Researching in the Age of COVID-19: Volume II: Care and Resilience 9781447360414

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RAPID RESPONSE

Researching in the Age of COVID-​19 Volume 2: Care and Resilience

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-​6040-​7  ePub ISBN 978-​1-​4473-​6041-​4  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 and tables  v Notes on contributors  vii Introduction  1 Su-​ming Khoo and Helen Kara

Part I:  Researcher care and resilience   1. Do the best you can: researcher safety in a pandemic  9 Petra Boynton 2. “I don’t know what I’d have done without this project”: Oral history as a social and therapeutic intervention during COVID-​19   25 Stephanie J. Snow

Part II:  Participant care and resilience   3. Diversity, equity and inclusion research in public health and the health professions education during a pandemic and societal anti-​racism protests  37 Rachel Yoho 4. Methodological and ethical considerations in the study on children’s everyday lives under COVID-​19 in three African countries: Ghana, Nigeria and South Africa  48 Getrude Dadirai Gwenzi, Uchechi Shirley Anaduaka, Stephen Baffour Adjei, Ayomide Oladosu and Sarah Tara Sam 5. Exploring young people’s experiences of growing up under COVID-​19   58 Leanne Monchuk, Laurie Day, Sara Rizzo and Barry Percy-​Smith

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6. Ensuring no voices are left behind: the use of digital storytelling and diary writing in times of crisis  68 Nicola Jones, Kate Pincock, Bassam Abu Hamad, Agnieszka Malachowska, Sally Youssef, Sarah Alheiwidi and Kifah Bani Odeh 7. Using ICT to research maternal, newborn and child health during the COVID-​19 pandemic in Nigeria  78 Osasuyi Dirisu, Godwin Akaba and Eseoghene Adams

Part III:  Shared care and resilience   8. Piling on the pressure? Negotiating burden/​benefit dynamics in social research during times of crisis  91 Oliver Hooper, Rachel Sandford and Thomas Quarmby 9. Keep Talking: messy research in times of lockdown  101 Nicola Gratton, Ryan Fox and Teri Elder 10. Occupational being during the COVID-​19 pandemic  111 Danielle Hitch, Emily Adcock, Emma Cramer and Taylah Sayers 11. Prioritizing inclusion, ethical practice and accessibility during a global pandemic: the role of the researcher in mindful decision making  121 Emma Partlow Conclusion  131 Helen Kara and Su-​ming Khoo

List of figures and tables

Figure 7.1: Summary of the three delays model  82 Table 1.1: Researcher safety assessment framework  12 Table 4.1: Estimated numbers of children (in millions) who have been affected by nationwide lockdowns and school closures in Ghana, Nigeria and South Africa  50 Table 6.1: Research sample by sex, marital status, disability, age and country context  72

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Notes on contributors

Eseoghene Adams (MSc) is a public health researcher with interests in maternal, neonatal and child health, as well as adolescent sexual reproductive health. She is passionate about the wellbeing of women, children and young people. Ese has a BSc in microbiology and a Master of Science in epidemiology from the University of Ibadan. She is currently a research associate at the Research Hub Africa and is deeply involved in research, data analytics and evaluation. Emily Adcock is an Occupational Therapist at Western Health, Australia. Her research interests include disability, rehabilitation and health consumer experience. Stephen Baffour Adjei is a Social/​ Cultural and Human Development Psychologist/​Lecturer at the Department of Interdisciplinary Studies, University of Education, Ghana. Godwin O. Akaba (MBBS, Msc, FWACS) is a senior lecturer in the department of Obstetrics and Gynaecology at the University of Abuja, and an honorary consultant obstetrician and gynaecologist in the materno-​foetal medicine unit of the Obstetrics and Gynaecology department of the University of Abuja Teaching Hospital, Abuja. His research interests include improving maternal and perinatal health in developing countries, health system strengthening towards prevention of maternal and perinatal deaths, prevention of unsafe abortions, haemoglobinopathies in pregnancy, preeclampsia/​ eclampsia, epidemiology of maternal infections and perinatal outcomes. He is also an advocate for women’s sexual, reproductive health and rights. vii

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Sarah Alheiwidi is a GAGE (Gender and Adolescence: Global Evidence) qualitative researcher in Jordan. Uchechi Shirley Anaduaka is a Research Associate in the Department of Economics, Hong Kong Baptist University, working on child wellbeing in the African context. Kifah Bani Odeh is a qualitative researcher for the GAGE (Gender and Adolescence:  Global Evidence) Programme in Palestine. Petra Boynton is a Social Psychologist and Agony Aunt with a background in international health research. She works as a consultant to universities, research organizations and charities training on safety and wellbeing for students and academic staff, and improving health and safety practices for researchers. Emma Cramer is an Occupational Therapist at Western Health, Australia. Her research interests include disability, neurological conditions and the impact of stroke on occupational performance. Laurie Day is Director of Children, Young People and Families Research at Ecorys, UK. Osasuyi Dirisu (MBBS, MPH, MBA, PhD) is a public health specialist and researcher with over 15 years’ experience in public health and development. She is an experienced qualitative and mixed-​methods researcher and has implemented research projects that explore health systems, maternal and child health, social determinants of health behaviour in the context of poverty, norms, social inequalities and gendered issues to develop evidence for improving health outcomes. Osasuyi has an MB BS degree and an MPH. She also has a PhD from the University of Leeds, UK and is currently the research director at Population Council, Nigeria. Teri Elder is Project Assistant for Keep Talking, a UKRI Enhancing Partnerships for place-​based engagement funded project delivered in partnership between Staffordshire

Notes on contributors

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University and Expert CIC, which aims to develop a sustainable model of place-​based participatory action research by strengthening partnerships between universities and community-​based organizations. Ryan Fox is Research Assistant for Keep Talking, a UKRI Enhancing Partnerships for place-​based engagement funded project delivered in partnership between Staffordshire University and Expert CIC, which aims to develop a sustainable model of place-​based participatory action research by strengthening partnerships between universities and community-​based organizations. Nicola Gratton is the Lead for Civic Engagement and Evaluation at Staffordshire University, UK, and has an extensive background in youth work, community development, higher education and participatory action research. Getrude Dadirai Gwenzi is a Research Associate in the Department of Social Work, University of Johannesburg, South Africa, working on children in alternative care and care leavers. Bassam Abu Hamad is GAGE (Gender and Adolescence:  Global Evidence) Associate Director for the MENA region and Associate Professor in Public Health at Al Quds University, Palestine. Danielle Hitch is Allied Health Research and Translation Lead at Western Health and Senior Lecturer in Occupational Therapy at Deakin University, Australia. Her research interests include lived experience, mental health and knowledge translation. Oliver Hooper is a Research Associate in the School of Sport, Exercise and Health Sciences at Loughborough University, UK. Nicola Jones is a Research Fellow in Gender, Equality and Social Inclusion at the Overseas Development Institute and

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Director of the GAGE (Gender and Adolescence:  Global Evidence) programme. 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 a 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. Agnieszka Malachowska is Programme Manager for the MENA Region for the Gender and Adolescence:  Global Evidence (GAGE) Programme. Leanne Monchuk is a Senior Lecturer and qualitative researcher in the School of Human and Health Sciences, University of Huddersfield, UK. Ayomide Oladosu is a PhD student in the Department of Sociology and Social Policy at Lingnan University, Hong Kong, working on disability and wellbeing. Emma Partlow is a postgraduate researcher at the University of Birmingham, UK. Her PhD focuses on the employment experiences of disabled people in both private and public sector workplaces. Her research interests lie primarily within disability research, grounded within sociological understandings amid a contemporary focus upon policies, legislation and lived experiences. Barry Percy-​Smith is Professor of Childhood Youth and Participatory Practice, and Director of the Centre for Applied

Notes on contributors

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Childhood, Youth and Family Research, School of Human and Health Sciences, University of Huddersfield, UK. Kate Pincock is a qualitative researcher at the GAGE (Gender and Adolescence:  Global Evidence) Programme at the Overseas Development Institute, and Research Associate at the University of Oxford, UK. Thomas Quarmby is a Reader in the Carnegie School of Sport at Leeds Beckett University, UK. Sara Rizzo is Research Manager at Ecorys (UK). Sarah Tara Sam is a PhD student in the Department of Sociology and Social Policy at Lingnan University, Hong Kong, working on disability and wellbeing. Rachel Sandford is a Senior Lecturer in the School of Sport, Exercise and Health Sciences at Loughborough University, UK. Taylah Sayers is an Occupational Therapist at Western Health, Australia. Her research interests include aged care, neurological conditions and rehabilitation. Stephanie J. Snow is a historian of medicine and healthcare at the University of Manchester, UK. She is passionate about history’s public value and its power to transform our understandings of the present. Since 2017 she has led a national oral history programme collecting personal testimonies from patients, staff and the public around the history of the UK’s National Health Service –​nhs70.org.uk. The programme is now working to capture the social significance of COVID-​19 through creating a national collection of testimonies and reflections that will be preserved at the British Library as a permanent public resource. Rachel Yoho, PhD, is a Clinical Assistant Professor in the Department of Environmental and Global Health in the College of Public Health and Health Professions at the

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University of Florida, USA. Her research focuses on interdisciplinary and crosscutting concepts in environmental health, climate change and One Health education. Sally Youssef is Qualitative Research Coordinator for the GAGE (Gender and Adolescence:  Global Evidence) Programme in Lebanon.

Introduction Su-​ming Khoo and Helen Kara

As the COVID-​ 19 pandemic hit the world in the early months of 2020, researchers have had to react –​responding to and rethinking their ongoing and near-​future research. As researchers have begun to adapt their research methods to a world that is continuing in a pandemic response mode for the medium and longer term, there are also opportunities to reflect more deeply and widely on fundamental issues and assumptions, and to reconsider ethics beyond the necessary, but limited formal procedures of institutional research ethics approval. Researchers in every part of the globe have responded to the new challenges of researching amid 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 mutual needs for care. The problem of vulnerability becomes more salient in emergencies and disasters like the current global health emergency. This points research towards the question of how it can contribute to the obvious and immediate necessary actions to save lives and deliver relief and help, but also highlights broader responsibilities to ameliorate conditions that produce or worsen vulnerability and places a magnifying glass on conditions of structural injustice and economic violence. The need to uphold principles like human rights and global solidarity becomes more salient in such conditions (ten Have, 2018, pp 490–​491). Resilience is what emerges out of crisis. It is the capacity to respond to, and move through, crisis. Researchers and participants continue to communicate and foster relationships through situations of disaster and emergency. In moving through shared 1

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experiences and challenges, researchers, research participants and communities may collaboratively adapt and change assumptions, behaviours, processes and structures (Goldstein, 2012), both within the research relationships and beyond, to re-​create intention and a sense of community that serves the research process, but also other, wider transformative goals. This book is the second 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. While the first volume focused on researchers’ rapid responses and reassessments, this second volume twines together and connects the themes of care and resilience, while focusing on the common concern with wellbeing. Part I and Part II of this volume address the intertwining themes of care and resilience by first addressing researchers’ wellbeing (Part I) and then considering participants’ wellbeing (Part II). As it is apparent in all the contributions that the two are entwined, Part III further explores care and resilience as a shared and mutually entangled concern. In joining rather than separating the perspectives of researchers and participants, we aim to keep these in view together with solidarity and wellbeing in mind, avoiding the risk of researcher and participant interests becoming ethically separated, diverging and becoming ‘frayed out’ (Khoo, 2015, p 277). Chapter 1 by Petra Boynton begins Part I on researcher care and resilience with a guide to researchers’ safety, wellbeing, training and assistance needs. Boynton outlines key issues that were already present before the COVID-​19 pandemic and discusses how these have played out in the current pandemic context. She addresses researchers directly and kindly, offering practical guidance and pointing to up-​ to-​date resources to support mental health, rights and care for students and staff undertaking research, particularly in laboratory and fieldwork settings. In Chapter 2, Stephanie Snow reflects on an ongoing national research project in the UK, an oral history of the NHS: ‘NHS at 70: The story of our lives’. This inclusive archive of personal testimonies explicitly includes seldom-​heard and less-​represented voices, such as disabled people, people with chronic illness, black, Asian and

Introduction

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minority ethnic (BAME) communities and prisoners. The COVID-​19 pandemic presented a critical juncture that could re-​shape the project, highlighting the common vulnerabilities of research participants and of the researchers as ‘vulnerable listeners’. The interviews themselves became vital spaces for reciprocal care, support, meaning making and concern, with interviewees expressing care and concern for the wellbeing of the interviewers. In Part II on participant care and resilience, Chapter 3 by Rachel Yoho offers a perspective from public health and health professions research and education in the US. The need for diversity, equity and inclusion education became especially complex and urgent when viewed from the context of the ongoing pandemic and unfolding anti-​ racism/​ anti-​ police brutality protests and social upheaval. Chapter 5 by Getrude Gwenzi and four colleagues employs ethnographic diaries to understand children’s everyday lives under lockdown in South Africa, Ghana and Nigeria. Different issues arose in the different countries and these are explored, bearing in mind the ethical considerations that arise in balancing children’s right to be heard with ethical requirements to ensure that children’s vulnerabilities are kept in mind and that they are protected. Chapter 5 by Leanne Monchuk and three colleagues also explores co-​research with young people across seven countries to understand how young people are experiencing and responding to the COVID-​19 public health crisis. They adopt an asset-​based conception of child rights and place young people at the centre of their participatory action research. In Chapter 6, Nicola Jones and six colleagues explain how their research using diary writing and digital storytelling, conducted under lockdown was rooted in existing relationships with young people in Jordan, Lebanon and the Gaza strip. It was important to explore the impacts of the pandemic lockdown on young people in contexts where they are already significantly impacted by political instability and economic exigencies, in order to know how to provide effective support. Chapter 7 by Osasuyi Dirisu, Godwin Akaba and Eseoghene Adams presents research on the issue of maternal and newborn child health (MNCH) in different parts of Nigeria under the conditions of COVID-​19 lockdown.

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They have pivoted their research to online methods to assess the impact of lockdown on MNCH and compare the impact of the lockdown on MNCH service utilization, in a context of already concerning low and uneven levels of utilization and high maternal and infant mortality. Part III explores the intertwining of shared care and resilience and Chapter 8 by Oliver Hooper, Rachel Sandford and Thomas Quarmby explores the ethics of conducting research on care sectors already experiencing significant strain in the UK. Doing research in a time of health emergency might result in ‘piling on the pressure’. Researchers must assess what genuine potential there is for meaningful benefit to participants. If not, it must be asked whether that research should be conducted at all, given that the participants’ work was already challenging, even before the crisis began. Relationship-​building work is central to all social research, but is particularly important in challenged contexts, for example within children’s social care systems and work with vulnerable youth who experience ‘official adults’ entering and leaving their lives. Chapter 9 by Nicola Gratton, Ryan Fox and Teri Elder explores the idea of doing ‘messy research’ in times of lockdown as an extension of their ‘Keep Talking’, UKRI Enhancing Partnerships project for place-​based engagement. Their project encourages the people most affected by a research problem to take a full and active role in the research process. This is a long-​ term community research project in the UK, often involving people who have experienced multiple disadvantages. Gratton, Fox and Elder argue that the wellbeing of the community researchers must be prioritized. The focus on wellbeing acts as a catalyst for creativity and community, as they evolved approaches including poetry, photographs, illustrations, blogs, a podcast and a WhatsApp group to facilitate social connections. Chapter 10 by Danielle Hitch and three colleagues explains and operationalizes a concept of ‘occupational being’ to measure quality of life and resilience within individuals and communities. They report on the operationalization of an Occupational Being Status Scale, plus additional outcome measures of quality of life and resilience in the context of lockdown in Melbourne, Australia. In Chapter 11, Emma Partlow shares a perspective

Introduction

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from an early research stage and by an early-​career researcher. As Editors, we felt it was particularly important to include and address different levels of experience, scope and process across the three volumes. Partlow’s chapter on researcher decision making and research design discusses her thinking-​ through how research methods include or exclude people, with a particular focus on disabled people. She reflects on the issue of power in the researcher–​researched relationship and considers how power differentials may result in greater inclusion or exclusion, especially when engaged in remote and digital methods of working and researching. Taken together, we hope that this volume offers a useful window on what researchers across many countries and regions of the world, in different research settings and at different stages of their research projects and careers, are thinking about and doing, as they adapt to researching under new and particularly challenging conditions. This volume’s emphasis on care and resilience points to the collaborative and mutual nature of research and the importance of supportive, mentoring and learning mindsets. It has highlighted the importance and complexities of researching with, as well as about, vulnerabilities, especially of young people, already marginalized or disadvantaged minorities and people with disability. These concerns foreshadow the last volume in this three-​book series, which focuses on researchers adapting to the challenges of researching during a global pandemic through creativity and ethics. We hope that these contributions offer useful support, ideas and inspiration for your own research.

