempt at

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comprehensive insights into research ethics during the crisis. It is an attempt to unpack some of the questions and trends that I’ve seen during this challenging time and ways to consider thinking about research ethics in future crisis contexts.

Health vs wealth: Understanding the COVID context

COVID-​19 emerged in late 2019 and initial reactions were largely focused on the public health impact of the virus. The World Health Organization (WHO) declared a pandemic on 11th March 2020, shifting individual perceptions towards global concern and responses. At the same time WHO made its announcement, questions around the economic impact of COVID-​19 grew louder. Of the articles reviewed, many started to question the global economic impact of COVID-​19 in March/​April 2020 (Favero et al, 2020; Friedman, 2020; Katsikas, 2020; Peterson and Thankom, 2020). As the public health crisis spread across countries, concerns around the impact of shutting down economies began to inform debates about the nature of the global crisis. By May 2020, ‘over a third of the world’s population are under social distancing and stay-​at-​home lockdown measures in an attempt to attenuate the spread of the virus’ (Palma et al, 2020). However, many European countries started to relax restrictions and ‘open’ as their COVID-​19 cases dropped. As some countries started to ease lockdown measures, the rhetoric around the global crisis shifted from a public health response towards a greater emphasis on public finances and the global economic impact of the lockdown. Katsikas (2020, p 2) notes that ‘effective tackling of the pandemic, in both health and economic terms, requires an ambitious fiscal approach’. There was an increasing acknowledgement that ‘if we direct expenditures towards, say, public health we are giving up something else’ (Gans, 2020, p 10). As economies opened and there was a growing recognition that the global economic impact would be severe, there was also a growing recognition that this could bring into question the pre-​COVID-​19 global economic world order. Morillas (2020, p 1) sums this up well when he says ‘questions will

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be asked about our democracies, the authoritarian regimes of others and the values of different societies; changes in the international order, especially at the ideational level; the rise of populism and “my country first” discourse; the prospects for international cooperation in a rejigged global order’. The term ‘normal’ had been bandied about from the beginning of the crisis, with changes in society being regarded as ‘the new normal’, but also calls to ensure things do or don’t ‘return to normal’. Regardless of whether ‘normal’ is possible, what is clear from the literature analysis is that there are questions about global shifts in economics, politics and social orders (CFA Institute, 2020; McKibbin and Fernando, 2020; Singh et al, 2020).

Ethics at a time of crisis

As these broader economic trends emerged, they seemed to mirror the trends playing out within research ethics in the context of COVID-​19. Societies, governments and global institutions were grappling with difficult ethical decisions underlying their responses to the pandemic. These moral and ethical debates were often at the heart of the tension between public health and economic priorities. The question that arose in the literature was not whether trade-​offs exist between maintaining public health and the economy, but how these trade-​offs are best calculated or determined. Page argues (2020, p 18) that ‘unfortunately, avoiding unpleasant trade-​offs is just not possible in a pandemic situation’. While early literature on the trade-​offs resulting from COVID-​19 were strongly related to public health resources, such as who should be allocated ventilators or hospital beds (Haward et al, 2020), these soon shifted to broader questions around when and how to open and rebuild the economy despite the threat of COVID-​19 (Barry and Lazar, 2020; Chorus et al, 2020; Settele and Shupe, 2020). The reason is because ‘economists and non-​economists alike are generally looking for choices that will bring the highest amount of human well-​being, now and in the future. In this case, economists are questioning whether the extensive actions taken by governments to limit

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the spread of COVID-​19 are hurting the economy too much’ (Frolund, 2020). Similarly, discussions about doing research during the pandemic have not questioned the need for such research, but the trade-​offs in using different methodologies that ensure ethical and practical risks are mitigated or minimized. In much the same way that governments had to weigh up the effects of ‘re-​opening’ economies and thus put some members of the public at risk, so researchers and research institutes have had to weigh up the effect of putting researchers and research participants at risk and whether ‘it is permissible to expose fully informed volunteers to a comparable level of risk in the context of promising research into the virus’ (Chappell and Singer, 2020, p 1). What would normally seem unthinkable in terms of research ethics, which aims above all to ensure the protection of research participants and individual researchers, are suddenly considered possibilities for advancing the global cause against the pandemic. ‘Restrictions on promising research (beyond the basic requirement of informed consent, confirmed via ethics committee approval) could easily prove counterproductive. The overriding aim must be to avoid a potentially catastrophic toll’ (Chappell and Singer, 2020, p 2). How then does one think about research ethics during this complex and fast-​changing time? One way to assess the landscape is to use philosophical positions to ground research ethics. Delanty (2020, p 2) argues that ‘while the pandemic raises fundamental philosophical questions concerning the political and ethical responsibility of the state, the way we look at these questions is very much influenced by philosophical positions themselves, since in many cases philosophical ideas have shaped the politics of the pandemic’. Since all research is political, there is significant advantage of using philosophical frames to assess the impact of research and the place of ethics during a crisis. This chapter presents two philosophies to understand the way in which research ethics were approached during the COVID-​19 crisis. The first is deontology and the second is utilitarianism. These have been used because they mirror the kinds of frameworks that were prevalent in global and public health debates. They also reflect the divide between morality

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and pragmatics. A deontological approach to research ethics highlights the moral obligation of researchers and asks researchers to put themselves in the role of participants, regarding the worth of participants as thinking beings. This philosophy assumes a ‘set of rules’ that researchers are able to adhere to in order to ensure their research is of ethical standards. For example, Public Health COVID-​ 19 argues that: Research on Covid-​ 19 should be rapidly implemented, of high ethical and scientific standard, coordinated also on an international level, and published open access. It should support, not impede public health and clinical responses. Support and funding should be secured so that valid knowledge becomes quickly available. Data should be routinely collected that can help to assess the equity of interventions, care and public health measures ideally in real time but also retrospectively (Public Health COVID-​19,  2020).

This strong recommendation promotes an assumed normative perspective where what ‘should’ be done is what ‘can’ be done. The difficulty with this kind of assertion, is that the complexity and difficulty of the context further blurs the lines between ‘should’ and ‘can’, it blurs the lines between normative ethics and practical research ethics, and it blurs the lines between what is required immediately and what is best in the long-​term. Unfortunately, there is limited research regarding this framework in relation to social science research and COVID-​ 19. Much of the writing on ethics during this pandemic has focused largely on public health and clinical research ethics. While there are many resources for researchers underpinned by a range of philosophical frameworks (see Powers, 1998; Rhodes, 2005; Macfarlane, 2009; National Academies of Sciences, 2017), they do not consider the unique context in which the world finds itself. Indeed, ‘in times of pandemics, ethical accountability is more important, not less. Understanding and handling of ethical problems require grounding in ethical theory and decision models, in combination with relevant facts from medicine,

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public health, law, economics, politics, etc.’ (Public Health COVID-​19, 2020). However, the social and human sciences, and notably philosophy, are missing as key research fields for understanding the human impact of the pandemic and the ethical considerations of doing research in these fields. The second philosophy being examined here is utilitarianism, which prioritizes the notion of greater good over individual moral and ethical norms. Macfarlane (2009, p 17) argues ‘essentially, utilitarianism is concerned to ensure that the result of a moral act produces the most utility (to maximize happiness or minimize misery) for all persons affected by an action’. This is a useful framework to examine research ethics during the crisis because of the tension that the context has brought forward between absolute and relative standards, and the tension between individual values and promoting the greater good. It is clear that early in the pandemic, the lack of information ‘prompted experts and political leaders to concentrate on attempts to maximize the health and wellbeing of citizens, often at the expense of civil rights and liberties’ (Rydenfelt, 2020, p 1). Hence lockdown in many countries to ensure the virus spread was minimized. However, as discussed previously, this mindset began to change as an understanding of the ‘greater good’ meant also thinking beyond public health to long-​term economic impact. A utilitarian argument would highlight the interests of those who are deemed to have a stronger future quality of life. Or, in the pandemic, ‘opening’ of society to ensure the economy does not collapse for the greater good of future generations, even if that means adverse consequences for some individuals. In the context of social research ethics, ‘from a utilitarian perspective, the research might be considered as ‘justified’ on the basis of the potential benefits it promises to bring for society as a whole’ (Macfarlane, 2009, p 29). During the pandemic, for example, the undertaking of research might require new ontologies and new methods of consent. ‘We agree that participants’ rights must not be violated but suggest that participants’ “interests” must be understood broadly to include any altruistic interest they may have in helping society to fight the pandemic’ (Chappell and Singer, 2020, p 2). In a context where research ethics committees, data protection

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measures and informed consent are pushed to the limits by the pandemic, it might be useful to consider a utilitarian approach to research ethics.

Conclusion

What emerged from the literature analysed was a strong indication of the tensions between individual rights and responsibilities and collective wellbeing. What we garner from this literature review is the difficulty of prioritizing research ethics during a global pandemic during which lives are at risk and research is not optional. Instead, what is required is adaptability and the ability to be nimble with decisions. What was clearly missing from literature, to support those decisions, is a stronger theoretical grounding for research ethics. If researchers are able to use either deontology, utilitarianism or another philosophical framework, then they would be better able to understand their approach to research ethics and ground their decisions on more than pragmatics. In terms of limitations, the literature review was hampered by access to academic literature that was not open access. This was not a systematic literature review, but an explorative study of the main themes and trends in academic literature during the pandemic. In addition, this exploration was conducted in the midst of the context that it is trying to understand. As such, the full implications for research ethics are unlikely to become clear until we are able to examine the context once COVID-​19 has been overcome.

References Barry, C. and Lazar, S. (2020) ‘Justifying Lockdown’. Ethics & International Affairs, Carnegie Council. Available from:  https://​ philpapers.org/​archive/​BARJL-​2.pdf [accessed July  2020] CFA Institute (2020) ‘Is the coronavirus rocking the foundations of capital markets?’ Available from:  https://​www.cfainstitute.org/​-​/​ media/​documents/​survey/​cfa-​coronavirus-​ec-​r eport-​2020.ashx [accessed 17 July 2020]

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Chappell, R.Y. and Singer, P. (2020) ‘Pandemic ethics:  the case for risky research’,  Research Ethics, 16(3–​4):  1–​8. DOI:  10.1177/​ 1747016120931920 [accessed 11 July 2020] Chorus, C., Sandorf, E.D. and Mouter, N. (2020) ‘Diabolic dilemmas of COVID-​19:  An empirical study into Dutch society’s trade-​offs between health impacts and other effects of the lockdown’, MPRA Paper No. 100575. Available from: https://​mpra.ub.uni-​muenchen. de/​100575/​1/​MPRA_​paper_​100575.pdf [accessed 22 June  2020] Delanty, G. (2020) ‘Six political philosophies in search of a virus:  Critical perspectives on the coronavirus pandemic’,  LEQS Paper No. 156, May 2020. Available from: https://​www.lse.ac.uk/​ european-​institute/​Assets/​Documents/​LEQS-​Discussion-​Papers/​ LEQSPaper156.pdf [accessed 11 July 2020] Favero, C., Ichino, A. and Rustichini, A. (2020) ‘Restarting the economy while saving lives under COVID-​19’. Available from: https://​ papers.ssrn.com/​sol3/​papers.cfm?abstract_​id=3580626 [accessed 14 June 2020] Friedman, G. (2020) ‘The coronavirus crisis and geopolitical impact’, Horizons:  Journal of International Relations and Sustainable Development, 16:  24–​ 29. doi:10.2307/​ 48573746. Available from:  https://​www.jstor.org/​stable/​48573746 [accessed 9 July 2020] Frolund, C.W. (2020) ‘Yes, there are tradeoffs between disease prevention and economic destruction’, Foundation for Economic Education. Available from:  https://​fee.org/​articles/​yes-​there-​are-​tradeoffs-​ between-​disease-​prevention-​and-​economic-​destruction/​ [accessed 1 July 2020] Gans, J. (2020) Economics in the age of COVID-​ 19. Cambridge, MA: MIT Press. Katsikas, D. (2020) ‘COVID-​19: EMU’s new fiscal challenge’, Hellenic Foundation for European & Foreign Policy, Policy Brief No. 108/​ 2020, March 2020. Macfarlane, B. (2009) Researching with integrity: The ethics of academic enquiry. New York, NY: Routledge. Haward, M.F., Janvier, A., Moore, G.P., Laventhal, N., Fry, J.T. and Lantos, J. (2020) ‘Should Extremely Premature Babies Get Ventilators During the COVID-​ 19 Crisis?’,  The American Journal of Bioethics, 20(7):  37–​ 43, DOI:  10.1080/​ 15265161.2020.1764134. Available from:  https://​ doi. org/​10.1080/​15265161.2020.1764134 [accessed 11 July 2020] McKibbin, W. and Fernando, R. (2020) ‘The global macroeconomic impacts of COVID-​ 19:  Seven scenarios’, CEPR Press, Covid Economics, Issue 10, April 2020. Morillas, P. (2020) ‘Lessons from a global crisis: Coronavirus, the international order and the future of the EU’, CIDOB Policy Brief, Notes Internationals 231: April 2020. National Academies of Sciences, Engineering, and Medicine (2017) Fostering Integrity in Research. Washington, DC:  The National Academies Press. Available from:  https://​ doi.org/​ 10.17226/​ 21896 [accessed 17 July 2020]

Page, L. (2020) ‘The ethics of social choices and the role of economists in a pandemic’, Journal of Behavioral Economics for Policy, 4(S): 17-​22. Palma, M., Huseynov, S. and Nayga, R. (2020) ‘Health versus the economic amid COVID-​19:  What do people value more?’ Available from: https://​ssrn.com/​abstract=3601325 [accessed 17 July 2020] Peterson, O. and Thankom, A. (2020) ‘Spillover of COVID-​19: Impact on the global economy’, MPRA Paper No. 99850, April 2020. Powers, M. (1998) ‘Theories of justice in the context of research’, in Kahn, J.P., Mastroianni, A.C. and Sugarman, J. (eds) Beyond Consent:  Seeking Justice in Research, New York, NY:  Oxford University Press, pp 147–​165. Public Health COVID-​ 19 (2020) ‘Public health ethics and COVID-​ 19’, Working Group Ethics/​ AG Ethik. April 2020. Available from:  https://​www.researchgate.net/​publication/​ 340875089_​Public_​Health_​Ethics_​and_​Covid-​19_​The_​ethical_​ dimensions_​of_​public_​health_​decision-​making_​during_​a_​pandemic [accessed 17 July 2020] Rhodes, R. (2005) ‘Rethinking research ethics’, The American Journal of Bioethics, 5(1): 7–​28. Rydenfelt, H. (2020) ‘From justice to the good? Liberal utilitarianism, climate change and the coronavirus crisis’, Cambridge Quarterly of Healthcare Ethics, 2020(3): 1–​14. Settele, S. and Shupe, C. (2020) Lives or livelihoods? Perceived tradeoffs and public demand for non-​ pharmaceutical interventions. CEBI Working Paper Series. Working Paper 17/​20. Available from:  https://​www.econ.ku.dk/​cebi/​publikationer/​working-​ papers/​CEBI_​WP_​17-​20.pdf [accessed 17 July  2020] Singh, B., Singh, S. and Kaur, J. (2020) ‘Post-​coronavirus pandemic world order:  Can globalization regain its footprint? –​Analysis’. Available from:  https://​www.eurasiareview.com/​25032020-​post-​ coronavirus-​pandemic-​world-​order-​can-​globalization-​r egain-​its-​ footprint-​analysis/​[accessed 17 July 2020]

3. Acknowledging my PhD supervisors, Robyn Preston, Lynn Woodward, Unaisi Walu Nabobo Baba and Sarah Larkins, whose valuable ideas and guidance contributed to the completion of this chapter. 4.  Fijian and Tongan concept which has similar meanings with face-​ to-​face interviews and focus group discussions in both Fiji and Tonga research contexts.

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6 COVID-​19 research crisis management for a human research ethics research project in Fiji and Tonga Etivina Lovo3 Background

My research project “Integrating indigenous principles of human research ethics: The case of two Pacific island nations” was in progress when the COVID-​19 pandemic was declared in early 2020. It focuses on culturally appropriate and ethical human research in the Republic of the Fiji Islands (Fiji) and the Kingdom of Tonga (Tonga) in the South Pacific. Talanoa4, an informal talk between persons or among people to share stories, ideas and emotions (Vaioleti, 2016), which is a culturally embedded qualitative research method, was employed (Nabobo-​Baba, 2008; Fua, 2014; Fa’avae et al, 2016). COVID-​ 19 enforced a change from face-​ to-​ face talanoa to online talanoa, presenting research and cultural challenges that had to be resolved in order to continue the study. I, the principal investigator, am a Tongan woman and a long-​term resident and worker in Fiji. We drew on a critical ethnographic theoretical perspective (Madison, 2011) to guide the enquiry, while a case study (Yin, 2009) qualitative research design was employed to explore priorities for the development of Human Research Ethics (HRE) in Fiji and Tonga. Two case studies were being conducted in this research project considering the incorporation of iTaukei (indigenous Fijian) cultural beliefs and traditions into the governance mechanism of HRE in Fiji. The second case study covers similar content, but in Tonga.

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The ethno-​geographic divisions of the Pacific Islands are Melanesia, Polynesia and Micronesia. Fiji is in Melanesia. However, Fiji’s population is multicultural (Mohamed et al, 2018; Tagicakiverata and Nilan, 2018) and some Fijians have Polynesian ancestry (Foster and West, 2016). The majority of the Fijian population are iTaukei. The iTaukei practices are strongly guided by indigenous cultural beliefs which are consolidated into the holistic concept of Vanua. Elements of Vanua include relationships amongst people, their physical environment, lotu (religious beliefs), respect of ancestors and customary laws and mana, the power that derives from these relationships. Vanua integrates these relationships as one body (Ravuvu, 1987; Long, 2017), foregrounding the virtue of selflessness. Other important characteristics or virtues include veidokai (mutual respect), duavata (solidarity), vakarokoroko (respect), dauvosota (tolerance) and veinanumi (being considerate). An iTaukei person’s conduct should be guided by the above characteristics and also acts of loloma (love and compassion), veivuke (help) and talairawarawa (obedience) among others (iTaukei Institute of Language and Culture (nd)). Until now, these concepts have been inadequately reflected in Fiji HRE procedures. Tonga is a Polynesian Kingdom. The Monarch is the head of the Government, followed by nobles (hou’eiki), their spokespersons (matapule) and, at the bottom of the hierarchy, the commoners (Benguigui, 2011). Strong Christian belief (lotu) and famili or family are central in Tongan people’s lives, hence these principles underpin HRE. Fa Kavei Koula, or the Four Golden Core Cultural Values framework, guides the lives of Tongans: (i) fefaka’apa’apa’aki (mutual respect), (ii) feveitokai’aki (sharing, cooperating and fulfilment of mutual obligations), (iii) lototoo (humility and generosity) and (iv) tauhi va (loyalty and commitment) (The Kingdom of Tonga, 2014; Ofanoa et al, 2020). The Fa Kavei Koula framework underpins HRE processes considered culturally appropriate in Tonga. Pre-​COVID-​19, the data collection for the Fiji HRE case study began with direct and indirect observations and face-​to-​ face talanoa. I arranged data collection in Fiji and completed fifteen talanoa sessions. I had not begun data collection in

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Tonga, but originally planned travel to Tonga to conduct the next phase of data collection. Once the pandemic was declared, travel plans to Tonga were suspended, however data collection needed to commence in order to meet the timeline of the research project. The dilemma was how to balance pragmatic considerations about timeliness, while attending to cultural correctness and commitments, traditional ethical concerns about language, informed consent, privacy and confidentiality in the online environment. I was also quite aware of the intricacies of Tongan cultural expectations in face-​to-​face situations. Before COVID-​19, I planned to employ a Tongan spokesperson to help me conduct the necessary cultural activities because I felt that I could not meet the required cultural standards unaided. I also ensured I owned appropriate attire for these occasions; puletaha –​dresses with matching long skirts –​to be worn with a mat (ta’ovala) wrapped and tied around the waist with a fine rope made of coconut fibre. All these preparations were stalled. It was vital to acknowledge the Tongan cultural expectations, but modify these in accordance with COVID-​19 social distancing policies. Qualitative online talanoa using English, Fijian (Nabobo-​ Baba, 2008) and Tongan (Fua, 2014) languages seemed to be the only possible method of data collection during the pandemic. I had concerns about how well I would be able to observe the cultural protocols, especially for hou’eiki (Tongan high chiefs) participants. However, I could not exclude these participants because of their powerful positions as gatekeepers of research. I had no practical experience of how a virtual talanoa with a high chief could be conducted while observing the most culturally appropriate methods. The appropriate Tongan attire was still required when conducting talanoa via Zoom. This new online data collection plan is being implemented in order to complete the Fiji data collection and then the Tonga data collection.

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Difficulties encountered Cultural expectations and language challenges

Tongan research policy states that it is beneficial if researchers can speak the Tongan language fluently, be competent in the use of appropriate and respectful language, be aware of the Tongan culture and they must know how to behave appropriately in a Tongan research setting (Tonga Ministry of Education, 2014). As a Tongan woman, I have an in-​depth knowledge of the expectations of the Tongan research policy. The Tongan language is arranged in three tiers. The first tier includes vocabularies used only for the King. The second tier, the lea faka’ei’eiki language, includes vocabularies used for the hou’eiki or nobles and some religious leaders like Catholic priests and nuns (Besnier, 2009). Although I know many of the lea faka’ei’eiki vocabularies, I lack confidence in delivering a formal speech using lea faka’ei’eiki. In Tonga specific persons are selected, trained and then given the roles of presenting speeches to the hou’eiki using the lea faka’ei’eiki language. The last tier includes vocabularies in the Tongan language used by the rest of the Tongan population generally referred to as the “commoners” (Besnier, 2009). This Tongan commoners’ language is my mother tongue, which I speak, read and write fluently. Many commoners like me, do not have competency in the lea faka’ei’eiki, especially in presenting a formal speech. The research project planned to explore the legal and policy environment of HRE in Tonga. A hou’eiki (high chief) and politician was identified as a prospective participant with this knowledge. He was invited to participate, and he accepted the talanoa invitation to be conducted via Zoom. To be most culturally appropriate, this talanoa session should be conducted in the lea faka’ei’eiki (Philips, 2010) language for the hou’eiki. In a non-​ COVID-​ 19 research environment in Tonga, the researcher would appoint a matapule (spokesperson) or cultural broker to conduct the communication in the lea faka’ei’eiki. The spokesperson should have high level of knowledge of the Tongan languages and cultural protocols and be able to represent the researcher

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and the research team to high ranking and noble research participants. Before the talanoa session begins, a formal speech, fakataputapu, is delivered by the spokesperson (Haugen, 2012). Fakataputapu is a speech to welcome the high chief and address him by his formal title and designation. The fakataputapu speech pays respect to the high chief, addresses something that is sacred and forbidden and requests a conversation. Part of the speech is an apology, asking that the researcher is forgiven in advance if he or she is unable to meet the expected Tongan cultural standards of communication with a hou’eiki participant (Haugen, 2012). I was contemplating organizing and implementing this process, but was doubtful whether a matapule would allow this formal presentation with me on Zoom so I did not pursue this plan. I delivered the fakataputapu speech in the best lea faka’ei’eiki language that I know. I had to ask the high chief for permission to converse with him, to pardon me for my language flaws and any of my actions that were not up to his expectations and the accepted cultural standards. I also asked for permission that I use both Tongan and English languages to express myself in the talanoa to maximize his understanding of the research under discussion. This was an appropriate way to cover up my embarrassment due to my lack of skills in practising the lea faka’ei’eiki. The standard of my attempt in conducting this fakataputapu speech would have been rated very low by Tongan standards. I felt embarrassed about my shortfalls, however, COVID-​ 19 social distancing policies provided a rationale for pardoning my shortfalls. Tongan people refer to this pardoning concept as hufanga. However, the high chief accepted my feeble attempt at speaking the lea faka’ei’eiki language and delivering the speech. The talanoa went well in a mix of English, Tongan lea faka’ei’eiki and Tongan commoners’ languages. He shared his knowledge of the Tongan legal and policy environment of HRE with me. In the end, I delivered a speech of fakamalo loto hounga (speech of thanks) extending my sincere gratitude to him for sharing his knowledge with me and giving his precious time to talanoa with me.

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The Tongan ethical value of Feveitokai’aki or reciprocity in research

It is an ethical requirement that researchers uphold the principle of reciprocity while researching in both Fiji and Tonga. A Tongan person living in Tonga must be recruited as a local counterpart (Tonga Ministry of Health, 2014), a requirement of the Tonga Human Research Ethics Committee to build local research skills and knowledge. This enacts the bioethical principle of beneficence in human research (Beauchamp and Childress, 2001). This is part of the benefits that my research project provides for Tonga. Although I am Tongan, I do not live in Tonga, so I appointed Mele (pseudonym) as the Tongan local counterpart in this project because she is a Tongan living in Tonga. Tonga closed its borders but has not had any positive COVID-​19 cases as of late July 2020. Mele was able to visit participants face-​to-​face in Tonga to facilitate Zoom talanoa sessions with me in Fiji. One participant, seeing Mele for the first time, expressed her happiness to meet her., telling Mele that they are closely related through Mele’s father’s side of the family, but they had never met prior to the data collection. Mele was also thrilled to have met this participant for the first time. This participant has held very high-​profile positions in Tonga and in the Pacific Region. This participant gave Mele gifts, which she was culturally expected to accept as a relative. Mele did not expect this gift and was unprepared to reciprocate a blood relative’s gift with a small return gift while facilitating the research. This act of gifting is consistent with the Tongan principle of feveitokai’aki (Fua, 2014; Ofanoa et al, 2020) or reciprocity. It is also about building and maintaining relationships or tauhivā (Ofanoa et al, 2020). Tauhivā is one of Tonga’s pillars of cultural values (Ofanoa et al, 2020). Gift giving to participants for tauhivā is an accepted research practice and norm in Tonga and other Pacific Island countries like Fiji (Nabobo-​Baba, 2008). However, the Fiji National University (FNU), where I work and which partially funded the Tonga research, does not cover gifts as allowable research costs. I was very happy to contribute personal funds

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so Mele could buy a small gift in order to strengthen the tauhivā with her relative who is a research participant.

Administrative consideration

This research required a research permit from the Prime Minister’s office in Tonga. An application was already sent to them prior to the COVID-​ 19 lockdown. However, COVID-​ 19 meant there was a need to adapt the data collection method and to inform the Prime Minister’s office of the changes in respect of social distancing policies. The Tonga Human Research Ethics Committee was also informed. A revised application was completed and sent to the Tonga Prime Minister’s office. These applications seemed burdensome, but the result was heartwarming. The Tonga Government demonstrated awareness of the importance of the research and was very supportive, despite COVID-​19. The result was a beautiful letter from the Prime Minister’s office with the Tongan Coat of Arms on the letterhead in full colour, granting approval and copied to all Chief Executive Officers of Government Ministries. This letter provided an official key to open doors for the research in Tonga. The relevant institutional ethics committees also had to be informed about the changes to the research process before the research process in Tonga could begin. The lockdown enhanced opportunities to recruit research participants who might otherwise have been unavailable due to frequent travel to represent Tonga internationally –​it would have been very difficult to arrange a Zoom meeting with them otherwise.

Conclusion

My responses to the impact of COVID-​19 on research had to consider the unique cultural dimensions of researching in Tonga. Appropriate cultural behaviour and language competency are important in research, whether conducted virtually or face to face. Initially, balancing pragmatic aspects of the research project with attempting to achieve cultural

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and ethical correctness seemed difficult and complicated, but cultural adaptation is possible and helpful. Seeking pardon and persevering in research are supported by indigenous values of feveitokai’aki in Tongans and dauvosota in iTaukei Fijians, which enable mutually supportive behaviours towards one another while researching during difficult times.