References Goldstein, B.E. (2012) Collaborative Resilience: Moving through Crisis to Opportunity, Cambridge, MA: MIT Press. Khoo, S. (2015) ‘Solidarity and the encapsulated and divided histories of health and human rights’, Laws, 4(2): 272–​295. ten Have, H. (2018) ‘Disasters, vulnerability and human rights’, in O’Mathúna, D.P., Dranseika, V., and Gordijn, B. (eds) Disasters: Core Concepts and Ethical Theories, Cham: Springer, pp 157–​174.

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1 Do the best you can: researcher safety in a pandemic Petra Boynton This chapter addresses researcher safety, wellbeing, training and assistance needs within the context of COVID-​19. It covers sensitive topics so proceed at a pace that suits you, using additional sources of help as required and noting it is not a replacement for supervision, medical or therapeutic care, or legal advice.

Your wellbeing

Before you read further note what you have managed so far –​even if it hasn’t felt like you are coping. Being gentle and loving towards yourself is important. These are not ordinary times and that means prioritizing your needs, comfort and care. A repository of free, multi-​age, multi-​language mental health resources for your use can be found here and alongside this chapter I have written Being Well in Academia: Ways to Feel Stronger, Safer and More Connected (Boynton, 2020a) and Wellbeing in the Pandemic: Building a Recovery Syllabus for Staff and Students (Boynton, 2020b). Both provide self-​ directed learning on mental health, assisting other people, crisis support and tips for self-​care.

BC (Before COVID-​19)

Researcher safety priorities prior to the pandemic included a growing understanding of the need to provide health and safety training to researchers (Boynton, 2016; Tolich et al., 2020); 9

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with a particular focus on lone working (Health and Safety Executive, 2020), buildings and materials (Kuespert, 2016; Stoaks, 2019), travel and fieldwork (Williams et al., 1992), researching ‘sensitive issues’ (Cornejo et al., 2019; Fenge et al., 2019) and studies during humanitarian disasters or conflict (Sluka, 2020), possibly with participants or communities stereotypically deemed ‘dangerous’ (Kendra and George, 2001; Parker and O’Reilly, 2013). All of these are important, but risk stigmatizing particular communities including ethnic minorities, poor, mentally unwell, substance users or other marginalized groups (Boynton, 2016) while suggesting other people, places (including online spaces) or topics are ‘safe’ (Boynton, 2016; Chiswell and Wheeler, 2016; Morgan and Pink, 2017; Pritchard, 2019; DeGroot and Carmack, 2020). When danger is located ‘out there’ (Wood, 1999) the everyday toxicity and threats from academia of racism (Ahmed, 2012; Bhopal, 2019; Sian, 2019), colonialism (Kuokkanen, 2008), sexism (Savigny, 2014), lesbian, gay, bisexual, transgender and queer or questioning plus (LGBTQ+) phobia (Kneale and Becares, 2020), classism (Atherton and Mazhari, 2019), ableism (D’Evelyn et al., 2018) and these intersections can render methodologies risky or unfit for purpose and pose significant risks to students, researchers, participants and other academic staff. Bullying, harassment and abuse within academia (Boynton, 2016, 2020a), pressure to publish, competition, funding, precarity and exploitation all create a climate where researching is difficult and researchers made unwelcome, unsafe or unwell (Newson and Polster, 2019; Passaretta et al., 2019; Boynton, 2020a). In the past few years, a dramatic increase in reported mental distress has been observed among academic students and staff (Koch, 2018; Morrish, 2019; Universities and Colleges Union, 2019) with patchy and often inadequate responses offered (Morrish, 2019; Boynton, 2020a).

Areas of risk for researchers and possible responses1

Safety information, protocols, flowcharts and frameworks, and copies of existing policies (including for home working,

Do the best you can

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online research, returning to work and COVID-​19 guidance) can be used to improve researcher safety and obtained from:

• occupational health; • health and safety officers/​departments; • human resources; • campus security and estates; • teaching and student unions; • diversity, equality and inclusion departments/​officers; • Ethics Committees/​IRBs; • local, state and/​or national government; • local, national or global healthcare organizations, committees and agencies; • professional bodies/​organizations; • training agencies and consultants. Table 1.1 offers a starter framework suggesting ideas to adapt and expand to create your own researcher safety assessment. It details key areas where researchers may be exposed to disease, discomfort or danger. When adapting this table for your own use, add two new columns. One to note and regularly review levels of risk (high, medium and low) and the other to document what has changed or is required due to COVID-​19. You may also want to note who is responsible for tasks and indicate if/​when these have been done alongside any impacts or outcomes. Additionally, you may find it helpful to keep a written, audio or video diary; represent areas of risk as a flow chart; or create separate protocols and training sessions based on the degree to which the pandemic is impacting on your research. A curated list of researcher safety guidance and policies can be found here: https://​theresearchcompanion.com/​safetyprotocols.

The impact of the pandemic on researcher safety

Alongside issues already described, researchers in and outside universities have experienced a period of rapid change with a backdrop of conflicting guidance and uncertainty over regulations and rules (Yong, 2020); exacerbated by

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Table 1.1  Researcher safety assessment framework Area of risk

Impacts and outcomes Ask: What has, will, Reflect: Who might or might happen? be affected or Who is most at risk, harmed and in what and why? ways? Equipment Researchers should Items needed for not be required safer work and to purchase study. equipment or cover affiliated costs their institution should be meeting. Nor work without appropriate equipment.

Travel Travelling for research by car, walking, cycling or public transport.

Addressing and managing risks Consider: How to respond, deal with or cope with issues and events. Ensuring appropriate, functioning equipment is accessible to all. Training on how to use, transport and/​ or store equipment. Repairing and replacing outdated or broken equipment. Providing effective PPE. Transport links Plan travel in failing, breakdowns advance. and accidents. Universities/​ Risks posed by research other passengers. organizations pay Dangers posed by travel costs. public transport A shared diary and exposure to noting researcher’s COVID-​19. locations and schedules with a call-​in system where a missed call will trigger a safety response. If necessary, avoiding any travel for the time being.

Do the best you can Environment The built environment, adverse weather, isolated/​remote locations, extreme climates, unknown or unfamiliar locations. Some areas may be risky –​including campuses and curriculums. Or due to disease, disaster or conflict.

13 Researchers may be at risk from the elements and dangers from unsafe locations (e.g. unsanitary or unstable buildings). LGBTQ+ researchers face danger in countries where being LGBTQ+ is illegal or stigmatized. Women researchers may be vulnerable in gender-​unequal communities. Black, Indigenous and researchers of colour may be at risk in majority white and/​or racist communities.

Ensuring researchers know where they are going, have the correct attire and equipment for the climate, access to maps, are vaccinated as necessary and understand and respect the environment, cultures and communities. Researchers should not be exposed to avoidable risks on or offline. It is the duty of an organization to keep researchers safe and adapt or end projects accordingly.

14 People This may include participants in research, their friends or relatives, people within research spaces. Plus staff and students in university spaces. And people encountered online.

Researching in the Age of COVID-19: Volume 2 Researchers may be directly at risk from participants who may be angry, abusive, infectious, prejudiced, threatening or unpredictable. Risks of physical, emotional or sexual harm or getting sick from others, being robbed or assaulted. Stalking, harassment, bullying or abuse –​either from those encountered in research or more often work colleagues.

Knowing, understanding and respecting communities and participants in research. Training (as appropriate) in communication skills, understanding difference and diversity, de-​ escalation and negotiating strategies, self-​ defence and breakaway techniques. Designing research to be inclusive, accessible and, where possible, informed by participants and communities. Regular supervision and debriefing. The option to avoid particular participants or situations where risks are increased. Clear and enforced anti-​bullying policies. Postponing face-​ to-​face research in COVID-​19 areas or switching it online.

Do the best you can Isolated and/​or lone working May include fieldwork in isolated settings, visits to participants’ homes, or researching alone online.

Labs Handling substances, untidy or understocked labs, poor supervision, lack of training, insufficient storage and inadequate or bullying working policies.

15 Loneliness, boredom, lack of a support network, communication delays and limited facilities can be an issue. As may anxiety and uncertainty over what to expect and how to act in different settings without others there to assist.

Untidy or unclean labs, where overwork is normalized, or researchers are required to work unsociable hours without time off and/​or during periods of unrest (e.g. if curfews are in place). Plus pushing presenteeism or discouraging taking holidays. Recording needs Researchers and questions, working within whistleblowing unsupportive, and/​or reporting bullying or blaming adverse events cultures/​campuses Being able to ask or on badly for assistance, organized projects accommodations may struggle to and accessibilities. know who to report Identifying errors issues to; be blamed or dangers and even though reporting them problems were not and/​or disclosing if their fault; or be negative things have threatened to cover occurred. up abuses or ethical violations.

Using or creating lone worker policies. Ensuring those working alone are not left alone (give regular supervision and check-​ins). Encouraging researchers to use friendship networks on or offline. Postpone or relocate research/​ ers if there are psychological or physical risks. Clear, enforceable policies on lab safety, professional conduct, anti-​ bullying and legal working hours and holidays. Training in the use, cleaning, stocking and storage of all equipment. Rotas and defined responsibilities for ensuring labs are safe, inclusive and non-​discriminatory. Clear pathways to seek help; and reporting mechanisms for noting errors, malpractice or other adverse incidents. This may include the option of reporting anonymously, and for those noting problems support and care should be provided.

16 ‘Sensitive’ research Some topics are, by their nature, highly sensitive, such as violence, abuse, safeguarding, substance use, crime, death, sex or inequalities. Any study has the potential to be ‘sensitive’ as participants may use research to disclose distressing, moving or concerning issues.

Researching in the Age of COVID-19: Volume 2 The impact of witnessing, hearing or other exposure to participants’ stories, homes, health records or other personal data can be tiring, triggering, upsetting or traumatizing. As may incidents occurring within the lifespan of a project that are not directly related to a study (e.g. witnessing an accident or learning a participant has died).

Training for researchers to anticipate issues, set boundaries, have mechanisms for reporting (e.g. a buddy, diary or regular supervision) may help. Noting any unhealthy coping mechanisms/​ trauma responses (e.g. using alcohol). Counselling should be offered strategically (not all upsetting research requires a counsellor, especially not immediately following an adverse event). Supervision Researchers Support and A supervisor who may be stressed training for is over-​invested, due to being supervisors. micromanages, or is over-​monitored Assessment absent, distracted or or left without of supervisor otherwise negligent instruction. Errors workload. or abusive. may occur if work Clearly defined is not adequately roles and supervised. responsibilities for Researchers supervisors and may feel unable teams (including to ask for help. frequency Participants and of meetings wider communities and feedback may be harmed by mechanisms). unsafe practices Pathways for and data may be reporting problems inadequate or with supervisors incorrect. or supervisees that do not leave either at risk of bullying, shaming or neglect.

Do the best you can Online working Demanding Physical problems researchers’ cameras resulting from long-​ are always on can term computer use, cause problems exhaustion from live with accessibility online meetings/​ (equipment and interviews, bandwidth); ableism navigating social (neurodiverse media and online researchers may spaces, feelings of struggle); and being surveilled, safeguarding (if with no downtime. children present). Being pushed to work online without training, support or equipment, and working for long periods on a screen, can cause or worsen mental or physical health problems.

17 Providing equipment, training and resources for online home working (e.g. printers and ink, or a headset). Offering training in online research methods, online etiquette for video and text, and resources to support neurodiverse, deaf, blind and deaf/​ blind researchers or those with other disabilities or chronic illness that make online research difficult or tiring. This may include more rest periods or extending projects. Noting the specific ethical and wellbeing issues of online working, not assuming that online equals no ethics required or that it is automatically easier, more inclusive or safer than offline work.

18 Data collection and analysis The pressure to obtain, analyse and report data can be overwhelming.

Researching in the Age of COVID-19: Volume 2 Primary or secondary data may be triggering in terms of content. The pressure to produce results and publishable/​ impactful outcomes, while adapting rapidly to unfamiliar methods due to the pandemic, can be stressful and disorienting. As may the content of material being assessed (such as accounts of people living through or dying of COVID-​19).

Training on how to collect, enter, clean, analyse and report data. Support and supervision for those working with triggering, sensitive or politically charged data. Advice on data storage, privacy, protection and backups. Acknowledgement that data collection will be more difficult during a pandemic. Specific assistance for those required to collect data rapidly in real time to fight COVID-​19. Health & hygiene There may be risks Provision of masks, Protection from to researchers’ hand sanitizers, risks such as physical health due antibacterial soap, needlestick injury; to the environment protective clothing, clean, safe and or those they screens, social accessible toilets; encounter. If the distancing signage; reducing potential risk of becoming plus updates on damage caused sick or injured is COVID-​19, by long-​term significant, studies institutional policies computer use; should be amended and workplace reducing risk of to reduce harm or health and safety contact with the postponed without guidance. public (and risk penalties on the Inoculations, water of contracting researcher. purifying tablets. COVID-​19). Occupational health assessments. Field-​ based preparation prior to research (see above).

Do the best you can Rapid change and uncertainty Projects and programmes may alter due to unforeseen or shifting circumstances. Events within countries or communities may require projects to upscale or postpone. Researchers within teams getting sick may require others to take over roles. Changing health, war or humanitarian situations may require the removal or redeployment of researchers with other core skills (e.g. reservists, clinicians or policy makers).

19 In situations of rapid change and an unclear future it is difficult to make short-​and long-​term progress. That may impact on what research is planned or started; methods used; new skills to be learned in a short space of time (e.g. online data collection); or side-​lining or postponing research.

Accepting the pandemic is not a stable situation allows us to be flexible, offer support, find alternative routes and prioritize wellbeing and care.

misinformation shared on social media (Brennen et al., 2020). Different national strategies for managing COVID-​19 have led to restrictions on researchers and research, most significantly with conferences postponed or cancelled (Cranford, 2020), field and lab work halted (Johnson and Coleman, 2020) and some researchers being furloughed or losing jobs (Ahlburg, 2020). For researchers who teach, shifting online primarily to live video lectures and a lack of managerial support or clear direction added to an already stressful and confusing situation. More difficulties followed where lockdown or isolation led to many researchers relocating or being trapped as campuses closed (Odriozola-​González et al., 2020). For those home-​schooling or caring, opportunities to teach and research have been drastically curtailed (Myers et al., 2020). Some researchers became sick with or died from COVID-​19. Unfairly, yet predictably, it is black, Indigenous and people

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of colour (BIPOC) (Dave et al., 2020), women (Myers et al., 2020; Wenham et al., 2020), Early Career Researchers (Byrom, 2020), from low-​and middle-​ income countries (Brussevich et al., 2020) and international students (Cheng, 2020) that were most adversely affected. Not least, there has been grief. Grief over people dying (some from COVID-​19, others from other health conditions, accidents, injuries and suicide). Family members, friends, colleagues and research participants have all been lost. And grief has found us in other ways, our circumstances changing, horizons diminishing, opportunities lost, projects disbanded, graduations abandoned. The cost of COVID-​19 is yet to be counted.

Positives in a pandemic

As already evidenced, discussions of researcher safety and wellbeing can swiftly slide into negativity. Either because of entirely appropriate planning to anticipate and respond to problems or dangers; or because of the many reasons academia and research is made unsafe. However, there are #pandemicpositives including: • online conferences, events and meetings are easier to attend; reducing travel, economic and environmental costs; • opportunities to learn and use creative, digital and accessible methodologies; • more inclusive online work and study opportunities for previously isolated researchers; • ability to share good practices and connect with others; • skills or abilities that were more useful within a largely marginalized distanced context now gaining greater mainstream recognition and respect; • social media campaigns and conversations such as #BlackInTheIvory and #BlackInNeuro exposing inequalities and raising profiles respectively; • opportunities to prioritize, focus on and critique researcher safety as a matter of urgency;

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• ensuring mental health support for researchers is provided in timely, culturally appropriate, affordable and accessible ways.