References Beauchamp, T.L. and Childress, J.F. (2001) Principles of Biomedical Ethics, New York, NY: Oxford University Press. Benguigui, G. (2011) ‘Tonga in turmoil’, The Journal of the Polynesian Society, 120(4), 349–​367. Available from:  http://​www.jstor.org/​ stable/​41705893 [accessed 12 July 2020] Besnier, N., (2009) ‘Modernity, cosmopolitanism and the emergence of middle classes in Tonga’, The Contemporary Pacific, 21(2): 215–​262. DOI: http://​dx.doi.org.elibrary.jcu.edu.au/​10.1353/​cp.0.0066 Fa’avae, D., Jones, A., and Manu’atu, L. (2016) ‘Talanoa’i ‘A e Talanoa—​ Talking about Talanoa:  Some dilemmas of a novice researcher’, AlterNative:  An International Journal of Indigenous Peoples, 1: 138–​150. Foster, S. and West, F.J. (2016) ‘Pacific Islands’ [Online], Encyclopædia Britannica, inc. Available from:  https://​ www.britannica.com/​ place/​Pacific-​Islands [accessed 12 July 2020] Fua, S.U.J. (2014) ‘Kakala research framework: A garland in celebration of a decade of rethinking education’, in Of Waves, Winds & Wonderful Things: A Decade of Rethinking Pacific Education, Suva, Fiji: University of the South Pacific Press, p 59. Haugen, J. D. (2012) ‘Svenja Völkel, Social structure, space and possession in Tongan culture and language’, Language in Society, 41(2): 267–​270. iTaukei Institute of Language and Culture, Indigenous iTaukei Research, Defining Research Locally (nd) Long, M. (2017) ‘Vanua in the anthropocene: relationality and sea level rise in Fiji’, Symplokē, 26: 51–​70. Madison, D.S. (2011) ‘Critical ethnography: Method, ethics and performance’ (2nd edn), London: Sage Publications. Mohamed, Y., Durrant, K., Huggett, C., Davis, J., Macintyre, A., Menu, S., Wilson, J.N., Ramosaea, M., Sami, M. and Barrington, D.J. (2018) ‘A qualitative exploration of menstruation-​ related restrictive practices in Fiji, Solomon Islands and Papua New Guinea’, PloS one, 13, e0208224. Nabobo-​ Baba, U. (2008) ‘Decolonising framings in Pacific research: Indigenous Fijian Vanua research framework as an organic response’, Alternative, 4: 140–​154. Ofanoa, M., Paynter, J. and Buetow, S. (2020) ‘‘O’ofaki:  A health promotion and community development concept to bring Pasifika people together’, Health Promotion International, pp 1–​5: Available

from:  https://​doi.org/​10.1093/​heapro/​daaa025 [accessed 19 August 2020] Philips, S. U. (2010), ‘Semantic and interactional indirectness in Tongan lexical honorification’, Journal of Pragmatics, 42(2), 317–​ 336. Available from:  https://​doi.org/​10.1016/​j.pragma.2009.06.005 [accessed 20 August 2020] Ravuvu, A.D. (1987) ‘The Fijian Ethos’, Institute of Pacific Studies, University of the South Pacific, Suva. Tagicakiverata, I.W. and Nilan, P. (2018) ‘Veivosaki-​yaga:  A culturally appropriate Indigenous research method in Fiji’, International Journal of Qualitative Studies in Education, 31: 545–​556. The Kingdom of Tonga, (2014) ‘Culture, what makes Tonga different’, Enjoy Tonga [Online] 6 August. Available from:  http://​www.tongaholiday.com/​things-​to-​do/​culture/​ [accessed 19 August  2020] Tonga Ministry of Education (2014) ‘Research and ethics policy’, [Unpublished, Available on request]. Tonga Ministry of Health (2014) ‘Operational guidelines for the National Health Ethics and Research Committee’, [Unpublished]. Vaioleti, T. M. (2016) ‘Talanoa research methodology:  A developing position on Pacific research’, Waikato Journal of Education, 12(1): 191. Yin, R.K. (2009) Case study research: Design and methods (4th edn, Vol. 5), Thousand Oaks, CA: SAGE Publications Inc.

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7 Forced displacement of migrants from countries of origin and their transit migration through Mexico to the US Nancy Rios-​Contreras Introduction

Forced migration stemming from state-​sanctioned violence, international intervention, crime and poverty in Latin American countries of origin contributes to individual, group or mass exodus migratory movements towards the United States. Debates about the US–​Mexico border refer to the situation as a migration crisis, but it is more specific to consider the phenomenon of migration control as a social disaster with crisis manifestations. Migration refers to the process of being in any stage of a migration route, including the place of origin, transit or the final destination. Migrants, therefore, are individuals in movement including asylum seekers, internally displaced persons, returnees, deportees and immigrants who may already be in the process of settling in a destination country. Starting in January 2019, the author began conducting qualitative research near the US–​Mexico border, and even though this research is ongoing, the 2020 intersection of COVID-​19 raises some questions about the ethical nature of conducting fieldwork during a disaster. To consider ethics in methodology it is necessary to recognize the rising political attention to the southern US border, the call for racial justice by Black Lives Matter protests, and the detrimental impact of the pandemic as social disasters. Disasters are diverse and social disasters include “politically and socially precipitated

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catastrophes…when people are targeted due to some aspect of their social identities and suffer oppression, and persecution, either at the hands of the state or through institutionalized social practices, such as racism” (Miller and Wang, 2018, p 40). Since research is often conducted after a disaster, there is a gap in the literature regarding real time-​disaster fieldwork (Hu, 2015). There are also limited comprehensive guidelines for conducting disaster research because they are context-​and time-​specific (Mezinska et al, 2016). This chapter explores ethical considerations for conducting migration fieldwork during concurrent disasters.

Background

Contemporary immigration policy changes bring attention to concerns with transit and irregular undocumented migration. In February 2016 the Obama administration implemented a metering policy to deter Haitian migration at the southern US–​Mexico border by limiting the number of asylum seekers entering the US per day, and the Trump administration continues to require asylum seekers to add their name to a waitlist. From May to July 2018, the Trump administration implemented a zero-​tolerance policy to justify the separation of children from migrant parents. In 2019 the implementation of the Migrant Protection Protocols, or the Remain in Mexico policy, required asylum applicants to wait in Mexico for a decision on their case. Despite the implementation of these policies, migrants continue to make the hazardous journey through Mexico to the US. Social disasters occur concurrently with other disasters because of the complexity of social interactions. The disaster of migration control is occurring simultaneously with the already ongoing historical impact of racial violence and more recent irruption of COVID-​19. Ethics in disaster research require scholars to conduct research before, during and after a disaster (Devisch et al, 2017). Before the disaster is the time for planning in anticipation of a disaster (Dodds and Nuehring, 1997). COVID-​19 complicates this process. Scholars studying crisis manifestations of concurrent disasters

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need to be particularly mindful of research ethics during fieldwork because of the potential impact disasters can have at community and individual levels.

The study

This qualitative study is located near the US–​Mexico border, primarily in Tijuana, Baja California, Mexico. The setting includes the US–​Mexico border and three migrant-​serving shelters in Mexico, one for women and children and two for families. One of the family shelters is run by the Mexican federal government, the other two shelters are community-​ based. This research is conducted through semi-​structured individual interviews, reflexive observations and photographs across three fieldwork trips from early 2019 and ongoing in 2020. By definition, migrants are mobile. Their mobility justifies the need for primary interview data collection when researcher and migrant meet. Individual interviews with one hundred migrants each lasted approximately thirty to sixty minutes. I also conducted five individual interviews with service provider staff, and reflexively observed the activities and interactions of potential migrants in public spaces. Photographs were taken of public spaces to capture the setting or the borderlands location of study, and to humanize migrants and document their lived experiences. The methodology requires being mindful of the presentation of migration in research and avoid contributing further to the terror of pornonecropolitics and migrant death (Varela Huerta, 2020).

Ethics before a disaster crisis

Ethical planning before a disaster requires reflexivity for researchers to be aware of their own cultural capacity (Chiumento et al, 2016). Reflexivity also includes being aware of the researcher’s vulnerability and being realistic about security concerns or risks they may face in the field (Hu, 2015; Mezinska et al, 2016). At this stage, researchers can

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participate in cultural competency training (Louis-​Charles et al, 2020). This research preparation takes time (Dodds and Nuehring, 1997; Donner and Diaz, 2018). The ultimate learning experience includes a visit to the research site to make connections with institutions and potential participants (Louis-​Charles et al, 2020). I visited Tijuana and crossed the border on foot to learn about the border conditions. Researchers need to continue learning about the target community by appropriate means such as walking the area, talking to community members and getting accommodation near the disaster site (Mukherji et al, 2014). The goal of a reflexive process is for researchers to identify how they can be helpful and make urgent calls of action through their scholarship (Dodds and Nuehring, 1997; Hu, 2015; Henderson and Liboiron, 2019). A call for action in transit migration research requires centring migrant lived experiences to bring awareness to the violent nature of border enforcement. Developing collaborations at potential disaster sites is more ethical than trying to build relationships under chaotic post-​ disaster conditions (Dodds and Nuehring, 1997). In the case of quick-​response research at a disaster site, extensive planning may not be possible because data gathering occurs with short notice (Kendra and Gregory, 2019). Local institutional collaborations can provide oversight of the study (Louis-​Charles et al, 2020). Foreign researchers need to recognize that researchers living close to research crisis sites have been addressing these concerns, which justifies the need to work collaboratively (Brun, 2009). During quick-​ response research, collaborations with local scholars and/​ or community members are encouraged. Engaging with community members provides researchers with the opportunity to receive their invaluable insider guidance about the disaster area (Sturdy Colls, 2015). Ideal collaborations will benefit from interdisciplinarity, cross-​cultural communication and co-​ethnic research teams (O’Mathúna, 2010; Mukherji et al, 2014). After a scholar is reflexive about their capacity to conduct research and develops an idea of local site collaborations, they can go through an ethical institutional review board (IRB)

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approval process to protect participants from potential ethical issues that might arise (Mukherji et al, 2014; Louis-​Charles et al, 2020). Ethics need to inform the methodology and require a process of compromise with institutions and local communities in disaster zones (Henderson and Liboiron, 2019). Recruitment needs to be inclusive by making sure any consent materials and data collection instruments are created and implemented in a culturally and linguistically appropriate manner (Dodds and Nuehring, 1997; Louis-​Charles et al, 2020). The exploitation of participants can lead to coercion, so participant recruitment and interactions should be fair and prioritize participants’ protection (O’Mathúna, 2010). A just and fair ethical research process must have a plan for participant compensation including monetary and/​ or nonmonetary options (Louis-​ Charles et al, 2020; O’Mathúna, 2010). Migrants in the author’s study received payment because it is hard to exchange gift cards or vouchers in the borderlands. Individuals most affected by disasters, such as migrants, are often the most difficult to recruit (Donner and Diaz, 2018). Before COVID-​ 19, in 2019 and into 2020, US–​ Mexico relations were already tense and escalating. When conducting fieldwork, I was not allowed to go inside the federal-​ run shelter, and I was threatened with deportation back to the US by Mexican federal representatives. Using my intersectional identities as a Latinx US student, I built trust with shelter gatekeepers in order to even have access to the space outside the shelter in the street since the area was highly policed.

Data collection during disaster crises

After a disaster, data collection documents potential impacts and community adaptations to the crisis event and raises questions about the implementation of ethics (Brun, 2009). The ethical IRB proposal approval often includes developing an informed consent form where participants can give consent in writing. In migration disaster-​ based research, verbal consent is more appropriate considering potential unintended consequences for migrants of a paper trail. In addition to obtaining verbal consent, researchers need to think about how

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participants culturally perceive forms in general, because it is possible to review the consent process without a form (Hu, 2015). Therefore, it is not only about the ethics in creating consent forms, but it is also about how those procedures are implemented in a research setting with participants. Ethical concerns exist in data collection because participants can include vulnerable groups and communities (Hu, 2015). Holistic studies interview both community members and organization-​affiliated individuals (Donner and Diaz, 2018). Participants might belong to groups with added vulnerability and participation in the study might be a process of suffering that retraumatizes them as they speak of disaster events (Proffitt Lavin et al, 2012). Service providers might also experience trauma from responding to disaster events and, for example, handling mass death (Sturdy Colls, 2015). Data collection procedures should minimize the potential for added participant stress (Dodds and Nuehring, 1997). Post-​conflict or post-​disaster mental health concerns can be addressed by both sharing and withholding information from participants (Chiumento et al, 2016). Voluntary ethical debriefings in disasters where participants have common experience can provide some closure to data collection for the participants (Devisch et al, 2017). During fieldwork in disaster and crisis sites, researchers have to make on-​the-​spot decisions requiring flexibility, patience and back-​up plans (Proffitt Lavin et al, 2012; Mukherji et al, 2014). Researchers can change their fieldwork techniques while still meeting their study’s requirements (Brun, 2009). For example, interviews can be conducted as conversations (Hu, 2015). When studying mobile populations, the site of data collection can change depending on where participants relocate or where they are displaced (Adams-​ Hutcheson, 2017). Researchers need to be aware of over-​using scarce resources and try to keep demands to a minimum (Donner and Diaz, 2018). When collaborating with a community-​ based organization, researchers should recognize their time is valuable because they must focus on providing services to those in need. An ethical practice in disaster settings is the recognition of when and how to finish data collection and

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leave the field, especially if the research is a burden on the community.

Ethics after leaving the disaster field

A decision influencing when researchers leave the field is the timeline of the study (Brun, 2009BIB-​002; Adams-​ Hutcheson, 2017). A long data collection period might mean participants leave the research site or have trouble recollecting information about the disaster (Donner and Diaz, 2018). An ethical dilemma, especially when the research is grounded in collaborations with local communities and organizations, is whether to leave the site or continue a relationship (Brun, 2009; Hu, 2015; Chiumento et al, 2016; Adams-​Hutcheson,  2017). After scholars leave the field, data analysis begins and what to do with the findings is another ethical decision. The dissemination of findings should be a transparent process (Chiumento et al, 2016). Findings need to be accessible and sharing those findings with local community members is just (Henderson and Liboiron, 2019; Louis-​ Charles et al, 2020). Participants give researchers their time, and the findings might be helpful for future planning, restoration or disaster preparedness. Other possibilities for giving back to the community include facilitating capacity building, training, policy advocacy, and creating ongoing collaborations (Hu, 2015). Most importantly, scholars need to consider the potential harm research findings can cause to communities in local disaster sites (Henderson and Liboiron, 2019).

COVID-​19 and ethical migration research

Concurrent social crises simultaneously perpetuate migration conflicts. COVID-​19 and the racial injustice towards Black men and women by institutional agencies on both sides of the border impacted migration and the author’s fieldwork. In 2020, migration as a disaster is exacerbated with the rise of COVID-​19 and the continued violence against racialized

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individuals. This period of historical significance brings up the ethical nature of conducting research during COVID-​19. Most disaster research is conducted after the disaster, but conducting research during a disaster, such as COVID-​19, is also possible (Brun, 2009). COVID-​19 influenced universities to implement travel and funding restrictions, the federal government partially closed borders and migrant shelters stopped enrollment. The author suspended data collection during the pandemic. Spreading the data collection over a period of time is a research strategy that can reduce stress and burnout in disaster fieldwork (Mukherji et al, 2014). Pausing research activities is an ethical methodological decision (Chiumento et al, 2016). Even though researchers halted data collection at a global scale, COVID-​19 did not deter the US deportation regime. I learned one of my study participants was placed at an immigration detention facility during this time of recommended quarantine and isolation, while other participants remain, waiting, in Mexico because the US drastically reduced the review and approval of asylum applications during the pandemic (Slack and Heyman, 2020). COVID-​19 pushed researchers to find opportunities for remote data collection and other creative methodologies. Engaging from a distance is an opportunity to revisit ethical review protocols and continue data collection (Brun, 2009). Most migrants have internet-​capable cellphones, but no or limited funding to pay for cellphone service, and remote locations have limited access to signal. Virtual fieldwork is not accessible. Data collection online is also not as rich as data collected in person. I am moving cross-​country to be closer to the US–​Mexico border, and to have access to research sites for when it is safe to interact with migrants since they reside in vulnerable conditions.