Where next?

While we know this pandemic will take its time and COVID-​19 may never leave us, pretty much everything else is unclear. What will happen within universities? Some intend to open; others plan to continue with online learning, or a blended approach. Our research landscape remains unclear. We may expect a bigger shift to online methodologies, meaning our ethical understanding of these and how we understand, adapt and support the safety needs of researchers is vital. We are used to hearing ‘we’re in this together’ about the pandemic, but in many ways we are not, as COVID-​19 and its impact is hugely unequal and unfair. But researchers can help and support each other to resist unreasonable and unethical demands and practices; expose inequalities; fight for justice; care for ourselves and each other; and use the pandemic as an opportunity to make research safer, fairer and more accessible. But not right now. Right now, you’ve read enough. It is time to stop, rest, have a cup of tea and do something that makes your heart happy. Everything else will still be here and can wait.

References Ahlburg, D.A. (2020) ‘Covid-​19 and UK universities’, The Political Quarterly. https://​doi.org/​10.1111/​1467-​923X.12867. Ahmed, S. (2012) On Being Included:  Racism and Diversity in Institutional Life, Durham, NC: Duke University Press. Atherton, G. and Mazhari, T. (2019) Working Class Heroes: Understanding Access to Higher Education for White Students from Lower Socio-​Economic Backgrounds, London: NEON (National Education Opportunities Network). Bhopal, K. (2019) ‘For whose benefit? Black and minority ethnic training programmes in higher education institutions in England, UK’, British Educational Research Journal, 46(3): 500–​515.

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Boynton, P. (2016) The Research Companion:  A Practical Guide for the Social Sciences, Health and Development (2nd edn), Abingdon: Routledge. Boynton, P. (2020a) Being Well in Academia:  Ways to Feel Stronger, Safer and More Connected (1st edn), Abingdon: Routledge. Boynton, P. (2020b) Wellbeing in the pandemic:  Building a recovery syllabus for staff and students. Available at: https://​theresearchcompanion.com/​recoverysyllabus/​[accessed 27 August 2020]. Brennen, J.S., Simon, F., Howard, P.N., and Nielsen, R.K. (2020) ‘Types, sources, and claims of Covid-​19 misinformation’, Reuters Institute, 7 April. Available at:  https://​reutersinstitute.politics.ox.ac.uk/t​ ypes-​sources-​and-​claims-​ covid-​19-​misinformation [accessed: 18 September 2020]. Brussevich, M., Dabla-​Norris, E., and Khalid, S. (2020) Who will Bear the Brunt of Lockdown Policies? Evidence from Tele-​Workability Measures across Countries. IMF Working Paper. Available at: https://​www.imf. org/​en/​Publications/​WP/​Issues/​2020/​06/​12/​Who-​will-​Bear-​ the-​Brunt-​of-​Lockdown-​Policies-​Evidence-​from-​Tele-​workability-​ Measures-​Across-​49479 [accessed: 18 September 2020]. Byrom, N. (2020) ‘The challenges of lockdown for early-​ career researchers’, eLife, 9: e59634. Cheng, R. (2020) ‘The COVID-​19 crisis and international students’, Inside Higher Education, 19 March. Available at:  https://​ www. insidehighered.com/​views/​2020/​03/​19/​higher-​ed-​institutions-​ arent- ​ s upporting- ​ i nternational- ​ s tudents- ​ e nough-​ d uring-​ c ovid [accessed 27 August 2020]. Chiswell, H.M. and Wheeler, R. (2016) ‘“As long as you’re easy on the eye”: Reflecting on issues of positionality and researcher safety during farmer interviews’, Area, 48(2): 229–​235. Cornejo, M., Rubilar, G., and Zapata-​Sepúlveda, P. (2019) ‘Researching sensitive topics in sensitive zones: Exploring silences, “the normal,” and tolerance in Chile’, International Journal of Qualitative Methods. https://​doi.org/​10.1177/​1609406919849355. Cranford, S.W. (2020) ‘I may not have symptoms, but COVID-​19 is a huge headache’, Matter, 2(5): 1068–​1071. Dave, D.M., Friedson, A.I., Matsuzawa, K., Sabia, J.J., and Safford, S. (2020) Black Lives Matter Protests, Social Distancing, and COVID-​19, Cambridge, MA:  National Bureau of Economic Research (NBER working paper series, no. w27408). DeGroot, J.M. and Carmack, H.J. (2020) ‘Unexpected negative participant responses and researcher safety: “Fuck your survey and your safe space, trigger warning bullshit”’, Journal of Communication Inquiry. https://​doi.org/​10.1177/​0196859920921752. D’Evelyn, S., Mason-​Angelow, V., Merchant, W., Porter, S., Read, S., and Trahar, S. (2018) Universities Need to Develop More Inclusive Practices to Attract and to Value Disabled Staff and Students, Bristol: University of Bristol. Fenge, L.A., Oakley, L., Taylor, B., and Beer, S. (2019) ‘The impact of sensitive research on the researcher: Preparedness and positionality’, International Journal of Qualitative Methods. https://​doi.org/​ 10.1177/​1609406919893161.

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Health and Safety Executive (2020) Protecting Lone Workers:  How to Manage the Risks of Working Alone, Bootle: HSE. Johnson, R. and Coleman, R. (2020) The Quiet Crisis of PhDs and Covid-​19, Sydney: University of Sydney. Kendra, M.A. and George, V.D. (2001) ‘Defining risk in home visiting’, Public Health Nursing, 18(2): 128–​137. Kneale, D. and Becares, L. (2020) ‘The mental health and experiences of discrimination of LGBTQ+ people during the COVID-​19 pandemic:  Initial findings from the Queerantine Study’. https://​doi. org/​10.1101/​2020.08.03.20167403. Koch, A. (2018) How Academic and Extracurricular Workload and Stress Impacts the Mental and Physical Health of College Students, Dayton, OH: University of Dayton. Kuespert, D.R. (2016) Research Laboratory Safety, Berlin: de Gruyter. Kuokkanen, R. (2008) Reshaping the University:  Responsibility, Indigenous Epistemes, and the Logic of the Gift, Vancouver: UBC  Press. Morgan, J. and Pink, S. (2017) ‘Researcher safety? Ethnography in the interdisciplinary world of audit cultures’, Cultural Studies ↔ Critical Methodologies, 18(6): 400–​409. Morrish, L. (2019) ‘Pressure vessels:  The epidemic of poor mental health among higher education staff’, HEPI. Available at: https://​ www.hepi.ac.uk/​2019/​05/​23/​pressure-​vessels-​the-​epidemic-​of-​ poor-​mental-​health-​among-​higher-​education-​staff [accessed:  27 August 2020]. Myers, K.R., Tham, W.Y., Yin, Y., Cohodes, N., Thursby, J.G., Thursby, M.C., Schiffer, P., Walsh, J.T., Lakhani, K.R., and Wang, D. (2020) ‘Unequal effects of the Covid-​19 pandemic on scientists’, Nature Human Behaviour, 4: 880–​883. Newson, J. and Polster, C. (2019) ‘Restoring the holistic practice of academic work:  A strategic response to precarity’, Workplace:  A Journal for Academic Labour, 32: 1–​11. Odriozola-​González, P., Planchuelo-​Gómez, A., Irurtia, M.J., and Luis-​ García, R. (2020) ‘Psychological effects of the Covid-​19 outbreak and lockdown among students and workers of a Spanish university’, Psychiatry Research, 290: 113108. Parker, N. and O’Reilly, M. (2013) ‘“We are alone in the house”: A case study addressing researcher safety and risk’, Qualitative Research in Psychology, 10(4): 341–​354. Passaretta, G., Trivellato, P., and Triventi, M. (2019) ‘Between academia and labour market: The occupational outcomes of PhD graduates in a period of academic reforms and economic crisis’, Higher Education, 77(3): 541–​559. Pritchard, E. (2019) ‘Female researcher safety:  The difficulties of recruiting participants at conventions for people with dwarfism’, International Journal of Social Research Methodology, 22(5): 503–​515. Savigny, H. (2014) ‘Women, know your limits: Cultural sexism in academia’, Gender and Education, 26(7): 794–​809. Sian, K. (2019) Navigating Institutional Racism in British Universities, London: Palgrave Macmillan.

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Sluka, J.A. (2020) ‘Too dangerous for fieldwork? The challenge of institutional risk-​management in primary research on conflict, violence and “terrorism”’, Contemporary Social Science, 15(2): 241–​257. Stoaks, R.D. (2019) ‘Hidden dangers to researcher safety while sampling freshwater benthic macroinvertebrates’, The Great Lakes Entomologist, 52(2). https://​scholar.valpo.edu/​tgle/​vol52/​iss2/​7. Tolich, M., Tumilty, E., Choe, L., Hohmann-​Marriott, B., and Fahey, N. (2020) ‘Researcher emotional safety as ethics in practice’, in Iphofen, R. (ed) Handbook of Research Ethics and Scientific Integrity, New York: Springer International Publishing, pp 589–​602. Universities and Colleges Union (2019) Counting the Costs of Casualisation in Higher Education, London: UCU. Wenham, C., Smith, J., and Morgan, R. (2020) ‘Covid-​19: The gendered impacts of the outbreak’, The Lancet, 395(10227): 846–​848. Williams, T., Dunlap, E., Johnson, B.D., and Hamid, A. (1992) ‘Personal safety in dangerous places’, Journal of Contemporary Ethnography, 21(3): 343–​374. Wood, G.W. (1999) ‘Review of a protocol for researcher safety’, Psychology of Women Section Review, 2(1): 64. Yong, E. (2020) ‘How the pandemic defeated America’, The Atlantic. Available at:  https://​www.theatlantic.com/​magazine/​archive/​ 2020/​09/​coronavirus-​american-​failure/​614191 [accessed:  27 August 2020].

2 “I don’t know what I’d have done without this project”: Oral history as a social and therapeutic intervention during COVID-​19 Stephanie J. Snow As COVID-​19 spread across the globe during March 2020, communities and countries went into lockdown and social isolation became a mainstream public health strategy. NHS at 70, a UK oral history programme that had been collecting personal testimonies from patients, staff and the public about the history of the UK’s National Health Service (NHS) since 2017 suspended face-​ to-​ face interviews. At this point the project had trained over 150 volunteer interviewers in oral history skills and collected more than 800 interviews from people aged 18 to 100+ years with good diversity across ethnicity, geography and perspective. The project’s overarching aim is to create an inclusive archive of NHS history that features voices from communities that are seldom heard and do not have strong historical representation. The choice of oral history as method was driven by this aim. Oral history’s value rests in its capacity to capture personal experiences while giving agency to interviewees to shape the form and meaning of the interview, thereby encouraging sense making and reflection (Maitlis and Christianson, 2014; Kroeze and Vervloet, 2019). The power of oral history to democratize history by broadening reach was further strengthened by our adoption of a volunteer model whereby we train people from all walks of life as interviewers (Jordanova, 2000, p 53). It has gained us access to communities that an academic team 25

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working alone would find difficult to replicate. The scale of the crisis and its potentially devastating consequences convinced us of our moral responsibility to maintain the social connection between the project and its publics by capturing the unfolding of COVID-​19 and this extraordinary period in the longer history of the NHS (Sloan, 2014, p 264). The response from interviewees was resoundingly positive: we have interviewed over 250 people, representing patients, policy makers, frontline NHS staff, young people and individuals with high risk conditions, with many people contributing regularly as the crisis continues. By 2022, there will be three datasets comprising pre-​, during and post-​COVID-​19 interviews. The pre-​COVID-​19 interviews form a baseline for the later sets and will enable deeper understandings of the impacts and legacies of COVID-​ 19 on individual experiences and the broader history of the NHS than post-​ COVID-​19 interviews alone. Thus the chance incidence of a global pandemic has imposed a critical juncture and shaping on an oral history programme that was unimaginable at the outset but is producing impetus to reflect on the ‘messy business’ of oral history (High, 2013, p xvi). COVID-​19 is extending our concept of crisis oral history from work that happens ‘in the aftermath’ with survivors (Cave, 2014, p 11) into something broader that blurs the boundaries between interviewees and interviewers and requires even deeper ethical reflection on mutual care and resilience for all involved.

Crisis in the past

When crisis is in the past and outcomes are known, the interview offers a space which encourages sense making of traumatic experiences in the context of a longer life history (Marshall Clark, 2011; Quinlan, 2011). The roles of interviewee as survivor and interviewer as listener are clearly defined. To illustrate how this shapes interview dynamics I draw on an interview with Pat Sheehan, former political prisoner during the Troubles in Northern Ireland and now Sinn Féin Member of the Legislative Assembly (MLA) for West Belfast (Sheehan, 2019). The focus was on Pat’s experiences of health and the

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NHS in the context of the Troubles, a violent and ongoing conflict over a 30-​year period between loyalists who wanted Northern Ireland to remain part of the UK and nationalists who wanted the unification of Ireland for a period of 30 years. Pat was born in Belfast in 1958 and he first went into prison, aged 19, after being convicted of a bomb attack carried out by the Irish Republican Army (IRA). He was the seventeenth prisoner at the Maze Prison to go on hunger strike in protest at their treatment and in demand for political prisoner status for the Provisional IRA and Irish National Liberation Army prisoners. He survived 55 days without food, a period during which 10 other hunger strikers died. Shortly before the strike broke, Pat was advised by his doctor that his liver was shutting down and there was no guarantee of survival, even if he ended the strike immediately. His narrative contains many moments of emotional intensity such as his reflection on his father’s request to refrain from going on hunger strike as his 24-​ year-​old sister had just been diagnosed with leukaemia: was this cruel, or selfish?, he muses, but concludes that it was the “antithesis” of selfishness as he was putting the good of the collective political movement ahead of his personal relationships. Memories of salivating at images of roast chicken in the Sunday newspaper supplements while having no desire to touch the food that was always present in his cell, and his first taste of watered-​down milk, when the strike broke, as “nectar from the gods” were sharp and visceral. Pat’s political conviction is at the core of his identity: throughout the interview he drew cohesive linkages between his experiences as political prisoner, hunger striker and now, Sinn Féin politician which suggests that he has fully rooted and aligned these in his overarching narrative:  “I’m an Irish Republican who believes Ireland should be a united republic, however that’s not to say nothing good ever came from Britain and the one thing all of us would be thankful for is the National Health Service.” He reinforced the present relevance by adding:  “when there is a United Ireland, they [Sinn Féin] would keep the NHS structure in Northern Ireland”. His past drives his present and future but there is no longer the potentiality for him to die during the hunger strike or for his wider political cause to be extinguished as there was

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in the 1980s. The legacy of the sectarian and political divisions through the Troubles permeates all social relationships within Northern Ireland. Despite the ‘anti-​British’ factor, my status as an ‘outsider’ to the crisis and the absence of direct experience served as strong advantages, encouraging Pat to speak freely.

Crisis in the present

To contrast how sense making and dynamics change when the crisis is ongoing and outcomes are unknown, I draw on the first in a series of COVID-​19 interviews with Jane Doyle, a junior doctor in the UK (Doyle, 2020). Jane’s motive for participation was because COVID-​19 was “a huge historic event and the biggest threat to life within the UK for the last 70 years or so”; “as a healthcare worker, the impact is stark and obvious”, she added. She perceived the interviews as a “coping mechanism” and a means of ensuring a legacy given the uncertainty of what lay ahead. Through the first interview she shared her fears:  working outside her competencies; deciding which patients should have intensive care support; and realizing that patients would have to die without relatives present:  “it just sounds absolutely horrendous, … I feel more anxious than I’ve ever been in my life”. Medicine, she explained, was a defined path framed by training and regulation but COVID-​19 had uprooted all her assumptions about safe practice resting on competencies. A “shocking” letter from the General Medical Council informed her that everyone was expected to practise outside their normal scope during the crisis and allowances would be made for “mistakes”. Moreover, her expectations of caring for patients were thrown asunder because she would be forced to choose between prioritizing her safety or that of the patient. Shortages of protective personal equipment (PPE) meant that she could be called to a cardiac arrest patient and find that the equipment trolley did not have her size of mask. She could try and resuscitate the patient wearing a mask that did not fit, or “stand with hands clasped”. Moreover, COVID-​19 was a disease unlike any other with little warning of danger: patients

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rapidly became so acutely ill they dropped “off the end of a cliff and died”. Each moment of the interview expressed the personal enormity of the crisis she faced and the uprooting of her assumptions and values. Whereas Pat had bound up his distressing and chaotic experiences during the Troubles into his broader life history, COVID-​19 was causing Jane’s life to implode and she expressed the impossibility of reconciling her experiences of the pandemic with her medical training and professional expectations. Speaking at a point when her imagined future was stark and terrifying, she explained that she was drawing comfort from her mother’s exhortation to pretend she was working in a humanitarian crisis in a developing country, rather than the NHS. The interview captured Jane’s raw emotive responses to an ongoing crisis. It was too soon for any sense making to take place, yet she chose to participate in the belief that the interview process would help her to cope with the crisis. Because I too was living in the midst of COVID-​19, exposed to the same media headlines, government briefings and restrictions on my life, I did not need to use my imagination to feel empathy when listening to Jane. The connection was heightened by the fact that my husband was also working in the NHS and expressing similar fears. To avoid any risk of the interview becoming an exchange of thoughts and feelings, I had to hold fast to the bedrock of oral history which is the creation of ‘an environment of neutral and supportive listening … without … demonstrating excess emotion’ (Marshall Clark, 2011, p 262). So how should we listen to crisis when we are also living in it?

Listening through crisis

Listening with empathy and imagination is the cornerstone of oral history but having direct experience or particular connection renders us ‘vulnerable listeners’ (Norkunas, 2013). Whether this additional emotional dimension makes us better listeners is a question for the future. Certainly, in the context of COVID-​19 it sharpens the need for interviewers to reflect even more rigorously on their subjectivity to the interviewee (Yow, 1997; Thomson, 2007). Though our

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individual risks and exposure are variable, the sense of shared crisis has produced a qualitative change in interviewer–​ interviewee relationships. Levels of trust have developed rapidly and interviewees’ awareness that their interviewer is also at risk of experiencing trauma themselves through illness and/​or the loss of people close to them heightens the importance and value of interactions before and after the interview (Sheftel and Zembrzycki, 2013, p 16). The fact that we are undertaking COVID-​19 interviews within an ongoing programme of work with the same group of interviewers means that we are especially well placed to detect the ways in which oral history processes are naturally adapting to the dynamics of a shared crisis in which we are all actors. Oral history’s most important contribution to crisis and trauma work is to support ‘the process of meaning-​making for those who live through traumatic events, as well as documenting that process’ (Marshall Clark, 2011, p 256). Pre-​and post-​interview conversations are proving vital spaces for reciprocal care and supporting meaning making with interviewees expressing stronger interest and concern in the interviewer’s wellbeing and their experiences; Jane apologized after the interview for her emotional intensity, fearing it might have distressed me. When we began COVID-​ 19 interviews our primary concern was the risk of causing potential harm to participants. We extended our usual support by introducing weekly online sessions and one of our volunteers who was also a General Practitioner, offered to provide one-​to-​one support when needed. These sessions became safe spaces in which interviewers could retell stories that had distressed them, share their own experiences of lockdown and on many levels begin to build individual and collective meaning from the crisis. The project already covered illness and death and our interviewers were skilled in listening to difficult stories. This did not protect them from experiencing distress, but the nurturing offered by interviewees, and by fellow interviewers in the support sessions, is proving effective in developing resilience. More broadly, participants are accepting possible distress as a natural concomitant to the process of documenting a global

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health crisis and capturing material that will provide learning for future generations. The switch to telephone as medium has challenges. Unlike face-​to-​face interviews, the voice is the only means of connection and there are no visual cues from the material surroundings or opportunities for studying body language and behaviour (Portelli, 2013, p 279). The power of the voice to express ‘our deepest feelings about ourselves and shifting ideas of what it is to be male or female … volume, pace and pitch summon whole worlds’ is the root of oral history’s potency as a research method (Karpf, 2006, p 290). Much has been written about the importance of silent non-​ verbal cues such as eye contact, facial expressions and bodily movements (Portelli, 2013, p 278). Telephone interviews strip out these soundless cues and this can lead interviewers and interviewees to talk over each other. Telephones do have upsides including less stress for interviewees who do not need to worry about the tidiness of their house and saving interviewers’ travel time. High sound quality Waveform Audio File (WAV) recordings are more difficult to achieve through a telephone because signals and connection strengths vary across the UK. The occasional crackles and interference reflect the practical constraints of working in a crisis and will live on in the archive as permanent reminders of the physical separation yet emotional connection between the two voices. Evaluation through anonymous feedback questionnaires has been built into the programme from the outset and during this crisis is proving crucial in helping us understand the impact of the oral history on all concerned. Interviewees have commented: “the interview enabled me to relive a nightmare that I’d been trying to forget but have really benefited from remembering”; “I can’t talk to my husband or parents about this so thank you interviewer for being my agony aunt”. We know that for many interviewees, the interview is creating space for reflection: “I’ve made a list of what I want to talk about”; “I’m much less anxious now about the situation than I was when I did my first interview”. The sense of personal achievement experienced by interviewers is notable:  “a life-​ enhancing experience”; “you feel you’re working to achieve

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something beyond what we set out to achieve”; and “I don’t know what I’d have done without the project”.

Insights from COVID-​19

Oral history is a potent method for capturing crisis and trauma but COVID-​19 has presented an opportunity to explore its use during a crisis which, at the time of writing, has no end point in sight. It is not surprising that interviewees report it to be a profoundly beneficial intervention which is helping them make meaning during uncertain times. What is novel is the way in which the shared experience of crisis and its ongoing nature is prompting interviewees to nurture their interviewers and stimulate them to engage in informal meaning making. This extends our conceptual framework for crisis oral history beyond something that is done in the aftermath with survivors. It suggests that paying more attention to characterizing crisis in terms of its nature, duration, intensity and so on, and foregrounding the multiple identities at play across survivors, actors and interviewers, would pay dividends. More explicit consideration of these deep interconnections between the processes and outcomes of oral history in crises promises to reveal much about the making of memory and the intersections between individual and social memory. COVID-​ 19 presents an unprecedented opportunity for comparative oral history work. All parts of the world are grappling with common issues of an infectious virus which disproportionately impacts specific ethnic communities. Without a proven vaccine or effective treatment, the dominant public policy response is to therefore diminish transmission by limiting human–​ human contact. What is different, of course, is the response to the crisis by governments and the impact and effects on citizens in different places. Historians around the world have responded rapidly by setting up oral history projects to document experiences of the pandemic for different communities. We now need to come together to support meaning making around COVID-​ 19 at the global level.

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References Cave, M. (2014) ‘Reflections on crisis oral history’, in Cave, M. and Sloan, S.M. (eds) Listening on the Edge: Oral History in the Aftermath of Crisis, Oxford: Oxford University Press, pp 1–​14. Doyle, J. Interview on 29 March 2020. High, S. (2013) ‘Foreword’, in Sheftel, A. and Zembrzycki, S. (eds) Oral History Off the Record: Toward an Ethnography of Practice, New York: Palgrave Macmillan, pp xv–​xx. Jordanova, L. (2000) History in Practice, London: Arnold. Karpf, A. (2006) Human Voice:  The Story of a Remarkable Talent, London: Bloomsbury. Kroeze, R. and Vervloet, J. (2019) ‘A life at the company: Oral history and sense making’, Enterprise & Society, 20(1): 33–​46. Maitlis, S. and Christianson, M. (2014) ‘Sensemaking in organizations: Taking stock and moving forward’, Academy of Management Annals, 8: 57–​125. Marshall Clark, M. (2011) ‘Case study:  Field notes on catastrophe: Reflections on the September 11, 2001, Oral History, Memory and Narrative Project’, in Ritchie, D.A. (ed) The Oxford Handbook of Oral History, Oxford: Oxford University Press, pp 255–​264. Norkunas, M. (2013) ‘The vulnerable listener’, in Sheftel, A. and Zembrzycki, S. (eds) Oral History Off the Record:  Toward an Ethnography of Practice, New York: Palgrave Macmillan, pp 81–​96. Portelli, A. (2013) ‘Afterword’, in Sheftel, A. and Zembrzycki, S. (eds) Oral History Off the Record: Toward an Ethnography of Practice, New York: Palgrave Macmillan, pp 273–​286. Quinlan, M. (2011) ‘The dynamics of interviewing’, in Ritchie, D.A. (ed) The Oxford Handbook of Oral History, Oxford:  Oxford University Press, pp 23–​36. Sheehan, P. Interview on 27 November 2019. Sheftel, A. and Zembrzycki, S. (eds) (2013) Oral History Off the Record:  Toward an Ethnography of Practice, New York:  Palgrave Macmillan. Sloan, S.M. (2014) ‘The fabric of crisis: Approaching the heart of oral history’, in Cave, M. and Sloan, S.M. (eds) Listening on the Edge: Oral History in the Aftermath of Crisis, Oxford: Oxford University Press, pp 262–​274. Thomson, A. (2007) ‘Four paradigm transformations in oral history’, The Oral History Review, 1(34): 49–​70. Yow, V. (1997) ‘“Do I like them too much?”: Effects of the oral history interview on the interviewer and vice-​versa’, Oral History Review, 24(1): 55–​79.

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Acknowledgements

NHS at 70 is supported by the National Lottery Heritage Fund, 2017–​2022; NHS Voices of COVID-​19 is supported by the Arts and Humanities Research Council, 2020–​2022.

II

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3 Diversity, equity and inclusion research in public health and the health professions education during a pandemic and societal anti-​racism protests Rachel Yoho The spring semester of 2020 revealed rapid changes to teaching and research conditions, as well as daily life, due to the COVID-​19 pandemic. Alongside the global pandemic and the shifting of the epicentre of the pandemic to the United States, the country is in the midst of a racial movement focused on Black Lives Matter. The current social and public health situation is a confluence of multiple streams of issues and impacts on lives, individual experience, education, research and potential collective trauma. While the importance of public health and health professions in the public eye has increased dramatically, the educational and training process for future professionals is fraught with unknowns during these multiple, overlapping societal-​level issues. Public health and the health professions require a unique, interdisciplinary model for education across fields of study, as these areas prepare students for vastly different career paths and draw trainees from many academic backgrounds. These disciplines converge alongside the major issues of our time –​the COVID-​19 pandemic, social/​racial injustices and Black Lives Matter protests, and climate change. In particular, there is an urgent need for research in this space focused in public health and health professions education and training programmes. Not only is this a broad, interdisciplinary area essential to training in many disciplines 37

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and career trajectories, but also an essential concern for addressing the pandemic from a variety of disciplinary backgrounds (public health, epidemiology, healthcare practitioners and similar). A greater depth of understanding of diversity, equity and inclusion (DEI) in public health and health programmes presents dual challenges –​(1) research on a changing landscape and (2) focusing on research topics deeply impacting the researchers.

Public health education during the pandemic

Teaching global health at the outset of the pandemic revealed a number of unfortunate ways in which classroom content truly came to life. The relevance of the global health course could not be denied during the spring 2020 semester (Yoho et al., 2020). In reflecting on this work and developing a set of recommendations for best practices in teaching and learning for global health instruction and the public health education community, we emphasize reflective practice and adaptive teaching and learning strategies (Yoho et al., 2020). Both research and education within the public health sphere are, and must be, intensely connected to current events, empathetic and reflective.

The educational community

The early stages of the pandemic are reshaping the learning community. Within the educational sphere, the precarity of non-​tenure track positions is becoming worryingly salient due to reactionary university decisions and hiring freezes (Flaherty, 2020). Further, most traditionally under-​represented groups are found in precarious academic positions (Flaherty, 2016; TIAA Institute, 2016). Instructors and administrators, as well as students, are dealing with unforeseen circumstances. For example, individuals in all academic spaces who are caregivers are balancing an increasingly demanding load with the challenges of remote work, caregiving and physical distancing (Cooney, 2020; Lloyd, 2020). The physical and mental health

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challenges are likely to show gender (Jedd et al., 2020) and other identity-​based stratifications. These impacts strike the most vulnerable, as well as the most traditionally privileged (Cooney, 2020), exposing new issues of inequity in the educational community. Universities and funding agencies need to consider the effects of the COVID-​19 pandemic on researchers (Myers et al., 2020). Each of these inequities and burdens impact individual researchers as well as the research community overall. Accessibility, entrenchment of gender biases (Minello, 2020; Myers et al., 2020), widening of existing inequalities (Belluigi et al., 2020) and further separation in the hierarchical system are all likely outcomes of poorly designed or implemented leadership practices in the duration and aftermath of the COVID-​19 pandemic (Tulshyan, 2020). At this time, a key issue is expanding the understanding of the changing nature of inequalities (Tzanakou, 2020), especially in the educational space. Prior markers of educational DEI topics and issues are no longer sufficient. Intersectionality in educational spaces (Tzanakou, 2020) and a fresh look at DEI are essential to developing new knowledge on training in public health and the health professions.

Research in a time of crisis

Early summer 2020 introduced the very definition of ‘research in a time of crisis’ in the United States. The confluence of issues –​unequal impacts of the COVID-​ 19 pandemic based on race and privilege, police brutality and anti-​racism protests, and unequal impacts of climate change provide an important look at education, not just in public health, but as an interdisciplinary model. Reflective practices provide a unique perspective on what works and what does not, and are cornerstones of effective teaching and learning (Falkenberg, 2012; Zeichner and Liston, 2013; Gunnlaugson et al., 2014) and academic research, though rarely recognized outside of qualitative and socially responsive work. Introspection and reflection provide a greater depth of foundation in critical self-​analysis in daily

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life, as well as within the research space. As such, reflection and communication are highlighted here as key components of understanding research in a time of crisis. The unique ethical considerations for this research of conducting DEI-​ related research centre around the societal upheaval, protests and the #ShutDownSTEM and #ShutDownAcademia days alongside the COVID-​ 19 pandemic. These overlapping topics, as well as climate change, bring the importance of public health education to the forefront, yet likely also have deep impacts on the individuals conducting the research. Many students’ in-​ person internships and experiential learning opportunities for summer 2020 were suddenly cancelled due to the COVID-​19 pandemic. What was planned as a two-​ student recruitment turned into approximately ten to provide more research opportunities. My research team’s remote work focusing on DEI in public health and the health professions became increasingly timely as national and worldwide protests erupted against US police violence and anti-​black racism. This team explored the presentation of DEI mission statements, objectives, activities, trainings, programming and similar publicly exhibited by institutions of public health and the health professions across the United States. Not only is reflection essential to the methods of qualitative research, this positionality further solidifies the purpose of the research and individual participation. As a group, the DEI-​focused research team reflected on individual and shared experiences in our positionality and the research process (Bourke, 2014). These activities focus on the role of the researchers in understanding and interpreting the non-​ numerical data (Clark and Vealé, 2018). Essentially, this is a focus on lived experience alongside research. Research in a time of crisis can bring about a more people-​ focused approach. Often, research is fashioned as if it happened in a vacuum without the involvement of actual people as researchers. The pandemic, as well as the overlapping crises, can –​and should –​bring a renewed sense of humanity and perspective to research. It is our humanity and the needs of

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the research team that must be considered first in our research methods. Priorities for research in times of crisis Focus on providing opportunity and value

The pressing need to understand DEI efforts, especially in colleges of public health and health professions, leads to first investigating the underlying environment. The diversity statements, events promoted and resources provided by colleges of public health and health professions shed light on the environment advertised by the institution. Yet, these statements are not sufficient. Recruiting students for diversity initiatives while failing to create a space of inclusion is destined for insufficiency (Puritty et al., 2017). Expanding the understanding of DEI efforts within public health and the health professions provides an important model for interdisciplinary training and efforts across the disciplines. As a first look at understanding the inclusivity of these colleges, a systematic approach to this analysis yields valuable insights on the environments the institutions propose to facilitate. With this research, students can develop abilities in various research practices, including systematic analyses and infrequently developed qualitative research skills, as well as exploring research literature, all in a remote setting. Further, the remote research team facilitates essential social connections and emphasis on continued professional development, as the team is ‘together apart’. Research in a time of crisis necessitates the focus on value –​both for the participants and of the work. In this case, the team centres around, not only the research subject matter and the relevance in education and society, but the remote opportunity for the students. The one-​hour group meetings have a four-​ part structure:  (1) icebreaker engagement question or reflection on current events; (2) updates on research and activities over the past week; (3) collaborative problem solving and planning for the upcoming week; and (4) professional development support and check-​ins. The research team structure, inspired by distance learning strategies (Brown, 2001, p 18; McElrath and McDowell,

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2008, pp 120–​123), was also influenced by, and occasionally the antithesis of, previously observed research group meetings from several research institutions. As such, this research team is designed specifically to provide value to the team in terms of professional development, skill building and continued engagement with an academic community, while also requiring low time commitments in a remote setting. The specific learning objectives targeted include the implementation of a systematic study, qualitative data collection and analysis and a focus on transferable skills. The group is developing methods for applying a critical analysis method for any type of writing they may be tasked with in the future (Yoho et al., 2018). In this case, applying the analytical skills to create academic writing also helps students to practice the transferable abilities to “write for a purpose outside of the classroom” (Avila Segura et al., 2018, p 1). Also important, however, is the authentic interest to be involved with something that can make a difference in DEI in public health and on campus. Generally, academic institutions are a reflection of a society in which inequities arise ‘from the widespread historical and contemporary maldistribution of power’, which is further translated into the public health fields (Jackson, 2020). Inequities can be viewed as obstacles to overcome or as opportunities for thoughtful engagement and learning (Advisory Board to the President’s Initiative on Race, 1998; Sinkfield-​Morey, 2018). In this research in a time of crisis, the value lies in both the research topic and the researchers’ experience. Be adaptable and flexible

Managing a completely remote research team revealed difficulties of staying connected and implementing the right digital tools to be organized and on track. The qualitative research and thematic analyses are proving fruitful, yet the ‘diversity’ of information about DEI initiatives presents unanticipated challenges and necessitates an even more deeply critical and introspective look at the lenses through which we organize and interpret the findings. Further, the team gained new digital skills or practised remote team-​based collaboration for an increasingly remote and technology-​enhanced world.