Conclusion

Migration control, racial injustice and COVID-​ 19 disproportionately impact migrants in transit and disrupt the research process. An important lesson from COVID-​19 is

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that the research planning process should include a thought-​ out backup plan (Dodds and Nuehring, 1997). A possible solution to blocked access to crisis/​ disaster communities is to take advantage of existing collaborations with local actors. Action research is possible in collaboration with organization partners (Hu, 2015). I have remained in contact with collaborators and gatekeepers through social media. Participatory action research can also open up opportunities for participants and partnering organizations to conduct research while the primary researcher has limited access because of university IRB COVID-​ 19 restrictions (Brun, 2009). Ethical considerations in migration research also include practising migrant-​ centred methods, conducting studies during intersecting crises and navigating transnational data collection with collaborators. Recognizing the impact of migration control and the concurrent crises near the border, scholars should be encouraged to call for action to bring attention to the impact of concurrent disasters on migrant populations and reject the requirement for political neutrality in the research process on ethical grounds.

References Adams-​ Hutcheson, G. (2017) ‘Mobilising research ethics:  Two examples from Aotearoa New Zealand’,  New Zealand Geographer, 73(2): 87–​96. Brun, C. (2009) ‘A geographers’ imperative? Research and action in the aftermath of disaster’, The Geographical Journal, 175(3): 196–​207. Chiumento, A.,  Khan, M.N., Rahman, A. and Frith, L. (2016) ‘Managing ethical challenges to mental health research in post-​ conflict settings’, Developing world bioethics, 16(1): 15–​28. Devisch, I., Vanheule, S., Deveugele, M., Nola, I., Civaner, M. and Pype, P. (2017) ‘Victims of disaster:  Can ethical debriefings be of help to care for their suffering?’,  Medicine, Health Care, and Philosophy, 20(2): 257–​267. Dodds, S.P.D. and Nuehring, E.P.D. (1997) ‘A primer for social work research on disaster’,  Journal of Social Service Research, 22(1–​2): 27–​56. Donner, W. and Diaz, W. (2018) ‘Methodological issues in disaster research’, in Rodríguez, H., Donner, W. and Trainor, J. (eds) Handbook of Disaster Research, (2nd edn), Cham, Switzerland: Springer, pp 289–​309.

Henderson, J. and Liboiron, M. (2019) ‘Compromise and action: Tactics for doing ethical research in disaster zones’, in Kendra, J., Knowles, S. and Wachtendorf, T. (eds) Disaster Research and the Second Environmental Crisis. Environmental Hazards, Cham, Switzerland: Springer, pp 295–​318. Hu, M. (2015) ‘Challenges of conducting disaster research: The case of the Sichuan earthquake’, Risk, Hazards & Crisis in Public Policy, 6(2): 164–​182. Kendra, J. and Gregory, S. (2019) ‘Ethics in disaster research:  A new declaration’, in Kendra, J., Knowles, S. and Wachtendorf, T. (eds) Disaster Research and the Second Environmental Crisis. Environmental Hazards, Cham, Switzerland: Springer, pp 319–​341. Louis-​Charles, H .M., Howard, R., Remy, L., Nibbs, F. and Turner, G. (2020) ‘Ethical considerations for postdisaster fieldwork and data collection in the Caribbean’,  American Behavioral Scientist: 64(8):1129–​1144. DOI: 10.1177/​0002764220938113. Mezinska, S., Kakuk, P., Mijaljica, G, Waligóra, M. and O’Mathúna, D. (2016) ‘Research in disaster settings: a systematic qualitative review of ethical guidelines’, BMC Medical Ethics, 17(1): 1–​11. Miller, J. and Wang, X. (2018) ‘When there are no therapists: a psychoeducational group for people who have experienced social disasters’, Smith College Studies in Social Work, 88(1): 39–​58. Mukherji, A., Ganapati, N.E. and Rahill, G. (2014) ‘Expecting the unexpected:  Field research in post-​ disaster settings’,  Natural Hazards: Journal of the International Society for the Prevention and Mitigation of Natural Hazards, 73(2): 805–​828. O’Mathúna, D.P. (2010) ‘Conducting research in the aftermath of disasters:  Ethical considerations’,  Journal of Evidence-​based Medicine, 3(2): 65–​75. Proffitt Lavin, R., Schemmel-​Rettenmeier, L. and Frommelt-​Kuhle, M. (2012) ‘Conducting research during disasters’,  Annual Review of Nursing Research, 30(1): 1–​19. Slack, J. and Heyman, J. (2020) ‘Asylum and mass detention at the U.S.–​Mexico border during COVID-​19’, Journal of Latin American Geography, 19(3): 334–​229. Sturdy Colls, C. (2015) ‘Ethical issues and project design’, in Sturdy Colls, C. Holocaust Archaeologies: Approaches and Future Directions, Cham, Switzerland: Springer, pp 87–​111. Varela Huerta, A. (2020) ‘Apuntes para un feminismo antirracista después de las caravanas de migrantes (Notes for an anti-​racist feminism after the migrant caravans)’, in Gago, V., Malo, M., Cavallero, L., Silvestre, H., Varela Huerta, A. Carrillo Vidal, A., Manzi Araneda, J., Hidalgo Cordero, K., Santillana Ortiz, A., and Valencia Castro, B. (eds) La Internacional Feminista: Luchas en los Territorios y contra el Neoliberalismo. Ciudad Autónoma de Buenos Aires: Tinta Limon, pp  75–​91.

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8 Transforming culturally relevant research amid a COVID-​19 pandemic Eboni Anderson, Daryl Traylor, Carolee Dodge Francis, Megan Murphy-​Belcaster, Melva Thompson-​Robinson, Johanna E. Andrews, Tristesse Burton, Kristina Ricker and Sutton King

COVID-​19-​related morbidity and mortality have disproportionately affected communities of colour across the United States. Originally dubbed the ‘great equalizer’, many individuals believed that COVID-​19 affected everyone equally (Gupta, 2020). However, COVID-​ 19 has exposed ethnic and racial differences in morbidity and mortality (Yaya et al, 2020). Early data showed that African Americans, Latinos and Native Americans were more likely to grow ill and die from COVID-​19 than White Americans (Bassett et al, 2020). As data continues to emerge, it is evident that communities of colour bear a disproportionate burden of COVID-​19. Thus, relevant COVID-​19 data must be viewed as a foundation for conducting health disparities research. Health disparities research identifies groups that receive inequitable access to care, treatment and resources (Chan et al, 2018). This research is necessary because it offers an in-​ depth understanding of the demographic framework (for example, race, ethnicity, gender, age, socioeconomic status, marital status and ability status) for addressing COVID-​ 19 (Chan et al, 2018). Zastrow and Kirst-​ Ashman (2010) posited that academic researchers should encompass cultural competence and cultural sensitivity when

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investigating the behaviour and social environment of specific groups. See (2007) suggested that Eurocentric research may generate a misunderstanding of the issues that communities of colour face in light of COVID-​19. Therefore, establishing multicultural and multidisciplinary research teams with an inherent understanding of health disparities is paramount to understanding communities of colour. Since the onset of the COVID-​ 19 global pandemic, academic researchers were forced to change approaches to research and building teams (Kupferschmidt, 2020). These rapid changes were driven by the infectivity of COVID-​19 and the need to socially distance and isolate. Fortunately, technology, such as Cisco WebEx, enabled a newly created diverse research team to work without geographical constraints to facilitate COVID-​19 research. The purpose of this chapter is to describe how a diverse research team worked together to conduct meaningful research regarding the impact of stress and coping in the age of COVID-​19. Colleagues from the University of Nevada, Las Vegas (UNLV) and the University of Wisconsin, Madison led the development of a social media-​ disseminated research project. Literature confirms that social media is a useful tool to conduct public health research (George et al, 2013), and this research team utilized available digital resources.

Embracing diversity and strengthening research

The 2015 National Science Foundation observed lower rates of academic appointments for African Americans, Native Americans, Hispanics and women (Beech et al, 2018). This NSF report highlights the lower rates of racial and ethnic minorities and females entering biomedical sciences, health professions and research careers (Beech et al, 2018). Similarly, a lack of underrepresented minorities (URMs) are associated with current academic research opportunities. According to Eliseo Perez-​ Stable, Director of the National Institute on Minority Health and Health Disparities, roughly seven per cent of National Institutes of Health R01 grants are awarded to African American or Latino primary investigators in the US

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(Frieden, 2018). Overall, a significant lack of Latino, African American or Native American participation in research careers exists (Frieden, 2018; Hudson, 2018). Underrepresented minorities are stigmatized and disproportionately face the same health disparities and chronic diseases that are at the forefront of national research. The intentional inclusion of underrepresented senior researchers, early-​career investigators and graduate students provides a scaffolding structure for collaboration, mentoring and research modalities and practice. However, the simple act of bringing a group of like-​ minded, skilled students and researchers together is not sufficient for an effective and productive research team (McEwan et al, 2017). Team members must be willing to work collaboratively in order to achieve their goals (Lepine et al, 2008). The evolution of this COVID-​19 research project began with a discussion between Dr Melva Thompson-​Robinson and Daryl Traylor, concerning the importance of resilience, depression and food insecurity in communities of colour amidst the COVID-​ 19 pandemic. Communities of colour were hypothesized to have greater mental health challenges and more significant service needs than other communities in the US. These challenges could potentially influence and lead to other health conditions. Based upon this initial conversation, Dr Thompson-​ Robinson took the first steps towards building a diverse team of African American, Native American and White women and men URM researchers. The team’s diversity is not only reflected in terms of expertise, race, gender, culture and ethnicity, but also in terms of geographic dispersion across the US. Culture affects the behaviours related to communities of colour and providers, as well as the orientation of URMs within research (Wilensky and Satcher, 2009). As the diverse research team began discussing COVID-​19 research, multiple cultural perspectives formed the framework for understanding, developing and disseminating research back into communities of colour. Dr Thompson-​ Robinson contacted Dr. Carolee Dodge Francis at the University of Wisconsin-​ Madison and two graduate students at University of Nevada, Las Vegas, Kristina

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Ricker and Johanna Andrews, to set up an initial meeting over Cisco WebEx. Dr Eboni Anderson, who is an early-​career investigator and Assistant Professor at A.T. Still University School of Osteopathic Medicine in Arizona, was also invited to this meeting. At the first meeting, a discussion about conducting a COVID-​19 research study, and the beginnings of a research plan, took shape. Megan Murphy-​ Belcaster, Sutton King, and Dr Tristesse Burton were also asked to join the research team. Self-​reflection of ones’ own community and health problems associated with COVID-​19 was evident and a constant concern among the research team. Building diverse research teams enables the promotion of diversity and equity in the scientific endeavour, and the training of the next generation of researchers. Diversity among research participants and researchers enhances the validity of the science being conducted (Medin and Lee, 2012). Scientific validity should consist of more than controls and replicability. Henrich, Heine and Norenzayan (2010) suggest that a correlation exists between White researchers and the populations that they choose to study. For example, research efforts focused only on White, middle-​class populations limits generalizability (Henrich et al, 2010). The authors note that cultures differ in fundamental aspects related to reasoning styles and conceptions of the self, which highlights cultural variations among populations. With this consideration in mind, the makeup of the research team reflects the ability to reset the trajectory of current research within communities of colour as the focal point, and not an outlier, of COVID-​19 research.

Diverse research mentoring matters

Estrada, Hernandez and Schultz (2018) found that mentoring positively impacts science/​ research identity and increases URM retention rates. Positive mentoring can assist in the development of work satisfaction, productivity, diversity and the retention of investigators (Kahn and Greenblatt, 2009) and interdisciplinary research. Unfortunately, intentional mentorship and knowledge transfer are usually less available

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for URMs involved with research (Beech et al, 2018). Finding mentoring and networking opportunities during these unprecedented times of COVID-​ 19 is even more challenging. However, supportively, senior faculty members, Drs Thompson-​ Robinson and Dodge Francis embraced alternative ways to conduct research and mentor graduate students and postdoctoral researchers. Early-​ career researchers frequently require networks of collaborators to establish an effective research program, which is regularly facilitated by mentors (Kahn and Greenblatt, 2009). However, at the onset of COVID-​ 19 restrictions, many human subjects and bench research projects were halted, and efficient communication between researchers became difficult. Students found it harder to find research projects and engage mentors. During the summer of COVID-​ 19, effective mentoring and research projects became an instant challenge nationwide. Collaborative teamwork promotes mutual understanding and respect among team members. Such teamwork may lead to more productive work and a greater likelihood of the team achieving its goals (Alpay and Littleton, 2001). The expertise, skills and networks that each team member brings to the research endeavour provide for greater insight into research strategies that target communities of colour. A key element of mentoring and collaboration was thoughtfully and meaningfully engaging all members of the team. Due to the diversity of skillsets, Drs Thompson-​ Robinson and Dodge Francis carefully assigned tasks that allowed each team member to utilize their skills and expertise, but also pushed them to reach beyond their comfort level. Sharing resources among team members allowed for greater research depth (Alpay and Littleton, 2001). Team members brought cultural knowledge and community contacts, which is essential when conducting research among various ethnic and racial groups across the US. Through an equitable exchange of ideas, each member of the team developed respect and trust in one another. Mutual support and mindfulness about the communities most affected by COVID-​19, even in the face of difficulties, heightened the commitment to the research.

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Mentors should remember that each mentee will have different needs, based on their stage of training. For example, postdoctoral researchers may need exposure to new opportunities so that they can continue to build upon and refine their research interests and skills. Importantly, mentors and mentees should mirror one another, that is, senior researchers of colour may be able to relate to the struggles of URMs and help them to navigate some of the structural and systemic roadblocks present in the academy. Finally, it is important for mentors to create a comfortable environment that allows their mentees to grow and to reach their full potential. Mindfulness of cultural values and expectations is essential to working with individuals from diverse backgrounds (Gelman, 2004). These values and expectations were also considered during the recruitment of study participants. From an Indigenous perspective, nurturing the development, support and resilience of Indigenous evaluators also requires knowledge and practices to be passed on in responsible and respectful ways. Kinship, being a good relative and with all things, is the traditional teaching that guides the interpersonal development and sustainable educational, professional and community pathways for Indigenous students. Researchers who do not attempt to understand the culture they are working with risk the possibility of distancing themselves from the community (Alvarez et al, 2006). The team placed careful emphasis on recruiting a diverse sample in a culturally appropriate manner. The work that has been done is reflective of cultural humility and sensitivity. These concepts have been used to build pathways into communities of colour. Flexibility, respecting individuality and fostering relationships have been recognized as integral parts of cultural sensitivity (Gelman, 2004). Subsequently, this ongoing interaction among team members with proficiency in cultural sensitivity fosters personal and professional growth among the team members.