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Build community

Outlined above, the structure of the research meetings centred around community building, similar to the three stage strategies applied in distance learning of developing friends, collaborative community membership and camaraderie building (Brown, 2001, p 18). In adopting the ‘together apart’ mindset, the group developed more personal connections through expanding the focus from merely the research topic to knowing our fellow team members as people. The strategies, continually stemming from distance learning, focused on the creation of the remote collaborative environment, discussion and interactive introductions, and organization of information (McElrath and McDowell, 2008, pp 120–​123). Icebreakers, the oft-​maligned corporate engagement tool, were used to create interaction and synergy among students of different academic backgrounds and academic levels. These also served a potential role in helping students practise for future interview questions. Spanning the undergraduate, Master’s and PhD seeking levels, icebreaker questions brought the group together in discussion. These questions, occasionally inspired by corporate strategy (for example Indeed, 2020), focused on simple engagement (favourite dessert, TV show or pet peeve, first guests on a talk show), or questions related to academia (pros and cons of remote learning). This discussion often opened up the conversation in a number of ways, leading to human connections, even in a remote space, that seem to be often ignored within in-​person research groups. Through the focus on community building, the final portions of the meetings were dedicated to support and accountability check-​ins. The check-​ins served to build community through sharing small goals for individual professional development outside of the research group. This portion of the research group served to maintain –​and adapt –​professional goals in a time of crisis. Modelled on the popular writing accountability groups as a method for sustainable professional practices (for example as described by Skarupski and Foucher, 2018), this check-​ in served several purposes:  intentional declaration, community support and resource sharing.

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Reflect on the times and ethical considerations

The impacts of the pandemic are deeply rooted in social justice issues and the US is seeing the disparities in impact in racial and ethnic minority communities. While the virus can infect all humans, the COVID-​19 pandemic is known to have a disproportionate impact on certain groups. Whether this is the manifestation of racial disparities in the infections and deaths (Subbaraman, 2020) or overt racism against Asians or Asian-​ Americans (Tulshyan, 2020), these impacts are undoubtedly felt also in the educational sphere. The historical disparities –​historical racism, socio-​economic disparities, and the manifestation of systemic health disparities (Subbaraman, 2020) –​impact individuals and groups, research teams and research efforts. As such, individual and group reflection on the DEI research topics and experience is essential, particularly in a time of crisis. Research focused on DEI, particularly in public health and the health professions, also may be grounding. It can be a tangible way to make a difference in a small, academic corner of a much larger world. Most importantly, we were all humans first –​with respect to the COVID-​19 pandemic as well as overlapping crises –​and researchers second.

Conclusion

Whether the times are called ‘abnormal’, ‘difficult’, ‘unprecedented’, or any other number of adjectives, the results are the same:  crisis. In attempting to conduct DEI-​ focused research in a time of crisis, the overlapping issues of the COVID-​19 pandemic and the anti-​racism and anti-​ police brutality protests, it is essential to consider not only the research subject, but the purposes of the work and the researchers involved. As researchers, we are part of the communities –​academic or social –​which we are studying. We are impacted by the pandemic, as well as other social and environmental issues. Most importantly, we must acknowledge the impacts on ourselves and our teams as we do research both to understand and to make our community better.

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References Advisory Board to the President’s Initiative on Race (1998) One America in the 21st century: Forging a new future. Available at: https://​clintonwhitehouse2.archives.gov/​ I nitiatives/​ O neAmerica/​P IR.pdf [accessed: 21 September 2020]. Avila Segura, L., Feilen, K., and Yoho, R. (2018) ‘Creating a paradigm-​ shifting writing activity where students write for a purpose outside of the classroom’, The Original Lilly Conference on College Teaching, Oxford, Ohio. Belluigi, D., Czerniewicz, L., Khoo, S., Algers, A., Buckley, L.A., Prinsloo, P., Mgqwashu, E., Camps, C., Brink, C., Marx, R., and Wissing, G. (2020) ‘“Needs must”? Critical reflections on the implications of the Covid19 “pivot online” for equity in higher education’, Digital Culture and Education. https://​www.digitalcultureandeducation.com/​reflections-​on-​covid19/​needs-​must#. Bourke, B. (2014) ‘Positionality:  Reflecting on the research process’, Qualitative Report, 19(33). Brown, R.E. (2001) ‘The process of community-​building in distance learning classes’, Journal of Asynchronous Learning Networks, 5(2): 18–​35. Clark, K.R. and Vealé, B.L. (2018) ‘Strategies to enhance data collection and analysis in qualitative research’, Radiologic Technology, 89(5): 482CT–​485CT. Cooney, C.I. (2020) ‘The parents are not all right’, Medium. Available at:  https://​gen.medium.com/​parents-​are-​not-​ok-​66ab2a3e42d9 [accessed 30 July 2020]. Falkenberg, T. (2012) ‘Teaching as contemplative professional practice’, Paideusis, 20(2): 25–​35. Flaherty, C. (2016) ‘More faculty diversity, not on tenure track’, Inside Higher Ed. Available at:  https://​www.insidehighered.com/​news/​ 2016/​08/​22/​study-​finds-​gains-​faculty-​diversity-​not-​tenure-​track [accessed 30 July 2020]. Flaherty, C. (2020) ‘Next-​level precarity: Non-​tenure track professors and COVID-​19’, Inside Higher Ed. Available at:  https://​ www. insidehighered.com/​news/​2020/​04/​10/​next-​level-​precarity-​non-​ tenure-​track-​professors-​and-​covid-​19 [accessed 30 July  2020]. Gunnlaugson, O., Sarath, E.W., Scott, C., and Bai, H. (eds) (2014) Contemplative Learning and Inquiry across Disciplines, Albany, NY: SUNY Press. Indeed (2020) ‘30 icebreaker questions to use when meeting new people’, Indeed.com. Available at:  https://​ www.indeed.com/​ career-​advice/​finding-​a-​job/​icebreaker-​questions-​to-​use-​when-​ meeting-​new-​people [accessed 30 July 2020]. Jackson, C.L. (2020) ‘Food for thought:  Opportunities to improve diversity, inclusion, representation, and participation in epidemiology’, American Journal of Epidemiology. https://​doi.org/​10.1093/​ aje/​kwaa104. Jedd, T., Goldman, G., Henry-​Moss, D., Wagner, C.K., Lescak, E., Metcalf, J.L., Hufbauer, R., and Brander, S. (2020) ‘Representing 500 women scientists: Scientist mothers face extra challenges in the

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face of COVID-​19’, Scientific American Blogs. Available at: https://​ blogs.scientificamerican.com/​voices/​scientist-​mothers-​face-​extra-​ challenges-​in-​the-​face-​of-​covid-​19/​ [accessed 30 July  2020]. Lloyd, R. (2020) ‘Six ways to juggle science and childcare from home’, Nature. Available at:  https://​www.nature.com/​articles/​ d41586-​020-​01060-​x. McElrath, E. and McDowell, K. (2008) ‘Pedagogical strategies for building community in graduate level distance education courses’, MERLOT Journal of Online Learning and Teaching, 4(1): 117–​127. Minello, A. (2020) ‘The pandemic and the female academic’, Nature. Available at:  https://​www.nature.com/​articles/​ d41586-​020-​01060-​x. Myers, K.R., Tham, W.Y., Yin, Y., Cohodes, N., Thursby, J.G., Thursby, M.C., Schiffer, P., Walsh, J.T., Lakhani, K.R., and Wang, D. (2020) ‘Unequal effects of the COVID-​19 pandemic on scientists’, Nature Human Behaviour, 4: 880–​883. Puritty, C., Strickland, L.R., Alia, E., Blonder, B., Klein, E., Kohl, M.T., McGee, E., Quintana, M., Ridley, R.E., Tellman, B., and Gerber, L.R. (2017) ‘Without inclusion, diversity initiatives may not be enough’, Science, 357(6356): 1101–​1102. Sinkfield-​ Morey, T. (2018) ‘Diversity, inclusion, and storying: Connecting across cultures to give meaning to patients’ whole health’, Creative Nursing, 24(1): 12–​19. Skarupski, K.A. and Foucher, K.C. (2018) ‘Writing Accountability Groups (WAGs): A tool to help junior faculty members build sustainable writing habits’, Journal of Faculty Development, 32(3): 47–​54. Subbaraman, N. (2020) ‘Address the coronavirus’s outsized toll on people of color’. Scientific American. Available at: https://​www.scientificamerican.com/​article/​addressing-​the-​coronaviruss-​outsized-​ toll-​on-​people-​of-​color/​ [accessed 30 July  2020]. TIAA Institute (2016) Taking the measure of faculty diversity: Summary. Available at:  https://​www.tiaainstitute.org/​publication/​taking-​ measure-​faculty-​diversity [accessed 30 July 2020]. Tulshyan, R. (2020) ‘How to be an inclusive leader through a crisis’, Harvard Business Review. Available at:  https://​hbr.org/​2020/​ 04/​how-​to-​be-​an-​inclusive-​leader-​through-​a-​crisis [accessed 30 July 2020]. Tzanakou, C. (2020) ‘Unintended consequences of gender-​ equality plans’, Nature. Available at:  https://​www.nature.com/​articles/​ d41586-​019-​01904-​1 [accessed 30 July 2020]. Yoho, R.A., Coker, E., and Wood, E.A. (2020) ‘Reflections, considerations, and recommendations for teaching global health during a pandemic’. Under review, submitted May 2020. Zeichner, K.M. and Liston, D.P. (2013) Reflective Teaching:  An Introduction, New York: Routledge.

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Acknowledgements

Thank you to all of the undergraduate, Master’s and doctoral students working to make public health a more inclusive and welcoming space for all, and in particular, those University of Florida students working with me this summer on our DEI research. You are all what make teaching and research worthwhile and represent the best of what our fields have to offer.

4 Methodological and ethical considerations in the study on children’s everyday lives under COVID-​19 in three African countries: Ghana, Nigeria and South Africa Getrude Dadirai Gwenzi, Uchechi Shirley Anaduaka, Stephen Baffour Adjei, Ayomide Oladosu and Sarah Tara Sam Introduction

As an increasing number of countries across the globe face the unprecedented global crisis imposed by COVID-​19, it is clear that individuals’ everyday lives will be impacted for a long time to come. Nations have already experienced the closure of everyday institutions (kindergartens, schools, universities, offices and so on) and the impact of the restrictive lockdown measures to curb the spread of the virus. Locked up in our houses, our sense of time and space has been altered. Physical human contact is becoming highly restricted; something that we know is very important for emotional and psychological wellbeing. Children’s lives today are strongly influenced by global structures and trends (Allerton, 2016). Although children’s lives are predominantly studied at a much smaller scale, their everyday lives are shaped by processes that take place at a larger scale (Ansell, 2009). Hendrick (2008) argues that research with children has often included asking the adults in their lives and not the children themselves and the dominant narrative 48

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frames children as ‘vulnerable’. The sociology of childhood paradigm changed this view and argued that children have the right to be heard. The COVID-​19 lockdown, as with other global crises, presents such an opportunity to hear directly from children about their everyday lives. However, the restrictions of the COVID-​19 pandemic mean that studying children may require researchers to deploy methodologies that pose no or minimal threat to the lives of these children as well as their parents. This chapter describes the methods and ethical considerations in a study that examined children’s everyday lives during COVID-​19 in three African countries, namely Ghana, Nigeria and South Africa. The chapter will include a description of the methodology that was used in the three countries to gather children’s experiences during the lockdown. This will be followed by a discussion on the ethical considerations for the overall study, including examples from the three case studies. We will then discuss some challenges being faced by the researchers as they collect(ed) data. The chapter ends with some reflections about the choice of method that may be useful for future studies with children during crises and a conclusion. It is imperative to note that the study is still ongoing, hence the language used in some parts of the chapter will be prospective. Additionally, due to the focus on methodology, we will only discuss the methods and ethical considerations, but not the data themselves.

Experiences from Ghana, Nigeria and South Africa: methods, sampling and procedures

The three countries chosen for this study all announced nationwide lockdowns at the end of March 2020. The lockdown meant national restrictions on the movement of individuals, the shutdown of economic and social activities for social distancing purposes. Schools and child-​care facilities were closed and this began a period in which parents, caregivers and children were forced to be at home for some time. Table 4.1 details the estimated numbers of children

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who have already been affected by the closure of schools in the three countries chosen for this study. The numbers in Table 4.1 only depict the impact on education, however, COVID-​ 19 has impacted children’s lives in more ways than one. Although children are not the face of the pandemic, the expected socio-​economic impact is far worse for children than for adults, especially vulnerable children. In South Africa, the lockdown has moved from different levels which have lasted over three months and as of July 2020 is presently at Level 3, which has seen some reopening of economic activity and some children going back to school. In Ghana, a three-​week, full lockdown was imposed in Ghana’s epicentres of COVID-​19 and was lifted in April 2020, resuming most socio-​economic activities. In Nigeria, the lockdown saw the closure of schools from March to 31 August 2020. Due to the lockdown restrictions, research activities that require face-​to-​face interactions with participants have been limited significantly. The researchers thus chose the ethnographic diary method, using a combination of digital and traditional, written diaries, which was found to be appropriate due to the social distancing requirements. The online diaries minimize any risk of transmitting COVID-​19 from the researchers to the participants and vice versa. The diary method does not require physical contact with the participants. It has also been described as a systematic tool to

Table 4.1  Estimated numbers of children (in millions) who have been affected by nationwide lockdowns and school closures in Ghana, Nigeria and South Africa Country

Children in pre-​primary schools

Children in primary schools

Children in Junior High schools

Total

Ghana Nigeria South Africa

1.2 2 0.9

4.5 25.6 7.6

2.9 10.3 5

8.6 37.9 13.5

Source: UNESCO (2020).