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Utilizing digital technology within COVID-​19 research

In the wake of the COVID-​19 pandemic, the data collection process has become highly reliant on successfully navigating digital technologies. Global and national governments, academic institutions and public health researchers have expressed insights into collecting, analysing and sharing data via digital platforms (Gasser et al, 2020). This health disparities research team relied upon Cisco WebEx, email, text messaging and Google Drive to increase team communication and research efficiency. Cisco WebEx was utilized to hold weekly meetings. A useful aspect of Cisco WebEx was the ability to share screens and record sessions. A PowerPoint presentation was shared to discuss the results of the project, as well as manuscript-​ sharing so team members could suggest edits. Email and text messaging allowed near-​ real time communications between team members, particularly pertaining to time-​ sensitive issues. Finally, Google Drive allowed the team to easily store products in a central space and work on them together. Collaboration was critical to responding to grant opportunities, paper editing and deploying research tools in a timely manner. Web 2.0 refers to social networking sites, blogging, podcasting and streaming media tools (Cuff, 2014). The team’s use of Web 2.0 tools, specifically social media, combined with email networking and Cisco WebEx meetings, provided greater reach to the target research communities and respondents. These tools allowed the team’s research to go beyond just receiving information through the Web. The simultaneous ability to interact and create research content with each other was a key element to the success of creating and disseminating research. While social media is ubiquitous, its reach into American life has become even more pervasive during this time of COVID-​19 social distancing and isolation. Social networking via Internet sites/​listservs, blogging, Tweeting, podcasting and streaming media tools adds unique levels to interaction during a pandemic lockdown (Cuff, 2014). These digital technologies allowed the research team to disseminate

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the quantitative survey, chat with respondents via Web 2.0 platforms and yield greater public access. Using social media allowed for the recruitment of a diverse sample of participants from across the US. The Qualtrics platform was used to create and disseminate the research team’s online survey. The Transactional Model of Stress and Coping (TMSC) guided the development of the survey instrument. The survey instrument was comprised of five measures, which included questions assessing stressors related to COVID-​19, the Brief Encounter Psychosocial Instrument (BEPSI), the 10-​ item Connor-​ Davidson Resilience Scale (CD-​RISC-​10), the Ways of Coping Questionnaire (WCQ), and the Center for Epidemiologic Studies Depression Scale (CES-​D). Based on respondent feedback regarding dual time references (before and since COVID-​19) related to BEPSI, CD-​ RISC-​ 10 and CES-​ D measures, these questions were modified along with an updated social media narrative. To date, a total of 842 surveys have been completed. The accomplishment of survey design, dissemination and results, publications, two conference abstracts and grant proposals took place from April to July 2020. The research team has a greater array of choices regarding the utilization of visual, auditory, graphic and digital tools to circulate result findings (Cuff, 2014), allowing for meaningful dissemination of study results (Ahmad and Murad, 2020).

Discussion and conclusion

Collaborative teams are an intuitively necessary and desirable part of the research endeavour. Diverse perspectives and expertise augment the productivity and success of a research team. Truly effective collaborative teams, grounded in good mentorship, can achieve research outcomes beyond those of individuals working independently. Mentors that reflect the cultural background of team members can create a nurturing environment that fosters growth in the many facets of a research project. Collaborative teams should consist of individuals committed to the goals of the project. Digital technologies are indispensable for communicating with team

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members across the US and conducting research amidst the COVID-​19 pandemic. Finally, mentors and mentees should understand that diversity in research offers challenges and opportunities. However, engaging with diverse perspectives allows for the creation of effective mentoring relationships and increases the overall productivity and cultural appropriateness of research.

References Ahmad, A.R. and Murad, H.R. (2020) ‘The impact of social media on panic during the COVID-​ 19 pandemic in Iraqi Kurdistan: Online questionnaire study’, Journal of Medical Internet Research,  22(5):  e19556 [online]. Available from:  https://​ www. jmir.org/​2020/​5/​e19556 [accessed 15 July  2020] Alpay, L.L. and Littleton, K.S. (2001) ‘Contexts for collaboration in healthcare education’, Health Informatics Journal, 7: 121–​126. Alvarez, R.A., Vasquez, E., Mayorga, C.C., Feaster, D.J. and Mitrani, V.B. (2006) ‘Increasing minority research participation through community organization outreach’,  Western Journal of Nursing Research, 28(5): 541–​563. Bassett, M.T., Chen, J.T. and Krieger, N. (2020) ‘The unequal toll of COVID-​19 mortality by age in the United States: Quantifying racial/​ ethnic disparities’, Harvard Center for Population and Development Studies Working Paper Series,  19(3) [online] 15 June, Available from:  https://​cdn1.sph.harvard.edu/​wp-​content/​uploads/​sites/​ 1266/​2020/​06/​20_​Bassett-​Chen-​ Krieger_​COVID-​19_​plus_​age_​ working-​paper_​0612_​Vol-​19_​No-​3_​with-​cover.pdf [accessed 25 July 2020] Beech, B.M., Bruce, M.A., Thorpe, Jr, R.J., Heitman, E., Griffith, D.M. and Norris, K.C. (2018) ‘Theory-​informed research training and mentoring of underrepresented early-​career faculty at teaching-​ intensive institutions:  The obesity health disparities PRIDE program’, Ethnicity & Disease, 28(2): 115–​122. Chan, L., McGarey, P. and Sclafani, J.A. (2018) ‘Using large data sets for population-​ based health research’, in Gallin, J.I., Ognibene, F.P. and Johnson, L.L. (eds)  Principles and Practice of Clinical Research, London: Elsevier, pp 293–​302. Cuff, E. (2014) ‘The effect and importance of technology in the research process’, Journal of Educational Technology Systems, 43(1): 75–​97. Estrada, M., Hernandez, P.R. and Schultz, P.W. (2018) ‘A longitudinal study of how quality mentorship and research experience integrate underrepresented minorities into STEM careers’, CBE—​Life Sciences Education, 17(1): ar9. Frieden, J. (2018)  ’Minorities not visible in clinical trials, medical schools’, MedpageToday, [online] 26 March,Available from: https://​

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www.medpagetoday.com/​meetingcoverage/​additionalmeetings/​ 71987 [accessed 15 July 2020] Gasser, U., Ienca, M., Scheibner, J., Sleigh, J. and Vayena, E. (2020) ‘Digital tools against COVID-​19: Taxonomy, ethical challenges, and navigation aid’, The Lancet Digital Health, 2(8): E425-​E434. George, D.R., Rovniak, L.S. and Kraschnewski, J.L. (2013) ‘Dangers and opportunities for social media in medicine’, Clinical Obstetrics and Gynecology, 56(3): 453–​462. Gelman, C.R. (2004) ‘Empirically-​ based principles for culturally competent practice with Latinos’,  Journal of Ethnic and Cultural Diversity in Social Work, 13(1): 83–​108. Gupta, S. (2020)  ’Why African Americans may be especially vulnerable to COVID-​ 19’, ScienceNews, [online] 10 April,  Available from:  https://​ www.sciencenews. org/​ a rticle/​ c oronavirus- ​ w hy- ​ a frican- ​ a mericans-​ v ulnerable-​ covid-​19-​health-​race [accessed 15 July  2020] Henrich, J., Heine, S.J. and Norenzayan, A. (2010) ‘Most people are not WEIRD’, Nature, 466(7302): 29–​29. Hudson, C. (2018)  ’The importance of diversity in research’, Rural Health Quarterly, [online] 20 June,  Available from:  http://​ruralhealthquarterly.com/​home/​2018/​06/​20/​diversity-​in-​r esearch [accessed 15 July 2020] Kahn, J.L. and Greenblatt, R.M. (2009) ‘Mentoring early-​career scientists for HIV research careers’,  American Journal of Public Health, 99(Suppl 1): S37-​S42. Kupferschmidt, K. (2020)  ’A completely new culture of doing research’,  ScienceMag.org, [online] 26 February, Available from:  https://​www.sciencemag.org/​news/​2020/​02/​completely-​ new-​culture-​doing-​r esearch-​coronavirus-​outbreak-​changes-​how-​ scientists [accessed 15 July 2020] Lepine, J.A., Piccolo, R.F., Jackson, C.L., Mathieu, J.E., and Saul, J.R. (2008) ‘A meta-​analysis of teamwork processes:  Tests of a multidimensional model and relationships with team effectiveness criteria’, Personal Psychology, 61(2): 273–​307. McEwan, D., Ruissen, G.R., Eys, M.A., Zumbo, B.D., and Beauchamp, M.R. (2017) ‘Effectiveness of teamwork training on teamwork behaviors and team performance:  A systematic review and meta-​ analysis of controlled interventions’, PLoS ONE, 12(1): e0169604. Medin, D.L. and Lee, C.D. (2012)  ‘Diversity makes us better’, Association for Psychological Science, [online] 27 April, Available from:  https://​www.psychologicalscience.org/​observer/​diversity-​ makes-​better-​science [accessed 15 July 2020] See, L.A. (2007) ‘Introduction:  Human behavior theory and the African American experience’, in See, L.A. (ed) Human Behavior in the Social Environment from an African American Perspective (2nd edn), New York, NY: Haworth Press, pp 3–​25. Wilensky, G.R. and Satcher, D. (2009) ‘Don’t forget about the social determinants of health’, Health Affairs, (28)1: w194–​w198. Yaya, S., Yeboah, H., Charles, C.H., Otu, A., and Labonte, R. (2020) ‘Ethnic and racial disparities in COVID-​19-​related deaths: Counting the trees, hiding the forest’, BMJ Global Health, 5(6): e002913.

Zastrow, C.H. and Kirst-​ Ashman, K.K. (2010)  Understanding Human Behavior and the Social Environment (8th edn), Belmont, CA: Brooks/​Cole.

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9 Using photovoice to explore students’ study practices Emma Waight What is photovoice?

Photovoice is a participatory research method. The method asks participants to take photographs of things they associate with and/​or practice as part of the community to which they belong, and thus give ‘voice’ to their collective experiences for the purposes of knowledge creation. These photographs can then be used as prompts in individual or group interviews and treated independently as data for visual analysis. In the example described in this chapter, photovoice was utilized as a method to conduct research with postgraduate research students who were working from home during the United Kingdom’s COVID-​19 lockdown period (data collected in May 2020). The chapter reports on this study and provides practical advice on adopting photovoice as a non-​intrusive, time-​effective and user-​friendly method for collecting data during times of crisis. The term ‘photovoice’ was coined by health researchers Wang and Burris (1997) to describe the participatory method they adopted for public health research with rural women in China. By giving the women cameras and asking them to photograph their lives, Wang and Burris were able to illuminate the everyday experiences of these village communities as part of a health needs assessment. The images were used to guide group discussions with the women, who worked together to select a body of images that they believed best represented their community and the story they wanted to share. The method therefore ‘entrusts cameras to the hands of people to enable them to act as recorders, and potential catalysts for change, in their own communities’ (Wang and Burris, 1997, p 369).

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It is the combination of participant-​led photography and the potential catalyst for change that sets photovoice apart from other visual methods such as documentary photography or photo elicitation. Photo elicitation, in particular, is a method increasing in use and a term often used interchangeably with photovoice. To clarify, this chapter follows Shaw’s (2020) lead in distinguishing photo elicitation as based on a photograph produced by the researcher; rather than photovoice, where the images are produced by the participant. Co-​ construction of knowledge is at the heart of photovoice, which is built on foundations of feminist theory and critical pedagogies of co-​enquiry (Liebenberg, 2018). It is one method in a toolbox of participatory methods that aim to democratize knowledge by diminishing the power imbalance between researchers and the groups of people at the centre of enquiry. Participatory methods are not just considered an ethical approach to knowledge creation, but also have the potential to produce more valid data by limiting the opportunity for misinterpretation of the issues affecting a community (Wang and Burris, 1997). To complete the co-​ enquiry process, this ‘authentic’ data (Herganrather et al, 2009, p 687) should be used to inform improved policy and practice in the community.

The study

The study example given in this chapter aimed to ‘materialize’ doctoral student writing by drawing on the theory of the new materialisms to explore the spaces, materialities and timescapes of doctoral writing. New materialism claims that all matter (human and non-​human) is relational, and the intra-​actions of this relationality co-​produce human and non-​human matter, time, spaces and their signification (Barad, 2007, Coole and Frost, 2010). At the centre of new materialisms is the capacity of matter to affect (Barad, 2007) and this provided a fruitful lens for exploring doctoral student writing as a relational practice. The central question was therefore ‘How do doctoral students experience writing in time and space?’ The ultimate goal was to develop recommendations for both

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institutions and doctoral students themselves in order to improve academic writing experiences and productivity. As studies have found academic writing to be a key wellbeing stressor for students (see Sverdlik et al, 2018), improved student wellbeing also motivated the study. Although a community of doctoral students is very different to the kinds of communities at the heart of much participatory research, a community arguably privileged as opposed to marginalized, utilization of the method demonstrates its ability to capture insight that may not be captured through other methods. This study therefore responds to calls from Shaw (2020) and Wass et al (2020) to make better use of photovoice in educational research. With an attendant focus on materialities of experience, visual methods were employed in an attempt to illuminate these everyday, mundane experiences in a way narrative alone may not provoke. Photovoice with online interviews were adopted in lieu of the researcher being able to meet with participants face to face. To test the method and bring participants into the process of developing the methodology, two pilot interviews were conducted. The first was more of a scoping interview without photovoice, and the second was a trial run of the photovoice and online interview. Both of these discussions supported the development of the semi-​structured interview schedule and the guidance that study participants were offered. The main data collection phase ran in May 2020. Nine doctoral students, from various disciplines and demographics, were recruited through one research-​intensive British university. The original study was initiated prior to COVID, and on the expectation that doctoral students experienced a variety of ‘spaces’ and ‘timescapes’ of writing. In transitioning to the national lockdown scenario, many potential participants were concerned that they had little of value to photograph because they were then working in one place. They needed reassurance that they did have something valuable to contribute, and indeed, it was their everyday, seemingly unremarkable experiences of writing that the study was interested in. Furthermore, the nature of space and time

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seemed all the more significant, not less, when faced with this unprecedented lockdown scenario. Kolb (2008) lists four phases that are important for the adoption of photovoice. First, the participant is briefed and asked to take photographs in response to a question; this starts a cognitive process as they reflect on the meaning of the question. In the second phase, participants shift from thinking to doing, as the participants implement their reflections by taking photographs in their social or material surroundings. The third or ‘decoding’ phase requires participants to present their photographs and verbalize their thinking about them in an interview with the researcher. The final phase involves researchers analysing all of the data –​photographs, interviews and transcripts. These four phases were followed in the doctoral writing project. After being briefed by email, participants were asked to take photographs over a one-​week period using their own smartphone camera. They were instructed to photograph anything that seemed relevant to their writing experiences and many images contained no direct link to writing at all. To provide guidance on an appropriate number of images, five was suggested as a minimum and emphasized that they didn’t have to take photographs every day. By suggesting a low number, it was hoped participants would consider this manageable. As a result, participants took between five and fourteen images. Images were emailed to the author before an online video interview took place in which participants were asked to use these images as prompts to discuss their experiences. The online interview also included some general background questions about the participants’ experiences of their PhD to date. Following the principle of co-​constructed knowledge, participants were emailed these questions before the interview so that they had some time to reflect on their answers. This also meant that participants could have a copy of the questions on hand to view during the interview, limiting the chance of miscommunication. The questions were sent on the day of the interview or the day before, to avoid leading the participant towards any particular direction with their chosen photographs.