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observe children’s daily lives in the home setting, which can be used intensively for a limited time (Lämsä et al., 2012). The diary has been highlighted as an important resource for recording events in their natural settings, to prevent the quality of the information from being forgotten over time (Butcher and Eldridge, 1990), and to minimize the delay between the event and the time recorded (Lavrakas, 2008). When the lockdown restrictions end completely and children resume their normal school and life activities, their experiences during the COVID-​19 lockdown may be lost to researchers. Sample population

The study includes children aged between 10 and 17 years of age, both male and female. The total population will include 44 children (Ghana = 14; Nigeria = 15; South Africa = 15). In South Africa, the sample will consist of children of migrant parents to provide a nuanced understanding of children’s lives during the COVID-​19 lockdown. Children of migrant parents are defined, in this study, as those children who were born to non-​South African parents or migrated to the country with their parents. They can be documented or undocumented. This group of children are to be differentiated from left-​ behind children and unaccompanied minors. The following section will now discuss the separate country case studies. Procedures Access to study participants

The initial activities included identifying the study participants and seeking out their consent. To access the children, advertisements will be shared on social media platforms (Facebook, Twitter, LinkedIn, Instagram and WhatsApp) to alert parents/​ caregivers who have children/​ wards who fit the study criteria. In addition, word-​ of-​ mouth adverts will be shared through personal connections and snowball sampling. In South Africa, due to the nature of the target population (children of migrant parents), specific groups of migrants on Facebook and other social media platforms are being targeted. The insider position of the researcher in

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South Africa as a migrant gives the advantage of easy access to these online groups. In addition, personal connections and snowball sampling are also used to access migrant parents from different countries. Seeking consent for participation

Following a response to the call, consent was sought by sending out informed consent forms and child-​ friendly descriptions of the research. The informed consent form also detailed the ethical considerations and ensured that children were able to understand what the study entailed. In Ghana, consent was sought via telephone. Recording children’s experiences

After explaining the purpose of the research, gaining parental consent and children’s assent, the participants were asked to record their experiences through digital voice recordings and/​ or written diaries. In Ghana, children were asked to record in their first language or mother tongue for approximately 7–​10 minutes. This was followed by 10–​12 minute recordings a couple of weeks after the lockdown was lifted. This was done to examine the long-​term impact of the lockdown. To direct their diaries and guide the selection of relevant events to report on, the children were asked how the crisis had impacted their lives in three specific areas: how they understood the COVID-​19 pandemic and its associated precautionary protocols; how the crisis has impacted their social and psychological experiences; and lastly how their educational needs and experiences have been affected by the crisis. In Nigeria, data collection has not commenced at the time of writing, but the same procedure is planned. The participants will be asked to provide daily diaries for seven days up to the time of ending the study, on their living experiences during the times of COVID-​19. To ensure that the children write without any undue pressure, no fixed format will be imposed on their writing. Additionally, they will be asked to write in any Nigerian language convenient for them (English, Pidgin or their mother tongue). They have the option to either write in notebooks using pen or pencil provided by the parents/​ guardian or type the text; then send in the diaries at the start of

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the next day or at the end of the seven-​day period via a secure email address or to a WhatsApp number with two-​ factor authentication to prevent online hackers from accessing the data. After receiving the diaries, these will be uploaded into a Google drive folder which can only be accessed by members of the research team. In South Africa, diaries/​ notebooks will be provided, via post, to the children whose parents provide consent, if parents cannot provide their own. Children are requested to write weekly for a period of up to six weeks and submit their diaries every week via post or via WhatsApp platform or emails. However, children are informed that they can stop writing at any time if they feel they are unable to continue or when they feel they have written enough. Parents play a crucial role in explaining to their children what is required of them during the study and being responsible for returning the diaries to the researchers.

Ethical considerations in the study

Ethical considerations were key in this study because it involves children, some of whom are children of migrant parents living in South Africa. Crowther (as cited in Crowther and Lausen, 2017, p 63) state that: ‘whenever we are conducting research it is impossible not to be concerned with the ethical dimensions of what we are doing. This is important for us as researchers not just for our own concerns but also because of the nature of the topic which we are researching.’ Like all research that deals with vulnerable human populations, ethical clearance has been sought from the appropriate ethical research committees in Hong Kong,1 Nigeria, Ghana and South Africa to conduct this research. One of the most heralded dilemmas faced by researchers working with children and youths entails finding a balance between their protection and participation; that is, how to enable the voices of the young to be heard without exploiting or distressing them, and to protect them without silencing and excluding them. To address this issue, the children are expected to write and/​or audio-​record their diaries using a pseudonym to protect their anonymity and

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those of their family and friends. This is especially important for the children of migrant parents in South Africa who may be undocumented. Children are also asked to provide their assent, in addition to parents’ consent. The target population is not a homogenous group. Further risks associated with researching children of migrant parents include the fact that some of them may live in precarious conditions. Space and consideration will be given to children who may not be able to write every day due to their living circumstances. While parents act as important gatekeepers to accessing the children population, during follow-​ups (if any), parents will be encouraged not to interfere with the writing activity. While ensuring anonymity and confidentiality, however, the children and their parents/​caregivers will be informed that any disclosure of abuse and/​or risk of harm will be reported to the appropriate authorities, after discussing with the children. Otherwise, the participants are made to understand that their information will not go further than this academic study and that their names will not be included in any publications that come out of the study. All possible measures are also being taken to keep the data safe, including deleting the audio recordings and disposing of written diaries as soon as the data are stored on a password protected personal computer.

Challenges

Preliminary findings from the study have shown that children are willing to participate in the study and they enjoy writing or recording the diaries. However, based on the pilot in Nigeria, there are expected challenges in diaries being sent to a wrong email or mistakenly broadcast to the wrong contacts. To deal with this issue, parents/​caregivers will be encouraged to assist the children to turn in the diaries and ensure they are shared to the appropriate contact provided in the invitation letter. Second, there is the tendency for parents/​caregivers to interfere with the responses of the children by writing for them. To address this, we encourage parents/​caregivers to allow the children to write freely.

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In Ghana, one of the major challenges faced so far has been the recall accuracy which may affect the reliability of the children’s reports. To help the children focus, and to elicit specific and guided content in order to minimize recall bias, we provided them with tailored prompts and thematic areas to respond to. We anticipate that a few children may be ‘coached’ by their parents in recording some of their experiences. We plan to exclude such information in the analysis of the data if we have strong reasons to believe that some aspects of the diaries may have been compromised. In South Africa, accessing the children of migrant parents is proving difficult due to fear from the parents to expose their children. Some parents have refused for their children to participate even after explaining that their details will be kept private. Previous studies with migrant populations have described challenges in reaching those without legal status (for example Cabieses et al., 2013) and they may be suspicious of researchers and may be unwilling to participate due to fear of being reported to the authorities and face deportation or discrimination. This is being remedied by increasing the channels through which migrant families can be reached, including social media platforms. We are also concerned about the possibility of parental influence in diary writing, as above.

Methodological reflections

The study is significant as it is one of very few studies in Africa that is investigating children’s experiences of the COVID-​ 19 lockdown. The study includes children in hidden and often unstudied populations such as children of migrant parents. The diary method offers ways to explore potentially sensitive issues surrounding children’s lives during the lockdown, including their relationships with parents and their psychological wellbeing. This may not have been achieved with other methods because some children may not be able to express themselves freely. Using the diary method, children could write and/​or make audio recordings as little or as much as they want, which does not add further strain to their lives under the current circumstances. The initial

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data collected in Ghana are clear and enriched with thick descriptions of children’s mundane social and psychological experiences under COVID-​19. In the case of South Africa, a few of the entries that were returned to the researchers during the pilot included incoherent text which necessitated some clarification. However, as the data collection continues, the diaries are clearly depicting children’s daily experiences, thoughts and emotions. The diary method is usually used together with other methods, such as in-​depth interviews (Liamputtong, 2007). Written diaries have the potential to produce incoherent texts, as in the case of South Africa described above. Additionally, even though recorded diaries were used in Ghana and potentially in Nigeria, they may also be inarticulate. In this study, follow-​ up telephone interviews have thus been necessary in some cases to clarify unclear responses such as incoherent text and unintelligible recordings.

Conclusion

The chapter discussed the use of diary methodology to study children’s experiences during the COVID-​19 lockdown in three countries: Ghana, Nigeria and South Africa. The method was found to be appropriate due to the social distancing requirements in all the countries included in the study. The choice of method has also given the researchers a glimpse into some sensitive issues being faced by children during the lockdown, including their thoughts and emotions. The chapter highlights the ethical considerations in conducting a study with children during the pandemic, which are similar to other studies with children. The researchers ensured children’s protection from harm, confidentiality and parental consent. The study also highlights the challenges researchers are facing when conducting studies with children.

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Note 1. Some of the researchers are based in Hong Kong and require ethical clearance from their affiliated universities.

References Allerton, C. (ed) (2016) Children:  Ethnographic Encounters (Vol. 1), London: Bloomsbury Academic. Ansell, N. (2009) ‘Childhood and the politics of scale: Descaling children’s geographies?’, Progress in Human Geography 33(2): 190–​209. Butcher, R. and Eldridge, J. (1990) ‘The use of diaries in data collection’, Journal of the Royal Statistical Society. Series D (The Statistician), 39(1): 25–​41. Cabieses, B., Tunstall, H., Pickett, K.E., and Gideon, J. (2013) ‘Changing patterns of migration in Latin America: How can research develop intelligence for public health?’, Revista Panamericana de Salud Pública, 34(1): 68–​74. Crowther, D. and Lausen, L. (eds) (2017) Handbook of Research Methods in Corporate Social Responsibility, Cheltenham:  Edward Elgar Publishing. Hendrick, H. (2008) ‘The child as a social actor in historical sources’, in Christensen, P. and James, A. (eds) Research with Children: Perspectives and Practices, Abingdon: Routledge, 40–​65. Lämsä, T., Rönkä, A., Poikonen, P.L., and Malinen, K. (2012) ‘The child diary as a research tool’, Early Child Development and Care, 182(3–​4): 469–​486. Lavrakas, P.J. (2008) Encyclopedia of Survey Research Methods, Los Angeles, CA: SAGE. Liamputtong, P. (2007) Researching the Vulnerable: A Guide to Sensitive Research Methods, London: SAGE. UNESCO (2020) Education:  From disruption to recovery. Available at:  https://​en.unesco.org/​covid19/​educationresponse [accessed: 14 July 2020].

5 Exploring young people’s experiences of growing-​up under COVID-​19 Leanne Monchuk, Laurie Day, Sara Rizzo and Barry Percy-​Smith

Introduction

With many countries still in some form of lockdown, young people stand to be affected by the COVID-​ 19 pandemic in quite specific ways. Children and young people’s voices have been notably absent in media coverage about COVID-​19. Measures are being proposed, but often with little consideration of the views and perspectives of young people (Fox, 2020). Research highlights the role and value of children in responding to crisis situations (Ray, 2010; Save the Children, 2015); however, little is known about children and young people’s roles specifically in major public health crises such as pandemics. This chapter draws on early lessons from an international longitudinal participatory research project involving young people as co-​researchers and experts in their own lives (Thomson, 2008; Abebe, 2009). The project seeks to understand the experiences and realities of young people living under COVID-​19 according to their own priorities, concerns and terms of reference and puts forward recommendations for how to promote young people’s wellbeing, rights and participation during and after the pandemic. The chapter focuses on the challenges (logistical and ethical) of engaging young people from seven countries in participatory action research while working entirely online. It provides an overview of the research methodology and outlines how young people were recruited to the project. At the time of writing (July 2020), this project is ongoing. 58

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Thus, we provide several reflections on our experience of designing an international study online and present a number of emerging findings.

The research approach

In keeping with the values of the research team, the study adopts a child and youth-​ centred, rights-​ based approach involving young people documenting and making sense of their own views and experiences while also undertaking their own research projects into their own interests, priorities and concerns. The project is informed and framed by three theoretical influences. First, a whole systems approach to inquiry (Burns, 2007) seeks to understand the dynamic interaction between COVID-​19 and young people in terms of multiple layers of contextual influence (Bronfenbrenner, 1979) that play out in children’s lived realities –​their family, peers, community, socio-​structural position, political economy and the virtual world. Second, an asset-​based child rights approach emphasizes the needs and rights of young people themselves and their central participation as active research partners. Third, a participatory action research approach has been adopted to ‘learn in action’ (Reason, 1988) with young people in the ‘real time’ of the pandemic as it continues. This involves cycles of inquiry and reflection with young people critically reflecting on stories and perspectives from experience (Reason and Bradbury, 2001; Torbert, 2004; Percy-​Smith et al., 2019) with their peers and, together with professional researchers, analysing and making sense of their findings. Wider stakeholders (parents, professionals, policy makers) will in turn be engaged in considering implications of emerging findings for informing strategies for action. The study is being conducted over 18 months1 and involves a longitudinal ethnographic design incorporating ongoing youth-​ led inquiries providing in-​ depth qualitative insights during and after the pandemic. A total of 70 participant action researchers aged 14–​18 were recruited as co-​researchers across all locations (ten each from Italy, Lebanon and Singapore and 40 from the UK ensuring representation from England,

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Wales, Scotland and Northern Ireland) and supported by a wider virtual network of young people. An international approach was adopted to juxtapose young people’s realities within the UK, with those of their peers from Italy, at the epicentre of the European outbreak; Singapore, where the SARS outbreak is still within memory; and Lebanon, where a fragile civil society and quarantine for refugee children have particular implications for the pandemic. These countries were pre-​ selected to reflect contextual differences in the political and cultural backdrop to the crisis; varying public health responses; and different cultures regarding child rights and political representation. The project is being facilitated by nine experienced researchers and managed by the four authors (two of whom are researchers leading groups of youth researchers). The project is overseen by a dedicated international Advisory Group. The Advisory Group includes experts from arenas such as safeguarding, child protection, children’s rights, children’s digital environments and participatory action research. It aims to help steer the project, offer a critical overview of its components (such as research tools) and provide expert advice and oversight on safeguarding and ethical considerations. Young people are also represented within the Advisory Group with four youth advisors from England, Germany, Greece and Italy. The youth co-​researchers are involved in three substantive waves of data collection. First, country research panels seek to bring the co-​researchers together to discuss themes and share and critically reflect on their thoughts/​ experiences and perspectives on political and public health responses within each country. This includes both synchronous and asynchronous communication utilizing a range of media and combining virtual panel meetings and ongoing interactions via an online discussion forum to help document participants’ responses to the crisis, decision making and behaviours. Each panel is overseen and supported by an experienced researcher. Second, the research team are supporting the co-​researchers to undertake action research to explore their own lines of inquiry and capture their lived experience in any way they feel is appropriate (such as keeping a diary, taking photographs, interviewing friends, reviewing and commenting on news

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items and so on). This ensures that their voice is meaningfully captured, heard and disseminated. Third, one-​to-​one semi-​ structured interviews are conducted with each young co-​ researcher by an adult researcher to understand their individual lived experiences. At the time of writing, the young people have completed the dedicated action research training that was provided by the researchers and have commenced their action research project. The first wave of interviews and online reflective group discussions (where the co-​researchers come together to collectively reflect on and make sense of themes and issues arising from their research) are yet to be conducted.

Recruitment process

Recruiting young participants was carefully considered to ensure the engagement of a wide and diverse group. Calls for participants were designed with attention to language requirements, ages and developmental stages and shared via a combination of social media, non-​governmental organizations (NGOs), public authorities, established forums/​ youth councils and organizations representing specific groups (such as black, Asian and minority ethnic [BAME], or young carers). Participants were invited to submit a short written or audio/​visual application to provide details about themselves, how they had been impacted by the pandemic, and why they were keen to be involved. We received 152 applications, and a stratified purposive sampling framework was utilized to shortlist young people from diverse socio-​economic backgrounds and experiencing a variety of personal circumstances. Attention was paid to gender, ethnicity, housing type, geography (urban, rural, large/​small town), family structure and health conditions, as well as specific groups (including lesbian, gay, bisexual, transgender, queer or questioning and intersex [LGBTQI] and care-​ experienced young people) and whether the applicant had parents in vulnerable groups or were key workers. These categories are not mutually exclusive, and the interplay between social context, public health discourses and

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vulnerability is central to understanding the implications of the current crisis for child rights. As with any social research project, ethics had to be carefully considered throughout the design of the project including safeguarding, risk issues and informed consent through remote interaction. Informed consent was requested from all young people (and parents/​ carers where the young person was under 16). Then a comprehensive screening process commenced (via video call) to ensure the young person’s suitability to engage with the project and that they had access to the relevant technological equipment and a quiet space for the research/​ interviews. As the project is longitudinal, the researchers also sought to confirm the young person’s initial commitment to the 18-​ month study, while being cognizant of educational and family commitments and that factors such as bereavement or illness may hinder their involvement or result in their withdrawal from the research. Participants were reminded that the researchers had a duty of care to the young person and all researchers received a detailed briefing on how to report any issues or concerns to the project management team.