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The study was granted favourable approval by the ethics committee of the relevant university, with an update provided by the researcher to the committee in responding to lockdown amendments. In light of informed consent and anonymity procedures, participants were instructed to not include other recognizable individuals in their photographs. They were also asked to protect any personal data by being aware of the images they shared; for example, post left on a table may inadvertently include a participant’s address. In the event that these kinds of images were valuable to the participant’s story (an example being a participant’s photograph of her grandparents and how their autobiography inspired her whole PhD topic), identifiable features could be blurred before filing the data. Interviews were audio recorded but not video recorded. In a different community setting, inclusion of others in a photograph is much more likely. In this instance, consent should be sought from any identifiable individuals and/​or identifiable features may be blurred during the data management phase. Interviews were transcribed and imported to the qualitative data analysis support software NVivo. Each participant was filed as an individual source, with his or her photographs and

Figure 9.1  Example of photovoice imagery Source: author’s own

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transcript kept together. Photographs and transcripts were coded; first deductively, according to the research aims, before a second round of inductive coding to capture the participant-​ led themes. Although the software supports data analysis, care was taken not to dislodge codes from their broader narrative by regularly checking codes against the complete transcript before drawing conclusions.

Evaluating photovoice

Beyond the knowledge equity argument for photovoice, photovoice has a number of advantages over other research methods. In the case of the doctoral writing project, utilizing a visual method was compatible with the new materialist epistemology adopted to guide the research. The study was based on the assumption that material and other non-​human things (such as technology) played a role in experiences of writing. Therefore, words alone were considered inadequate. Although one could argue that photographs cannot compare to the sensory experience of being in a space, the principle of photovoice lies in the name. The goal is not for the researcher to interpret that space; it is for the participant to interpret. The photographs are there to prompt reflection and to illustrate the participant’s experience. In the case of this project, some photographs provided a direct representation of writing experiences (for example, a photograph of the participant’s desk) and others were more symbolic. One participant took a photograph of her bicycle (Figure 9.1), explaining: ‘I like exercising, and this year I set myself a goal to do a triathlon. The reason I chose to do a triathlon was because I knew that it would be really hard and it would get me into a kind of focused attitude. And on the flipside, I knew that if I had a really bad day with my PhD, in the sense that I feel like I haven’t got a lot done … I knew that every single day I’d have to train to do this triathlon. So even if I had a really bad, really long, really horrible PhD writing day, that I would have something in the bag that I knew I’d done and I felt good about.’

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The photograph of the bicycle prompted a discussion around productivity, mental health and self-​ esteem in an indirect way. The above quote is just a small snippet of that conversation. It is possible that other methods of data collection could have missed this, for example, a standard interview on writing experiences, or a researcher-​led photo elicitation exercise. Photovoice can thus provoke intimate and reflective responses, as Liebenberg (2018, p 4) states, ‘the act of interpreting an image creates a slower and more critically reflective space within the research process’. Similarly, and pertinent for times of crisis, participants can use photography to capture and track experiences as they unfold in time and space. It requires relatively little equipment and preparation and, as this study attests, can be managed by a researcher entirely at a distance assuming participants have access to the internet. Despite initial concerns about the ability to build rapport online, and barring the occasional lost internet connection, a surprising level of empathy was achieved through this method. It is necessary to note, however, that as the participants were themselves doctoral researchers, they had a prevailing understanding of research processes which no doubt supported levels of engagement and, ultimately, methodological success. As with any project, there were challenges. The most significant of these was participant recruitment. Despite an email going out to all doctoral students across the university, recruitment was difficult and relied more on personal connections. This meant that social science and humanities disciplines were over-​represented, and no participant came from a lab-​ based science background. Six women and three men were recruited, but a range of nationalities were represented, as well as diversity in PhD stage. The study benefited by posing some standard interview questions to all participants as this provided context and an element of consistency. The diversity of images collected is a strength, but isn’t suited to all research projects if you have specific questions to explore. This is where a group interview could be helpful, to encourage members of the group to share and compare experiences and bring key themes organically to the fore. As stated previously, there are also ethical challenges

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related to anonymity and participants need to be carefully briefed so as not to breach these conditions or cause upset to others. A final caution comes from Gubrium and Harper (2013, p 73), who say that ‘the “user-​friendliness” of photo-​voice can lead to its misuse as a “quick-​and-​easy” replacement for long-​ term ethnographic engagement and immersion in fieldwork contexts’. The danger of photovoice is that it is adopted for novelty’s sake or to tick the participatory box. Researchers should therefore ask themselves if they are truly open to the co-​creation of knowledge, and if they have the capacity to feed that insight back into the community through policy and practice. With organization and care, photovoice provides a non-​intrusive and accessible way of collecting data in a range of scenarios.

References Barad, K. (2007) Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter and Meaning. Durham, NC:  Duke University Press. Coole, D. and Frost, S. (2010) ‘Introducing the New Materialisms’, in Coole, D. and Frost, S. (ed) New Materialisms:  Ontology, Agency, and Politics. London: Duke University Press: 1–​43. Gubrium, A. and Harper, K. (2013) Participatory Visual and Digital Methods. Walnut Creek, CA: Left Coast Press. Hergenrather, K.C., Rhodes, S.D., Cowan, C.A., Bardhoshi, G. and Pula, S. (2009) ‘Photovoice as community-​ based participatory research: A qualitative review’, American Journal of Health Behavior, 36(6): 686–​98. Kolb, B. (2008) ‘Involving, sharing, analysing –​Potential of the participatory photo interview’, Forum:  Qualitative Social Research 9(3). Available from:  https://​www.qualitative-​research.net/​index.php/​ fqs/​article/​view/​1155> [accessed 22 September 2020] Liebenberg, L. (2018) ‘Thinking critically about photovoice: Achieving empowerment and social change’, International Journal of Qualitative Methods, 17(1): 1–​9. Shaw, P. A. (2020) ‘Photo-​elicitation and photo-​voice:  Using visual methodological tools to engage with younger children’s voices about inclusion in education’, International Journal of Research & Method in Education, Online First, DOI: 10.1080/​1743727X.2020.1755248 [accessed 18 May 2020] Sverdlik, A., N. C. Hall, L. McAlpine and K. Hubbard (2018) ‘The PhD experience:  A review of the factors influencing doctoral students’

completion, achievement, and well-​being’, International Journal of Doctoral Studies, 13: 361–​388. Wang, C. and Burris, M.A. (1997) ‘Photovoice:  Concept, methodology, and use for participatory needs assessment’, Health Education and Behaviour, 24(3): 369–​387. Wass, R., Anderson, V., Rabello, R., Golding, C., Rangi, A. and Eteuati, E. (2020) ‘Photovoice as a research method for higher education research’, Higher Education Research & Development, 39(4): 834–​850.

5.  Corresponding author: [email protected] 6. The concept of turning a research scenario that threatens to become a full stop into a comma is inspired by Tara Brabazon’s (2020) Comma Vlog series. 7.  See Deborah Lupton’s timeline of COVID-​19 in Australia.

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10 Scicurious as method Learning from GLAM young people living in a pandemic about cultivating digital co-​research-​creation spaces that ignite curiosity and creativity Kathryn Coleman5, Sarah Healy, Niels Wouters, Jenny Martin, Lea Campbell, Sam Peck, Amanda Belton and Rose Hiscock “What I love is how we managed to transition so swiftly from a study initially conceived to happen in-​person, to digital and in solitude and –​through the zines –​in a way back to analogue. Meandering across platforms and techniques we still managed to generate heaps of data, discussion and reflection.” (Niels Wouters in a co-​research-​creation team chat)

Could COVID-​19, this unexpected crisis, act as a comma6 in a co-​research-​creation project to become a breathing space and not a full stop? Maybe this pause is a colon: the two different periods of the project (and life in general) on either side of the pandemic, equally important and dependent on each other for full meaning. In this chapter, we tell the story of how a co-​research-​creation event (the Sci Curious Project) unfolded before and during the COVID-​19 pandemic7; the lead-​up to its irruption (St. Pierre, 1997) and then what came after. ‘Scicurious as method’ emerged out of the unexpected pause and recalibration of the project; a method that emphasizes the creation of research spaces that activate scicuriosity in situated practice. We understand scicuriosity as emerging from collaborative research-​ creation events that ignite curiosity and creativity. Scicurious as method is presented through an

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encounter with speculative fiction and scicurious zine travels. Scicurious as method has significant ethical implications, these reify the potential of co-​designed speculative inquiries with creativity and curiosity at their heart. This is, in part, due to its contingency on cultivating digital co-​research-​creation spaces that enfold rather than eschew the analogue and highlight the joyous potential of a deeply situated, co-​designed speculative inquiry; an inquiry with galleries, libraries, archives and museums (GLAM) young people living in a pandemic.

About the research(ers)

We are an intergenerational co-​ research team from The University of Melbourne, Science Gallery Melbourne (SGM) and Science Gallery’s Sci Curious advisory committee. Sci Curious are an advisory committee aged 14–​25 that inform and shape the future of SGM exhibitions, public events and programmes. SGM is a new addition to the GLAM sector in Australia which shares Science Gallery International’s mission to ignite curiosity where art and science collide (Gorman, 2010). Knowledge of young people’s attitudes towards creativity and innovation is a vital component of Science Gallery Melbourne’s mission to facilitate art and science collisions –​and as a venue that aims to spark curiosity among young people. What makes our Sci Curious Melbourne committee members special is that our Gallery is yet to be physically opened. It is still a site incomplete. They come together to contribute, rethink, re-​imagine what it means to work in a collision between art and science in an unknown space, and even in a global health crisis they keep coming. They know what it means to be scicurious –​a word not known to them before SGM –​and the first phase of our datawork shows quite clearly, they know the effect of this partnering. We now aim to establish methodologies that add depth and breadth to this understanding over time. This is underpinned by the belief that rethinking understandings of how science and art meet through collisions of disciplinary practices (conceived of as

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both process and product) opens opportunities for creativity and innovation. Our year-​ long inquiry was designed for the University and SGM to work together with scicurious young people to address research problems through a shared vision. Our focus was (and continues to be) the creative, curious and collaborative practices involved in designing solutions for known and unknown futures, a fortuitous intent given the events of 2020. From the outset, Sci Curious was conceptualized as a successful and sustainable professional learning community (PLC) (DuFour et al, 2010) of young people. Playing methodologically between sites (for example, University Arts Studio, SGM and, later, in our homes), we designed the project as close-​to-​practice research (Lewis et al, 2018) using digital ethnographic methods and research-​creation (Rotas and Springgay, 2014) to explore practice through the lens of young creative practitioners. The purpose of engaging a close-​to-​practice inquiry was to create a space to examine how a successful and sustainable PLC of young people such as Sci Curious works –​from within. We also wanted to better understand the relationship between PLC-​based learning and creative engagement in the offerings of SGM.

An irruption

In January, as reports of an unnamed virus in China started to emerge, we were planning for a series of practice-​based provocations in the University arts studio (studioFive) that would create the conditions for us to explore, map and figure scicuriosity together. During February, as these provocative (and speculative) research-​creation events neared, global news reports began to be dominated by COVID-​19. A dawning realization of the impact of the pandemic necessitated a pause to reflect on the needs of our young people. We held their (our) needs close as we re-​ thought the next stage of the

8.  For details of full research design see OMEKA.

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research. As a PLC, they had a togetherness, a connection that united their ways of being scicurious within SGM. Survey data8 from an early phase of the project showed they felt that SGM and Sci Curious had affected their lives, their learning and ways of seeing themselves as members of the Sci Curious team and in their learner worlds. Early March 2020, the co-​ research team explored the survey data together to orientate our research. Then the University campus abruptly closed, and Australia went into lockdown. During the lockdown many of the team experienced exhaustion. They (we) had been online for most of the day, as schools and classes went online. We did not want to contribute to being zoomed out. We asked the co-​research team, where next?

After the comma: The emergence of ‘scicurious as method’

This was already perceived to be a speculative methodology (Springgay and Truman, 2017), working with young people within the academy but outside of it, that provided constraints and opportunities to rethink the role of method and theory. COVID-​19-​the-​comma gave pause to re-​focus on what our young people needed now that the future from before was gone. The comma afforded space to rethink method, and begin to trouble (Haraway, 2016) being scicurious. Being scicurious as method is not an anti-​method or a non-​method, or an after method (Law, 2004). Being scicurious is a speculative method (Dunne and Raby, 2013) involving an ethics of joy (Spinoza, 2018) and an intensification of connectedness, care and trust. An ethics of joy stems from our relational onto-​epistemology and commitment to process philosophy. It materializes in our methods through open-​ ended, creative practices that enhance, augment and intensify the power of those involved in the co-​research to connect and act with scicuriosity. Part of this involves the curation of spaces (both analogue and digital) that invite the co-​ research team to make-​ with each other through joyous encounters. To design and co-​ research as iterative, responsive methods shift depending on emergences from within or, as happened in our case, unexpected events in the world. The impending pandemic created an urgent need

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to move online and recalibrate the co-​research through co-​ design. Speculative co-​design (van den Bergha et al, 2018) is a slippery space between art and science, a site for exploring and wandering within unknown futures. As van den Bergha, Robert and Zilberman (2018) explain, “Speculative co-​ design is an imaginative process through which children and adult collaborators can design alternate futures together” (np). We set up digital sites for the project team to enter the imaginative space of speculative co-​ design; to foster connection and the co-​research(ers) capacity to be curious, creative and imaginary explorers with/​in the revised project. We have not been seeking to know, but to imagine how we might come to know otherwise, and infused our speculative co-​design with the ethics of joy as a commitment to research practice that seeks affirmational change.

Together (apart): Connecting through ideas and stories

Within speculative fiction and imaginaries, we met Sam Peck, dear data and Octavia Butler (Streeby, 2016) via a live zoom studio-​like session; each of us ensconced with our drawing materials, sheltering in place in our homes in Australia, Malaysia and America. Sam invited us to consider what ideas, stories and technologies we needed to come to know-​with (or become-​with). Then, with Rube Goldberg’s elaborate machines as inspiration, Sam prompted the research team to take up ways of working beyond the human, the rational and the instrumental. This collision of sites and cites generated new ideas and stories. Speculative storying in this zoom meeting of people and ideas and stories –​and ridiculously excessive machines –​altered the team’s direction. We had been speculating about the possibilities of doing co-​ research in a pandemic with young people on what it means to be scicurious in a PLC. After Sam’s in(ter)vention, another comma was added, a breathing space where our Sci Curious co-​researchers indicated their interest in speculative fiction. They wanted to take up the challenge of finding scicurious ways to imagine a way through impossible situations, opening the possibility of moving past the event horizon. During

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an unfolding pandemic, a worsening climate crisis, and growing awareness of systemic racism, emphasizing affirming possibilities became critical. As a team we went from studio-​ based explorations of the possibilities of knowing in a Sci Curious PLC to un-​sited (or digitally re-​sited) speculating about everything. We assembled a multi-​ modal physical-​ digital ecology with home-​posted-​to-​home content, zoom, Microsoft Teams, email. One of the growths from this is the Zine Travels, a scicurious living data-​artwork-​science-​zine (or da(r)ta-​science zine) project, whereby we refer to the artistry of creative research within da(r)ta by inserting the ‘r’ for emphasis.

Zine Travels

SGM, at the time, called for content for the next exhibition with the theme ‘Swarm’. This concept shaped the speculative co-​design framework. This scicurious zine project explores ideas of contagion, pandemic, race, invasion, tension, revision, crisis, illness, person, change, sovereignty, threat, symbolism and radical hope. A swarm of individuals coming together to imagine their way out of the seemingly impossible situations. A swarm using zines as travelling vessels for making and doing data differently. Zines are typically low-​ fi, self-​ published creative works involving original or appropriated content. Each member of the zine project puts a zine into circulation. Once the zine is received, ‘being scicurious’ data is added by the receiver who makes the next zine page, then it is posted onwards to its next scicurious destination. This was a collaborative effort to untangle questions around identity, curiosity and belonging. The time-​ lapses that are part of postal interactions are consistent with our emergent methodology of cultivating breathing spaces. This analogue data generation covers privacy and security of personal data particularly with regard to the 9.  See Healy and Mulcahy (2020) for a more detailed account of the connections between a Spinozist ethics of joy and the conceptualization of response-​ability in Indigenous Australian scholarship.

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data encoded in the zine and its metadata, such as the date sent, or date received. Data and metadata are only visible to participants who have full control over what is to be revealed and what is to be kept private (Corti et al, 2014). The interplay between digital and analogue realms illustrates the digital humanities practice of understanding and generating multi-​ modal data (Svensson, 2016); an exploration of the multi-​ modalities of data as large-​scale swarming of travelling zines as interconnectedness –​generating a scicurious data swarm that creates new possibilities for seeing data as art and data as science. We are engaged in a joy-​full and connected experience with an emotional edge, that heart-​ lift on recognizing a hand-​written missive and the unwrapping of contents not yet known. This cross-​generational research team has wielded analogue and digital approaches to data generation and analysis as they fit the purpose and goals of the research.

Ethics of co-​research-​creation spaces

We, the university researchers, are custodians of the co-​ research project. Before the irruption of COVID-​ 19, we were already operating with/​in co-​research-​creation spaces that were attuned to power dynamics of research. We actively avoided practices that exploited our younger Sci Curious team members and the data we produce together. In adopting a custodial approach to our roles, we are not responsible to _​ _​_​_​ or responsible for _​_​_​_​ but responsible as the university researchers on the team. This approach aligns with the concept of responsibility (or response-​ ability) articulated so well in Indigenous Australian scholarship9 as two key components:  response and ability (Bawaka Country et al, 2019). Yolnu relational ontologies conceive response-​abilities as requiring: 1) “an ability to pay close and careful attention, as part of more-​than-​human worlds, and 2) an imperative to respond as, rather than to be responsible to or responsible for, what is seen/​ learnt/​ understood/​ communicated in more-​ than-​human, situated, ethical ways” (p 684). While the Academy has felt the impact of COVID-​19, it is young people who have arguably been some of the most

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affected. The pandemic forced them to find new understandings of themselves in relation to the world we thought we understood. As custodians of our data, our team attended to the urgent need for research that connects, that cultivates creative digital co-​research spaces and queries this new world in curious ways. We urgently needed affirming change while being responsive as the university researchers to the needs of the team. The comma of COVID-​19 forced us to recalibrate our research in creative ways that would highlight the joyous potential of co-​ designed speculative inquiry with GLAM young people, that embraced the joy of being understood in terms of the affirming ethics of Spinoza (2018). This research practice pays careful and close attention to all that happens with/​in the research as it unfolds in relation to the world and the events of the world. It responds (as university researchers, as Sci Curious, as co-​researchers) in ways that cultivate the capacity for affirmative change both with/​in the scicurious research ecology and beyond.

Conclusion

Our response-​ability as custodians of the research involved carefully engaging practices to shape an unexpected crisis as an opening into new possibilities for creativity, curiosity and intensified connection. In January 2020 none of us knew what the year would bring. Within the research-​creation event, we did not know the concepts we would explore. This event, this assembling of problems within a trusted space, this co-​ research offered a new way of understanding being scicurious. It is here that we continue to trouble results as speculative design, as dreamings, as commas, as breathing space. And so, the pandemic was not a full stop for this research. The crises of 2020 created space to reconsider speculative inquiry and co-​research-​creation. These impossible times showed the benefit of a co-​research creative space in which young people can do the kind of research they want to do where they want to do it.

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Acknowledgments

The SciCurious Research Project acknowledges and pays respect to the Traditional Owners of the lands upon which our campuses are situated at The University of Melbourne. We acknowledge that Aboriginal sovereignty has not been ceded. We are grateful for trust and support from Science Gallery Melbourne and Science Gallery International. We would like to acknowledge seed funding from The Economic and Social Participation Hallmark Research Initiative (ESPRIt) to create interdisciplinary research partnerships both across and outside the University of Melbourne.

References Bawaka Country, S., S. W. Suchet-​ Pearson, K. Lloyd, M. Tofa, J. Sweeney, L. Burarrwanga, R. Ganambarr, M. Ganambarr-​Stubbs, B. Ganambarr, and D. Maymuru. (2019) “Goŋ Gurtha:  Enacting response-​ abilities as situated co-​ becoming.” Environment and Planning D:  Society and Space, 37(4):  682–​ 702. doi:10.1177/​ 0263775818799749 [accessed July 2020] van den Bergha, V., Robert, D. and Zilberman, N. (2018). ‘Speculative co-​design of robots’. Available from:  http://​www.huminf.tsu.ru/​ wordpress/​wp-​content/​uploads/​2018/​Speculative_​co-​design_​of_​ robots_​new_​version-​1.pdf [accessed July  2020] Corti, L., Van den Enden, V., Bishop, L., & Woolard, M. (2014). Managing and Sharing Research Data. Los Angeles, CA:  Sage Publications Ltd. DuFour, R., DuFour, R., Eaker, R., & Many, T. (2010) Learning by Doing: A Handbook for Professional Learning Communities at Work (2nd ed), Bloomington, IN: Solution Tree Press. Dunne, A. and Raby, F. (2013) Speculative Everything: Design, Fiction, and Social Dreaming, Cambridge, MA: MIT Press. Gorman, M. J. (2010) ‘Experiments in the boundary zone:  Science Gallery at Trinity College Dublin, University Museums and Collections Journal, 2: 7–​14. Haraway, D. (2016) Staying with the Trouble:  Making Kin in the Chthulucene, Durham, NC: Duke University Press. Healy, S. and Mulcahy, D.  (2020)  ‘Pedagogic affect:  assembling an affirming ethics’,  Pedagogy, Culture & Society,  https://​doi.org/​ 10.1080/​14681366.2020.1768581 [accessed July 2020] Law, J. (2004). After Method: Mess in Social Science Research, Hoboken, NJ: Taylor & Francis. Lewis, H., Brooks, S., Parker, G. and Thomas, D. (2018) ‘A close-​ up on close-​to-​practice research:  Reflecting on teacher educators’ experiences of and engagement with a classroom-​ based research

project’, Cylchgrawn Addysg Cymru/​ Wales Journal of Education, 20(1): 76–​92. Rotas, N. and Springgay, S. (2014) ‘How do you make a classroom operate like a work of art? Deleuzeguattarian methodologies of research-​creation’ International Journal of Qualitative Studies in Education, 28(5): 552–​572. Spinoza, B. (2018) Spinoza:  Ethics:  Proved in geometrical order (M. Silverthorne, Trans. M.J. Kisner ed.), Cambridge, UK: Cambridge University Press. Springgay, S. and Truman, S. E. (2017) ‘On the need for methods beyond proceduralism:  Speculative middles, (in)tensions, and response-​ability in research’, Qualitative Inquiry, 24(3): 203–​214. DOI: https://​doi.org/​10.1177/​1077800417704464 Streeby, S. (2016) ‘Speculative fictions of a divided world:  Reading Octavia E. Butler in South Korea’, English Language and Literature, 62(2): 149–​62 DOI: 10.15794/​jell.2016.62.2.001 St. Pierre, E .A. (1997) ‘Methodology in the fold and the irruption of transgressive data’, International Journal of Qualitative Studies in Education, 10(2): 175–​189. doi:10.1080/​095183997237278 Svensson, P. (2016). Big Digital Humanities:  Imagining a Meeting Place for the Humanities and the Digital, Ann Arbor, MI: University of Michigan Press.

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11 Doing design research with youth at/​from the margins in pandemic times Challenges, inequalities and possibilities Rafael Szafir Goldstein, Rosana Aparecida Vasques and Maria Cecilia Loschiavo dos Santos Context: SEEYouth project

SEEYouth is a research project about youth from/​ at the margins carried out by an international group of scholars from the University of São Paulo and the University of the State of São Paulo (both in Brazil), University of Lapland (Finland), University of Leeds (United Kingdom) and Université de Montreal (Canada). Focusing on how to improve vulnerable youths’ and young adults’ lives, this project aims to use arts-​ based and design methods to give voice and help them to empower themselves through trans-​Atlantic mirroring cases from Brazil and Finland. To be held from January 2020 until December 2021, the SEEYouth project suffered a deep impact in its very first months, when the covid-​ 19 pandemic crisis started worldwide. In Brazil, the first case was confirmed on 26 February 2020, in São Paulo. The kick-​off research meeting was planned to be held in Finland by the end of March, but due to restrictions imposed by the pandemic, the country closed its borders in the second week of the month. In Brazil, social isolation was determined at the same time. Thus, since its beginning, all research meetings have been carried out

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online through Skype® for group meetings and Miro® for visual collaboration in a digital whiteboard.

COOPAMARE

Led by the University of São Paulo research team, the SEEYouth Work Package 1 focuses on former homeless young adults’ history of life that could inspire the youth from/​at the margins in Finland. These adults improved their lives by working at a cooperative called COOPAMARE [Cooperativa dos Catadores Autônomos de Papel, Aparas e Materiais Reaproveitáveis (Cooperative of Paper, Scrap and Reusable Materials Autonomous Pickers, in a loose translation)], which we will explain briefly. In Brazil, it is estimated that over 220,000 people are homeless (Natalino, 2020). In São Paulo alone, there are nearly 25,000 people living on the streets (SECOM, 2020). Most of them do not have access to drinking water, sanitation, nutrition, health care or education. The city is also facing new challenges with the increasing number of immigrants and refugees living on the streets. COOPAMARE is the oldest and most relevant operating waste pickers association in Brazil. It has achieved international recognition for its experience in the field of solid waste management and advocating for the rights of populations in a state of social vulnerability. The cooperative was officially founded in 1989, in São Paulo, although its creation can be traced back to 1986. At the time, a group of waste pickers used to hang around the nongovernmental organization called Organização de Auxílio Fraterno (Organization of Fraternal Help, in a loose translation), which worked with São Paulo’s street people. There, the pickers gathered to discuss an idea or two, to have soup and change clothes. One of these meetings was an annual party, called ‘The Street People’s Mission’, in which the pickers decided to contribute with money and make the party better. To do so, they decided to gather the paper they collected in a room, then separated and sold it together.

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Their attempt was so successful, it allowed them not only to embellish the party but also to have some extra money. After the experience, the group started gathering at the Centro Comunitário dos Sofredores de Rua (Community Center for Street Sufferers, in a loose translation), a community centre in São Paulo’s Glicério neighbourhood. It became the pickers’ meeting point and place for debating ideas. Looking to get better rates for their materials, they rented a house, bought an industrial scale and created the Associação dos Catadores de Papel (Paper Picker’s Association, in a loose translation). At the time, the street people and waste pickers were stigmatized, and there were public policies in place that disrupted their work and free circulation throughout the city. Looking for a voice of their own and political organization, the Association’s 20 members at that time created the COOPAMARE cooperative. Through the cooperative, they claimed working rights and better working conditions from São Paulo’s city hall, which gave them the right to work below the Paulo VI overpass in the Pinheiros neighbourhood. It is their headquarters to this day. They also managed to enact a municipal decree recognizing the pickers’ work as a professional activity with the right to work. COOPAMARE’s first objective was to develop a productive chain which included the pickers’ work, which was devalued by society and left the workers with no bargaining power with scrapyards. They were making attempts to turn picking into a profession, in order to improve both their working conditions, their self-​esteem and the way they saw and valued themselves. Thirty years later, COOPAMARE has been responsible for including ‘recyclable waste picker’ as a work category in the Classificação Brasileira de Ocupações (Brazilian Classification of Occupations, in a loose translation), as well as taking part in manifestations, walks and symposiums in favour of waste pickers and street people, and influencing the enactment of Brazil’s National Policy of Solid Residues and other laws and public policies improving the life and visibility of waste pickers and street people. Even so, the Cooperative still faces internal and external challenges. Since 2018, a group of Haitian young adults have been working at COOPAMARE and some cultural frictions

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emerged, such as prejudice against transgender members and difficulties with communication due to different spoken languages. Thus, the Brazilian case study seeks to foster innovative ways to overcome these new challenges using arts-​ based methods and design thinking strategies, and to give visibility to their history of overcoming poverty. Indeed, COOPAMARE is known for its role in enhancing the social and economic status of waste collectors living on the street. Its ‘Workshop School’ –​a space for waste pickers’ education by means of alphabetization, digital inclusion, culture and craftsmanship –​is known as an inspiring case of social innovation.