Providing support and getting going

Once the formation of the country panels was confirmed, the young people were invited to attend two video conference calls. The first sought to introduce the co-​ researchers to one another and provided a further opportunity to outline the aims and objectives of the project. Aware that this first meeting may have been daunting for the young people, an ice-​ breaking activity was used where each young person was asked to introduce themselves and to show an object or discuss something that represented their experience of the pandemic. The importance of acknowledging and respecting each other’s ideas, views and experiences was discussed, along with co-​creating ground rules for engagement to help support respectful and caring dialogue with and between young people. Each panel was introduced to an online portal, which is used as a means of communication and to capture the young people’s ongoing dialogue and commentary. Young

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people were informed that this forum was to be used in a supportive manner and that all comments/​posts would be monitored by the researcher. During this call, the researcher attempted to determine the optimum mode and frequency of engagement, to retain the young person’s interest while appreciating other demands on their time. The second video conference call constituted initial research training and discussed principles and approaches in action research and involved young people discussing initial ideas for their own research projects. Drawing upon the work of Kara (2015), a young person’s action research guide was produced (and translated) to introduce methods that could be used including traditional methods such as surveys, interviews and secondary data analysis alongside more innovative creative and artistic forms such as artwork, crafts, embroidery, video diaries and photography. These materials were introduced as a reference point and source of ideas upon which young people could draw to shape their chosen inquiry, while avoiding the risk of ‘manualizing’ the action research process through an overly prescriptive approach. The project team were keen to ensure that all other young people who had shown interest in the project, but were not recruited for any of the panels, were still involved in research. We therefore established a wider network of young people to engage at specific times in reflective discussions to respond to emerging findings in relation to their own experiences and to inform decisions regarding messages for dissemination. They are also engaged in designing and developing a dedicated project website, logo and e-​zine. The e-​zine is essentially a project newsletter update which is put together by two of the young people from the network with relevant experience as youth reporters. In addition, this research network provides an opportunity to recruit engaged young people into the panels, should any panel member choose to withdraw.

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Emerging themes and reflections on conducting research during a pandemic

As stated above, the project is in the early stages of data collection. To date, emphasis has been placed on recruiting and forming the panels, research training and getting participants started on their research journeys. Key topics are emerging from the action research both within and across the country panels. These include discussions of the impact of the pandemic on the environment; trust between politicians and the public; experiences of young people with learning disabilities; health inequalities; those with pre-​existing health conditions; the education system (having classes online, exam results being calculated by teachers, returning to school and socially distancing); the public’s interpretation and compliance with social distancing measures; local versus national lockdowns; eating and exercise; how the pandemic has been managed. Methods the young people have utilized for recording thoughts, observations and reflections of living during COVID-​19 include: surveys; interviews; observations; photography; video diaries; voice notes; embroidery; journaling; drawing; illustrations; and secondary data analysis. As the project is reliant on successfully engaging young people remotely across a large geographic area and managing the cross-​cultural dimensions to the study, regular internal project communication is imperative. Regular meetings are held to discuss progress, methods and matters arising across the panels with ongoing learning from practice in the tradition of action research. One of the challenges faced has concerned the choice of online platform to support the young people interacting as an online community together with the researcher. The online networking platform Yammer was selected as it is General Data Protection Regulation (GDPR) compliant and does not require any personal contact information to be shared. While all participants have access to the platform, the level of usage has varied. Some panels, and some young people on different panels, readily engage and interact in the platform, while some do not. This presents issues for the research team in ensuring those not so active are not marginalized in the process. Feedback from

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the researchers suggests that some young people are not confident to share their work in this domain and instead wish to send this directly to their researcher, while others would prefer to use an app with which they are more familiar (such as WhatsApp or Telegram) for generalized social networking. This created some tensions between balancing privacy and GDPR compliance issues with young people’s preferences for different online platforms, with a need to set personal and ethical boundaries in the context of young people carrying out research. Second, a key issue running through the project concerns the role of the researcher in seeking the balance between providing structure, guidance and support while simultaneously creating spaces for the young people to engage in self-​ determined inquiry and creative expression with respect to what is meaningful in their own individual contexts. For many co-​researchers this is the first time they have been involved in a research project, and some demonstrated the need for regular assistance and assurance from their adult researcher. Third, as researchers we are always considering how we regularly obtain informed consent from the young people involved. There is a careful balance in maintaining a level of engagement that does not overburden participants yet provides us with assurance that the young people are well, still able to commit to the project and engage with the action research. While the project aims to explore the impact of the COVID-​19 pandemic on young people, it is clear that this situation is continually shifting, and the young people themselves are constantly changing in terms of physical and mental wellbeing, new experiences and so on so enthusiasm and motivation to partake in this longitudinal study may fluctuate. In addition to understanding the emerging findings from this longitudinal ethnographic action research approach, we as researchers are learning experientially about the efficacy of using such an approach with young people, remotely and online. An overarching principle behind our use of this approach is the imperative of ongoing participant engagement in inquiry, reflection, dialogue and collaborative sense making

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as a democratic ‘engaged research’ process. To date, we have learnt that the young people are keen for the opportunity to express their thoughts and feelings during this period. They have embraced the opportunity to be involved in an international project and demonstrated several creative ways through which they wish to express their experiences of growing up under COVID-​19. These challenges and opportunities will be explored further as the project evolves over the coming months. At the time of writing, the researchers are preparing for a series of in-​depth one-​to-​one interviews with the young people; online reflective group discussions at which the preliminary action research outputs will be shared and discussed; and a cross-​country learning event for the young people from all participating counties, prior to the publication of a first report in the autumn of 2020.

Note 1. The study began in April 2020 and is funded by the Nuffield Foundation:  www.nuffieldfoundation.org/​project/​growing-​up-​ under-​covid-​19. The views expressed in this chapter are those of the authors and do not necessarily reflect the views of the Foundation.

References Abebe, T. (2009) ‘Multiple methods, complex dilemmas: Negotiating socio-​ ethical spaces in participatory research with disadvantaged children’, Children’s Geographies, 7(4): 451–​465. Bronfenbrenner, U. (1979) The Ecology of Human development: Experiments by Nature and Design, Cambridge, MA: Harvard University Press. Burns, D. (2007) Systemic Action Research: A Strategy for Whole System Change, Bristol: Bristol Policy Press. Fox, E. (2020) ‘COVID-​19 and the need for youth voices’, UK Youth, 30 April. Available at:  https://​www.ukyouth.org/​2020/​04/​30/​ covid-​19-​and-​the-​need-​for-​youth-​voices/​ [accessed: 22 July  2020]. Kara, H. (2015)  Creative Research Methods in the Social Sciences:  A Practical Guide,Bristol: The Policy Press. Percy-​ Smith, B., Cuconato, M. Reutlinger, C., and Thomas, N.P. (2019) ‘Action research with young people: Possibilities and “messy

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realities” discourse’, Youth and Childhood Research: Special Issue on New Methods in Youth Research, 3: 255–​270. Ray, P. (2010) ‘The participation of children living in the poorest and most difficult situations’, in Percy-​Smith, B. and Thomas, N. (eds) A Handbook of Children and Young People’s Participation: Perspectives from Theory and Practice, London: Routledge, pp 63–​72. Reason, P. (ed) (1988) Human Inquiry in Action: Developments in New Paradigm Research, London: SAGE. Reason, P. and Bradbury, H. (eds) (2001) A Handbook of Action Research, London: SAGE. Save the Children (2015) What do children want in times of emergency and crisis? They want an education. Available at:  https://​ www. savethechildren.org/​content/​dam/​global/​reports/​education-​and-​ child-​protection/​what-​children-​want.pdf [accessed: 24 July  2020]. Thomson, P. (2008) Doing Visual Research with Children and Young People, London: Routledge. Torbert, W. (2004) Action Inquiry: The Secret of Timely and Transforming Leadership, San Francisco, CA: Berrett-​Koehler Publishers.

6 Ensuring no voices are left behind: the use of digital storytelling and diary writing in times of crisis Nicola Jones, Kate Pincock, Bassam Abu Hamad, Agnieszka Malachowska, Sally Youssef, Sarah Alheiwidi and Kifah Bani Odeh Introduction

When COVID-​19 spread to the Middle East and North Africa (MENA) region, it became clear that government responses including lockdowns, school closures and social distancing measures would have a significant impact on adolescent lives. A lack of basic services and restrictions on work meant the most vulnerable households struggled to meet basic needs such as food and healthcare. Limited mobility and increased intra-​household violence were also a concern, especially for girls and young women. At a community level, limited social cohesion between refugees and host communities is fraying further. Gender and Adolescence:  Global Evidence (GAGE) is a longitudinal research project that began in 2015, looking at what works to enhance adolescent capabilities and empowerment across low-​and middle-​ income countries, including three contexts in the MENA region (Jordan, Lebanon and the Gaza strip). The GAGE methodology includes in-​depth interviews, focus groups and participatory research activities that are traditionally undertaken face to face; driven by the COVID-​ 19 pandemic, a range of virtual qualitative methodological tools were introduced by 68

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researchers. This chapter reflects on the significance of an ‘ethic of care’ in research undertaken in crisis contexts, and the practical and ethical strengths this principle lent to digital storytelling and audio and written diaries.

Background: virtual methods and young people

The COVID-​ 19 pandemic has generated exceptional circumstances for research in lower-​and middle-​ income countries, with traditional face-​ to-​ face methods no longer viable nor ethically justifiable. Yet understanding the impact of the pandemic on young people in these contexts is essential for knowing how to target effective support. Innovative strategies have therefore been needed in order to be able to continue research with vulnerable young people. The growth and use of the internet by young people in the MENA region has been well documented (Gunter et al., 2016), as has the way that interaction with technologies such as smartphones, tablets and other devices shape young people’s engagement with their physical and social surroundings (Ergler et al., 2016). Recognizing that these same virtual technologies can also be deployed to capture the contemporary lived experience in ways that may resonate with young people, a growing body of work explores the utility, ethical challenges and considerations around virtual and online qualitative methods (Ardoin et al., 2016; Ergler et al., 2016; Volpe, 2019). However, virtual methods such as digital storytelling and diaries have not been widely utilized within research with young people in the MENA region. Where tools such as participatory photography, storytelling and diaries have been used to explore sensitive issues with adolescents in other lower-​and middle-​ income contexts it has usually been face to face, rather than at a distance through virtual means (see Chakraborty, 2009; Dakin et al., 2015). Yet given both the prevalence of virtual technology use in the MENA region, and the circumstances presented by the COVID-​19 pandemic, GAGE researchers sought to adapt and virtualize existing participatory research tools already being used within the GAGE programme. These include a digital storytelling

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tool where young people take photographs to use as a starting point for reflective discussions about their experiences of the pandemic; and a diaries tool; structured around open-​ended question prompts to help young people to outline their daily experiences and to express their experiences, feelings and reflections on different issues. The latter can be either written or recorded according to adolescents’ preference and literacy capabilities. Virtual methods may hold benefits for research with vulnerable populations and for exploring sensitive issues. For example, interacting without a face-​to-​face component may help participants feel freer to communicate their ideas and true feelings (Adams-​Hutcheson and Longhurst, 2017; Sipes et al., 2019); it can also allow participants to respond in a space that they feel comfortable in, where they may have more privacy (Hanna, 2012) and participants may feel more able to opt out and end or exit conversations without face-​ to-​ face interaction (Hanna and Mwale, 2017). Research using digital storytelling and diaries with young people may be empowering and affirming, positioning young people as interpreters of events (Worth, 2009; Heron and Steckley, 2020) and potentially creating space for them to reflect on and overcome difficult experiences (To et al., 2014). Such methods can also be adaptable for use with young people with disabilities (Worth, 2009). Taking participatory methods with young people online, however, also presents new challenges, especially when researching already marginalized populations. One of the major concerns relating to virtual diaries is the delay in collecting material, which results in a lack of opportunity for researchers to identify whether respondents are upset and need support (Mupambireyi and Bernays, 2019). Young people may not have their own phone or own space where they can speak or write in private, particularly in the context of a pandemic lockdown which sees families confined to the home. In the context of GAGE research, these tools were used by researchers who had already built in-​person relationships with respondents, and we suggest that this has been key to managing these concerns. Extant work has reflected on the

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strengths of longitudinal research for building relationships of rapport and trust with young people and helping them to talk about their feelings in difficult circumstances (Morrow and Crivello, 2015). Yet what happens to this dynamic when these relationships are moved online has hitherto remained unexplored. Indeed, compassionate and caring relationships with researchers may be particularly relevant to young people in times of crisis; such as that represented by the pandemic, in which they are alienated from other support networks.

Methodology: GAGE virtual research with vulnerable adolescents

Between April and June 2020 GAGE carried out virtual research with vulnerable adolescents in Gaza, Jordan and Lebanon, the majority of whom were already part of a longitudinal participatory research sample. The research team had a pre-​ existing relationship with most of these young people, including negotiating the participation of the adolescents with parents, and in the case of married girls, with husbands and/​or parents-​in-​law who would expect to consent to their research participation. The overarching objective was to explore young people’s short-​term perceptions and experiences of the COVID-​19 pandemic and ensuing policy response through a mix of semi-​structured phone interviews, digital storytelling and diary writing. For more details see Malachowska et al., 2020a. Table 6.1 presents the research sample for each country.

Findings: strengths and challenges of virtual qualitative research

Overall, we found that the diaries and digital storytelling methods were useful complementary approaches to the virtual interviews, but there were significant differences in their resonance and efficacy with different groups of young people. These differences unfolded around gender, age, marital and disability status; they were also shaped by pre-​existing relationships with researchers, with adolescents in Jordan and

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Table 6.1  Research sample by sex, marital status, disability, age and country context Jordan

Gaza strip

Lebanon

Total

Female Male Married

28 10 12

33 23 5

29 22 12

90 55 29

Never married Disability Hearing, visual and physical Age 10–​14 15–​19

26

51

39

116

20

7

–​

27

–​ 38

18 38

–​ 51

18 127

Sex Marital status

Lebanon having communicated with researchers face to face for several years prior to the onset of the pandemic. Diary writing

In diary use there was a strong gender divide –​girls overwhelmingly opted to participate in this method, whereas boys did not. Adolescent girls explained that culturally it is more likely for girls to be involved in reading and writing as a means of self-​expression. Young adolescent girls in Gaza also felt the diary writing gave them relief from the multi-​layered stresses they were experiencing during the lockdown. Discussions with adolescent girls also suggested that the appeal of the diaries stemmed from the fact that girls’ limited mobility due to conservative gender norms (Presler-​Marshall et al., 2017a, 2017b) had been compounded during the lockdowns. Hence the diaries provided an outlet to articulate their findings about the challenges of social isolation. A 19-​ year-​old Palestinian refugee adolescent girl explained:  “It is hard for me to talk about my problems and how I am feeling on the phone, but I feel it is easier when I write them.” Adolescent boys, by contrast, continued to enjoy some degree of mobility and had opportunities to interact with peers even

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during the lockdowns (Hamad et al., 2020; Malachowska et al., 2020b). The diary modality was also appealing for adolescent girls, and especially some married girls, who underscored intensified care and domestic work burdens during the lockdown. This meant that carving out time to participate in phone interviews was challenging, whereas diaries could be used in the late evenings when they had some private time. A 17-​year-​old married Syrian refugee girl in Lebanon emphasized:  “I cannot say everything on the phone … the problems increased at home … Now that we are writing diaries, I will tell you about it in the diary and delete from the phone after I send it to you.” It is worth noting, however, that not all adolescent girls found the diary tool accessible. In Jordan participants noted that they were not accustomed to writing diaries and had concerns about whether the material would remain confidential. They expressed being subject to high levels of surveillance in the household by fathers and brothers, reflecting deeply embedded norms related to family honour. Several girls were also reluctant to share their own stories because they felt that intra-​household challenges and tensions should remain within the household. A 14-​year-​old girl, from Gaza, explained for example: “I don’t want our own issues spread outside my home.” For other young people, while the diary tool was appealing in principle, it proved to be less rich as a data generating tool due to limited writing capacities. Outside of reading the Quran, highly vulnerable stateless Palestinian adolescent girls in Gaza noted that they have very few opportunities to read literature or to write for themselves, and thus they were very new to diary writing. These limitations were especially evident with young people with hearing and visual impairments in our sample, who had had limited quality educational opportunities due to a dearth of specialist and/​or inclusive education services in their context.