Challenges

Before the COVID-​ 19 pandemic, our planned research methods relied on interviews, observations and ethnography with COOPAMARE’s young adults. In other words, we needed to collect information throughout direct contact with our research participants. However, after the first cases of the disease in Brazil, our university suspended all field research that required the contact or circulation of individuals. With this new reality, we pondered over our possibilities of remote work. We began reading and revising the previous literature written about the Cooperative, which is abundant, as well as searching for images, videos and past projects online. At the same time, we analysed articles, documents, videos and webinars about remote research. We were looking for ways to solve our dilemma:  how to research remotely a vulnerable population which has problematic internet access, some having neither a smartphone nor even a phone number?

Inequalities

Since the COVID-​19 pandemic had started, it had proven difficult to track down and interview participants as originally planned. The strategy of recruiting a mediator to facilitate contact between informants and researchers, as proposed by

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Kristensen and Ravn (2015), also ended up inadequate since the COOPAMARE leaders are out of contact. Traditional sampling methods are unproductive and improper for groups in situations of vulnerability due to the challenge of accessing them (Ellard-​Gray et al, 2015). Such groups demand a more sensitive and humble position from the researcher that are usually more suitable for qualitative research, ethnographic methods and in-​ person meetings (IriSS –​Stanford Institute for Research in the Social Sciences, 2020a and 2020b). Building trust is an essential process at the beginning of field research. Indeed, Miller (2020) pointed out that doing ethnography in pandemic times is challenging. Nonetheless, he highlights the engagement as an essential step on getting into a community, especially when conducting online interviews and ethnography. One of the researchers has been working with the COOPAMARE community for more than twenty years, but the engagement for this new project as it was planned became impossible under the COVID-​19 restrictions. Since the pandemic deeply affected all fieldwork worldwide, Lupton (2020) organized an online document for social researchers who need to figure out how to overcome the challenges of doing their fieldwork in this time of crisis. This document was crowd-​source built and presents 34 alternative ways of doing remote research with several references for each method. After analysing the document, we identified four groups of remote research methods based on their basic requirements to be applied. These groups are: • methods in which participants must self-​ conduct or self-​record; • methods in which participants must have a cellphone or computer; • methods in which participants must have reliable access to the internet; • methods in which participants must be familiar or present in social media. Some methods may fall into more than one category.

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Therefore, we discarded methods which required internet access or computers, because we could not guarantee that all participants met these requirements and the access to the COOPAMARE ‘Workshop School’ is not allowed at the time of writing. Most remote research methods discussed in webinars and articles during the pandemic fall into one of these two categories, such as remote interviews and digital cultural probes, which could be called ‘digital methods’. We deemed as viable methods the self-​conducted or self-​ recorded methods, such as distance self-​recording, journaling and mobile probes. These methods were chosen because we needed to hear from the people themselves what their needs were, and what they thought about themselves and their situations. Our reasoning was that we could purchase disposable cameras or cellphones and distribute them amongst participants, which would make these three methods possible. On the other hand, this solution requires one initial contact, which we still cannot figure out how to do without breaking the social distancing rules. Unfortunately, we still lack the means to locate and keep in touch with the participants throughout the study. To the present day, we could not solve these problems, and keep doing secondary research with published and online material available.

Figure 11.1  A view from COOPAMARE with some waste pickers Source: (COOPAMARE, 2016) COOPAMARE’s Facebook cover, uploaded on 2 September 2016

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Possibilities

Secondary research, however, proved to be a middle ground for us. Public photos from Facebook, research done with and about COOPAMARE, movies and past interviews are being used to build a repository about the group and their context. Their online presence is sparse, with few social media posts and photos, and past movies (A Margem da Imagem [Mocarzel, 2003]) don’t focus entirely on their story. While data about them is freely available and easy to locate, we recognize that their past interviews’ situation is very different from their current situation and the problems they are now facing. Still, many interviews and photos from previous academic research could be aggregated and provide relevant insights. While the pandemic situation persists, we decided to produce a video art exhibition about their history of life and to use storytelling to show how they overcame the situation of living on the streets and of poverty through COOPAMARE, aggregating all material from our repository that could inspire the immigrant youth from the Finnish case study through the mirroring method. One of the advantages of a video art exhibition is that it could be easily sent to our research partners from Finland, UK and Canada, and also be projected at the buildings’ walls in São Paulo, giving visibility to COOPAMARE. This video has the possibility of showing how much adversity this population face and how much strength they draw from one another. This video is now under production, and we hopefully will be able to realize the second phase of the research next year, together, at the Cooperative, focusing on their current situation. SEEYouth has been developing a website where we share our current progress. At the time of writing, the website is not live. We are sharing a redirect url (rebrand.ly/​SEEYouth) so anyone reading this can access the website once it’s up. It is worth mentioning the project follows guidelines of the Research Ethics Committee (CEP) and the Brazilian National Health Council. Thus, the integrity of research participants, including their privacy, will be rigorously protected in all project publications, data storage and exhibitions.

References COOPAMARE (2016) Facebook profile cover [Online image]. Available at:  https://​www.facebook.com/​coopamar e/​ p hotos/ ​ a .327310387613084/ ​ 3 30803087263814/​ [accessed 20 April 2020] Ellard-​Gray, A., Jeffrey, N.K., Choubak, M., and Crann, S.E. (2015) ‘Finding the hidden participant:  Solutions for recruiting hidden, hard-​to-​reach, and vulnerable populations’, in International Journal of Qualitative Methods, p1–​10. DOI: 10.1177/​1609406915621420 [accessed 30 May 2020] IRiSS –​Stanford Institute for Research in the Social Sciences (2020a) Doing Ethnography Remotely [Online Website]. Available from:  https://​ iriss.stanford.edu/​doing-​ethnography-​remotely (hub with 6 videos) https://​youtu.be/​mrmm_​p9egKc (video 1); https://​youtu.be/​ QSSdK14FEVM (video 2); https://​youtu.be/​XRn_​eUQFhLQ (video 3); https://​ youtu.be/​ d00fvk2dZJo (video 4); https://​ youtu.be/​P8H3YZJlupY (video 5); https://​youtu.be/​z_​_​ t7WkQ2c4 (video 6) [accessed: 5 June 2020] IRiSS –​Stanford Institute for Research in the Social Sciences (2020b) Webinar –​Doing Ethnography Remotely [Online Webinar]. Zoom hosting platform, Live on 5 June 2020. Kristensen, G.K. and Ravn, M.N. (2015) ‘The voices heard and the voices silenced: Recruitment processes in qualitative interview studies’, in Qualitative Research, 15(6):  722–​ 737. DOI:  10.1177/​ 1609406915621420 [accessed 1 June 2020] Lupton, D. (ed) (2020) Doing fieldwork in a pandemic [Online crowd-​ sourced document]. Available from:  https://​ docs.google.com/​ document/​d/​1clGjGABB2h2qbduTgfqribHmog9B6P0NvMgVuiHZCl8/​edit?ts=5e88ae0a# [accessed: 29 April 2020] Miller, D. (2020) How to conduct an ethnography during social isolation [Online Video]. Available from:  https://​www.youtube.com/​ watch?time_​ c ontinue=5&v=NSiTrYB- ​ 0 so&feature=emb_​ l ogo [accessed 5 April 2020] Mocarzel. E. (2003) A Margem da Imagem [Film]. São Paulo:  SP Filmes de São Paulo. Natalino, M. (2020) Nota técnica nº 73 –​Estimativa da População em Situação de Rua no Brasil (Setembro de 2012 a Março de 2020) [online]. Published:  June, 2020. Available from:  https://​ www. ipea.gov.br/​portal/​index.php?option=com_​content&view=article&id=35812 [accessed 30 June 2020] SECOM (2020) Secretaria de Comunicação/​ SP. Prefeitura de São Paulo divulga Censo da População em Situação de Rua 2019 [online]. Published:  Jan, 2020. Available from:  https://​www.prefeitura.sp.gov.br/​cidade/​secretarias/​assistencia_​social/​noticias/​ ?p=292333 [accessed 25 June 2020]

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12 Conclusion Helen Kara and Su-​ming Khoo

We stated, in the introduction to this volume, that creativity and ethics are closely linked. Some of the chapters in the first two volumes of this three-​book series have already demonstrated this. In Volume 1, Judith Henze, Nicole Paganini and Silke Stöber had an ethical foundation for wanting to empower small-​scale urban and rural farmers in South Africa, Zimbabwe, Indonesia and Mozambique to find ways to repair and/​or maintain local food systems during the pandemic. Another ethical consideration was to amplify the voices of these farmers, many of whom are women, and whose voices are often unheard. Henze and her colleagues and participants made creative use of digital methods within a co-​research framework to collect real-​time data in a non-​intrusive way. In Volume 2, Nicola Gratton, Ryan Fox and Teri Elder took an ethical approach to their ongoing support for participatory action research among UK community researchers who have experienced multiple disadvantages. In lockdown, the project support team gradually deprioritized their research aims and prioritized people’s wellbeing, replacing their supportive weekly face-​to-​face meetings with a WhatsApp group and a raft of creative methods of data collection including photographs, diaries, poems and podcasts. This ethical and creative approach had positive impacts on individuals, relationships and the research team as a whole. These are just two examples; we could have chosen a number of others. And we are delighted that the chapters in this volume demonstrate the relationship between creativity and ethics even more clearly. The first section, on creative approaches, encompasses design methods, crafting and making, writing in poetry and prose, story completion, and photovoice. These apparently disparate methods have a

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common element: they prioritize ways in which the participant views or experiences the world over the researcher’s agenda. This is aligned with an ethical stance of working to share power more equally within the research enterprise. Ricardo Sosa and Lisa Grocott reflect on the ways in which design methods can inform and enable research. Speculative thinking enables participants to interact with each other in surprisingly meaningful ways, and analogical thinking prompts participants to go beyond recounting lived experiences to revealing emotions, tensions and imagined futures. Naomi Clarke and Debbie Watson developed research about people’s experiences of lockdown, inspired by Clarke’s Instagram feed which was full of making and creating. They recruited hundreds of participants from 19 countries and took care to maintain participants’ control over capturing and sharing their lives through crafting, diaries and email exchanges. Duduzile Ndlovu reflects on her research training, and her experience of insider research, to critique training which presents potential participants as repositories of data rather than human beings with agency and feelings. She argues for treating participants as partners in research, and uses prose and poetry to illustrate her own resistance to following academic mandates. Vanessa Braun, Victoria Clarke and Naomi Moller used story completion to investigate rule-​ breaking in lockdown in New Zealand and the UK. Participants were presented with fictionalized ‘story stems’ to complete in writing, a non-​intrusive technique which gave participants a high level of control over the data they provided as well as providing an outlet for some strong emotions. Emma Waight used photovoice to investigate doctoral students’ experiences of working from home in lockdown, another non-​intrusive method where participants control what they document and share with the researcher. While the first section of this volume had fourchapters with a common ethical theme across disparate creative methods, the second section had four chapters exploring some very different ethical concerns. Vanessa Malila used the COVID-​19-​related tensions between preserving human health and preserving countries’ economies to explore the broader contradictions between morality and economics,

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and to consider the implications of these tensions and contradictions for research and researchers. Etivina Lovo and her colleagues discuss how their study of human research ethics in Fiji and Tonga was affected by lockdown, and assess the cultural implications of doing online research ethically with Indigenous people in Tonga. Nancy Rios-​Contreras studies forced migration at the US–​ Mexico border and reviewed the ethical planning needed before a crisis or disaster, ethical issues around collecting data during a crisis or disaster and ethical considerations after leaving the disaster or crisis field. Francis Traylor and his colleagues focus on health disparities research with Black people, Indigenous people and people of colour in the US. These groups are disproportionately affected by COVID-​19 and Traylor et al argue that ethical research requires collaborative teams with diverse perspectives and expertise as well as access to technology. While these ethical concerns are very different in their presentation, we argue that, again, they share a common dimension –​or perhaps, more accurately, some common values. And these values are not unusual. The EU-​ funded TRUST project studied ways to achieve equitable international research partnerships. As part of this project, a group of people from around the world worked together to identify values which were shared by people globally. They identified four values which were particularly important in collaborative work such as research and which are recognized worldwide:  fairness, respect, care and honesty (Chatfield et al, 2018). We think these are the values exemplified in the chapters that form the second section of this book. The last two chapters in this volume come from Australia and Brazil, and focus on collaboration and co-​creation as ethical approaches to creative research. Kathryn Coleman and her colleagues from Melbourne conceptualized the start of lockdown as a comma, pause or breathing space for their collaborative research into young people’s attitudes towards creativity and innovation. This enabled careful thought about the needs of participants and researchers, and the rethinking of methods in the light of these needs. Rafael Goldstein, Rosana Vasques and Maria dos Santos work with waste pickers at an educational and campaigning cooperative in São Paulo.

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They used arts-​based methods with design thinking strategies to research and disseminate the waste pickers’ history of overcoming poverty. It is interesting that this volume begins and ends with design research, as design research is itself multi-​disciplinary and its methods are increasingly of interest to other disciplines (Collins, 2019). This volume shows –​indeed all three volumes, together, show more clearly –​that researchers, even in a global pandemic, have a wealth of methods available for use. Our view is that the more methods we understand and can use, the better quality our research is likely to be. We can also see that, although the global pandemic has highlighted some specific ethical concerns, they are not much different from the ethical concerns we face in normal times, though particular concerns may be differently distributed or emphasized. Our authors show how ethical researchers think and act in practice, beyond the purview of research ethics committees. They help us to understand why, in the real world, researchers need to ensure that research is ethical at all stages of the process (Kara, 2018). Through the whole process of editing these e-​ books, we have been astonished and heartened by researchers’ responses and reassessments, care and resilience, and their creative and ethical thought and practice. We thought we might get 15 good submissions. We never imagined receiving dozens, demonstrating such a variety of principles and practice, with a strong and consistent value base. It seems we owe the researchers of planet Earth an apology for underestimating them. We hope you will read, and benefit from, the other two volumes as well as this one, because they have complementary but different overarching themes. And whether you do or not, we hope this volume will help you to take a more creative and ethical approach to your research, during the COVID-​19 pandemic and beyond.

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References Chatfield, K., Biernacki, O., Schroeder, D., Cavallaro, F., Cook, J., N’Diaye, D., Bompart, F., Chennells, R., Toohey, J., Wynberg, R., van Niekirk, J., Aissa, M. (2018) Research with, not about, communities –​ethical guidance towards empowerment in collaborative research. A report for the TRUST project. Collins, H. (2019) Creative Research:  The Theory and Practice of Research for the Creative Industries, London: Bloomsbury. Kara, H. (2018) Research Ethics in the Real World: Euro-​Western and Indigenous Perspectives, Bristol: Policy Press.