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Digital storytelling

Our findings suggested that while digital storytelling using participatory photography techniques was more appealing across genders, girls were more willing to use the tool to reflect on their feelings. As an 18-​ year-​ old Lebanese girl explained: Corona’s time made us explore our talents. I started to meditate by watching the sky and photographing it. Taking daily photos of the sky became my hobby … When I started taking these pictures, it gave me a feeling of comfort as it is a beautiful view, so I loved the idea and kept doing it.

Digital storytelling was also more effective in generating rich data among adolescents in Lebanon and Jordan with whom the GAGE researchers had established, ongoing relationships –​and where participants already had some familiarity with the approach because of its prior use as a face-​to-​face method. For example, we found adolescent boys were more comfortable discussing more objective, superficial topics such as their COVID-​19 prevention activities and the structure of their days under lockdown. Boys took more performative photos in Gaza but were also less comfortable discussing their emotions in the other contexts, where there was a better understanding of the purpose of the participatory photography to elicit these. Where relationships had been built between research participants with hearing impairments and their families, digital storytelling was also greatly appreciated as a means of self-​expression, not least because communication barriers even within the household were identified as a key area of concern of these adolescents. The digital stories provided young people with a constructive platform to process and document their emotions during the challenges of the lockdown and helped them to express more sensitive issues that are often stigmatized, including anxiety and depression. A 16-​ year-​ old adolescent girl from Gaza refugee camp in Jordan used the digital storytelling exercise to open up about the shame she felt when her neighbours refused to lend her family money to cope with the lack of work: “My

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mother asked for money from our neighbour woman but she refused, I felt so sad and angry but I did not tell my mother, I am happy to outlet these heavy feelings here.” With digital storytelling there were also challenges regarding access to and use of technology, particularly for girls from more conservative communities, and due to economic constraints. A 13-​year-​old girl from Deir Al Balah Camp in Gaza noted for example: “I have a problem; I don’t own a personal mobile. I wish I had a personal phone to document my experiences.” Similarly, in Gaza Camp in Jordan, out of 13 adolescent girl participants only four had access to a mobile phone, and even these girls noted that they were under strict surveillance regarding its use by family members. In the same vein, a 19-​ year-​ old adolescent girl in Gaza city explained that she was not able to participate in the digital storytelling because:  “Our families, don’t allow us to share our photos especially when we get older.”

Concluding remarks

Our experience doing research during the COVID-​ 19 lockdowns was that virtual tools worked particularly well where there were previous relationships to build upon, and when participants were given the flexibility to use methods according to their own time and space constraints –​to use diaries in their own time, to take photos of their own spaces, to set boundaries on interview parameters. For particularly vulnerable young people, a demonstrable ethic of care was key to supporting engagement with these tools. It was also critical to allow flexibility across the range of tools so that adolescent girls could opt in or out so as to navigate restrictive gender norms. Moreover, while the tools generated rich data on balance, an ethic of care was also demonstrated through attention to the process –​in other words, adolescents were made to feel that their engagement in the methodological process as a space for self-​expression outside the home was as important as the specific insights generated. This invokes a feminist ‘ethic of care’ in which emphasis is placed on relationships

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with and responsibilities towards communities of concern (Gilligan, 1982; Mohanty, 2003). These caring dynamics supported adolescents in both participating in research, and in developing resilience in coping with the effects of the pandemic on their lives. Finally, data generated through these interactions uniquely underlines the growing marginalization faced by the most vulnerable adolescents in the context of COVID-​19 lockdowns. These findings emphasize the urgent need for age-​ , gender-​and disability-​responsive policies and programme interventions.

References Adams‐Hutcheson, G. and Longhurst, R. (2017) ‘“At least in person there would have been a cup of tea”: Interviewing via Skype’, Area, 49(2): 148–​155. Ardoin, N.M., Digiano, M., O’Connor, K., and Holthuis, N. (2016) ‘Using online narratives to explore participant experiences in a residential environmental education program’, Children’s Geographies, 14(3): 263–​281. Chakraborty, K. (2009) ‘The good Muslim girl:  Conducting qualitative participatory research to understand the lives of young Muslim women in the bustees of Kolkata’, Children’s Geographies, 7(4): 421–​434. Dakin, E., Parker, S., Amell, J., and Rogers, B. (2015) ‘Seeing with our own eyes:  Youth in Mathare, Kenya use Photovoice to examine individual and community strengths’, Qualitative Social Work, 14(2): 170–​192. Ergler, C.R., Kearns, R., Witten, K., and Porter, G. (2016) ‘Digital methodologies and practices in children’s geographies’, Children’s Geographies, 14(2): 129–​140. Gilligan, C. (1982) In a Different Voice:  Psychological Theory and Women’s Development, Cambridge, MA: Harvard University Press. Gunter, B., Elareshi, M., and Al-​Jaber, K. (2016) Social Media in the Arab World: Communication and Public Opinion in the Gulf States, London and New York: I.B. Tauris. Hamad, S., Abu Hamra, E., Diab, R., Abu Hamad, B., Jones, N., and Małachowska, A. (2020) Listening to Young People’s Voices under Covid-​19:  Exploring the Impacts of Covid-​19 on Adolescents in the Gaza Strip, Policy Brief, London: Gender and Adolescence: Global Evidence. Hanna, P. (2012) ‘Using internet technologies (such as Skype) as a research medium:  A research note’, Qualitative Research 12(2): 239–​242.

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Hanna, P. and Mwale, S. (2017) ‘“I’m not with you, yet I am…”: Virtual face-​to-​face interviews’, 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 256–​274. Heron, G. and Steckley, L. (2020) ‘Digital storytelling using co-​ production with vulnerable young people’, Journal of Social Work, 20(4): 411–​430. Malachowska, A., Jones, N., Abu Hamad, B., Al Abbadi, T., Al Almaireh, W., Alheiwidi, S., Bani Odeh, K., Iyasu, A., Gebre, Y., Gezahegne, K., Guglielmi, S., Mitu, K., Pincock, K., Rashid, S., Saleh, M., Sultan, M., Tilahun, K., Workneh, F., Yadete, W., and Youssef, S. (2020a) GAGE Virtual Research Toolkit: Qualitative Research with Young People on their Covid-​19 Experiences, London:  Gender and Adolescence: Global Evidence. Małachowska, A., Al Abbadi, T., Al Amaireh, W., Banioweda, K., Al Heiwidi, S., and Jones, N. (2020b) Listening to Young People’s Voices under Covid-​19:  Exploring the Impacts of Covid-​19 on Adolescents in Jordan’s Refugee Camps and Host Communities, Policy Brief, London: Gender and Adolescence: Global Evidence. Mohanty, C.T. (2003) Feminism without Borders: Decolonizing Theory, Practicing Solidarity, Durham, NC: Duke University Press. Morrow, V. and Crivello, G. (2015) ‘What is the value of qualitative longitudinal research with children and young people for international development?’, International Journal of Social Research Methodology, 18(3): 267–​280. Mupambireyi, Z. and Bernays, S. (2019) ‘Reflections on the use of audio diaries to access young people’s lived experiences of HIV in Zimbabwe’, Qualitative Health Research, 29(5): 680–​692. Presler-​Marshall, E., Gercama, I., and Jones, N. (2017a) Adolescent Girls in Jordan:  The State of the Evidence, London:  Gender and Adolescence: Global Evidence. Presler-​Marshall, E., Jones, N., and Gercama, I. (2017b) Adolescent Girls in Lebanon:  The State of the Evidence, London:  Gender and Adolescence: Global Evidence. Sipes, J.B.A., Roberts, L.D., and Mullan, B. (2019) ‘Voice-​only Skype for use in researching sensitive topics: A research note’, Qualitative Research in Psychology. DOI: 10.1080/​14780887.2019.1577518. To, S., So, Y., and Chan, T. (2014) ‘An exploratory study on the effectiveness and experience of a parent enhancement group adopting a narrative approach’, Journal of Social Work, 14(1): 41–​61. Volpe, C. (2019) ‘Digital diaries:  New uses of PhotoVoice in participatory research with young people’, Children’s Geographies, 17​ (3): 361–​370. Worth, N. (2009) ‘Making use of audio diaries in research with young people: Examining narrative, participation and audience’, Sociological Research Online 14(4): 9.

7 Using ICT to research maternal, newborn and child health during the COVID-​19 pandemic in Nigeria Osasuyi Dirisu, Godwin Akaba and Eseoghene Adams

Introduction

Research remains vital to realizing the Sustainable Development Goals (SDGs) (Fayomi et al., 2018), however it may be hampered by unexpected crises. Reducing global maternal mortality to less than 70 per 100,000 live births, neonatal mortality to 12 per 1,000 live births and under-​five mortality rates to 25 per 1,000 live births are key SDG targets for 2030 (WHO, 2018). Improving access to quality maternal, newborn and child health (MNCH) services is central to achieving these targets. Despite progress in reducing maternal and neonatal mortality, Nigeria still contributes significantly to the global burden of maternal deaths, accounting for the highest proportion of stillbirths, pregnancy-​related deaths and neonatal mortalities worldwide. In 2017, Nigeria accounted for almost a quarter of maternal deaths globally –​the highest of any country that year (World Bank, 2019). Addressing factors affecting the continuum of care from antenatal (ANC), delivery and postnatal care (PNC) remains critical (Yasuoka et al., 2018). Low MNCH services utilization can be attributed to two types of factors:  user factors and health system factors. User factors include distance to health facility, cultural beliefs, practices and economic factors. Health system factors include competence and attitude of healthcare 78

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providers, infrastructure and equipment and organization of the health system (Kisiangani et al., 2020). MNCH is often disproportionately affected by conflicts, natural disasters and pandemics. On 11 March 2020, COVID-​19 was declared a global pandemic by the World Health Organization (WHO) (WHO, 2020), with devastating health and social consequences (Hausmann, 2020). Nigeria recorded the first confirmed case in sub-​Saharan Africa (SSA) on 27 February 2020. The virus spread to all 36 states, with almost 45,000 confirmed cases and 900 deaths at the time of writing (NCDC, 2020). Concerns arise that pandemic control in Africa will be difficult owing to the lack of a skilled health workforce; lack of suitable equipment, infrastructure and amenities; insufficient funding and poor governance (Kapata et al., 2020). Preventive and containment measures such as travel bans, school closures, lockdowns and bans on large gatherings were instituted in many of Nigeria’s states (Adegboye et al., 2020). However, these measures were rendered ineffective by factors relating to poverty, food insecurity, overcrowded housing and absence of basic amenities, making compliance with social distancing difficult (Adegboye et al., 2020). Essential health service workers could travel to work, but encountered poor transportation access, harassment by officials enforcing lockdown compliance and a lack of personal protective equipment (PPE) and other essential supplies. Another potential problem was health worker absenteeism due to fears of coronavirus infection (Penn-​ Kekana, 2020). There are speculations that decreased access to MNCH services due to COVID-​19 restrictions may create a greater spike in maternal and newborn deaths in countries like Nigeria (Penn-​Kekana, 2020), where prior to COVID-​19, millions of women already suffered from poor access to quality MNCH services. When the pandemic struck, disruptions to the demand and supply of MNCH services were anticipated. When combined with poor nutrition and food insecurity, the impact on MNCH outcomes can be devastating (Graham et al., 2020; Roberton et al., 2020). Already fragile health systems in low-​ and middle-​income countries threaten to be overwhelmed. Disruptions or outright suspensions of MNCH programmes

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may undermine previous achievements in MNCH, nutrition and development (Cooper, 2020). Simultaneously providing essential services along the continuum of care and responding effectively to the COVID-​ 19 pandemic is challenging (Nadu, 2020). Research on the impact of COVID-​19 on MNCH services is crucial for developing policies to sustain the few gains that have been made in Nigeria. Traditional approaches to research, currently threatened by COVID-​19 lockdowns and restrictions, need to be adapted using e-​health technologies. The need to keep exploring factors affecting the utilization of MNCH services is well understood; however, safety and ethical restrictions constrain the conduct of research during a pandemic. Reflecting on how to adapt the conduct of research led to exploring greater use of information communication technology (ICT) in the study design to evaluate MNCH service utilization. This chapter discusses the use of ICT in resource-​poor settings (in Nigeria) to facilitate data collection, ethics and collaboration processes.

Considerations for a mixed-​methods study

Mixed-​ methods research combines elements of qualitative and quantitative research approaches to attain depth, rigour and corroboration (Johnson et al., 2007). Four major types of mixed-​ methods designs are triangulation design, embedded design, explanatory design and exploratory design (Tashakkori and Creswell, 2007). The triangulation design (convergent parallel design) is the best-​ known approach to mixing methods. It has the benefit of enabling researchers to obtain different but complementary data towards understanding a shared research problem, reconciling differing strengths and non-​overlapping weaknesses of quantitative methods (Tashakkori and Creswell, 2007). While quantitative study design has advantages of large sample size, ability to identify trends and generalization of findings, its lack of detail and depth and non-​consideration of contextual factors can be mitigated by qualitative components.

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These advantages informed the selection of the triangulation design to explore MNCH services. A mixed-​methods study was therefore designed to evaluate the effects of COVID-​ 19 restrictions and lockdowns on the utilization of MNCH services across six Nigerian states, with a view to exploring contextual differences in lockdown enforcement.

Conceptual framework: the three delays model

Delays in accessing healthcare can be viewed as occurring in three phases (Thaddeus and Maine, 1994; Thorsen and Sundby, 2012). The three delays model (see Figure 7.1) provides a framework for understanding factors that contribute to MNCH morbidity and mortality, particularly in low-​and middle-​income countries (Barnes-​Josiah et al., 1998; Mwaniki et al., 2016). The research team considered the three delays model appropriate for exploring the impact of COVID-​19 restrictions on uptake of MNCH services. These are the three phases of delayed access to healthcare: • Phase I delay:  delay in deciding to seek care. This comprises individual or familial factors such as socio-​ cultural or economic factors, illness characteristics and perceived quality of care. • Phase II delay:  delay in reaching healthcare facility. This includes distance to health facilities, transportation costs, availability of transportation and poor road networks. • Phase III delay:  delay in receiving adequate care at the health facility. This includes facility response time, shortage of supplies or equipment, competence of available personnel, adequacy of referral system and quality of care.

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Figure 7.1  Summary of the three delays model

Quantitative design aspects

Trends in utilizing MNCH services in the pandemic can be assessed by examining service utilization before, during and after lockdowns. Public health sector services in Nigeria operate at three levels: (1) primary healthcare; (2) secondary healthcare; and (3) tertiary healthcare. To understand the dynamics and gaps in service delivery, referral and the MNCH continuum of care, it is crucial to assess service utilization at all three levels. Important MNCH variables include antenatal clinic attendance, hospital deliveries, postnatal clinic attendance, family planning services and immunization uptake. Identifying research collaborators at each site obviates the need for travel, since routine data can be collected and emailed to a central server for analysis. Quantitative service data are considered rapid and efficient to obtain and analyse, even during a pandemic (Lazzerini et al., 2020; Liu et al., 2020). They provide a useful means to identify opportunities to improve service delivery, highlight gaps and inform decision making (LaFond et al., 2003). The simple comparison of service data can ascertain key trends in service utilization across intervention states at the three levels of public healthcare service delivery in Nigeria.

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Qualitative design aspects

Exploring contextual factors that shape service utilization, barriers and facilitators of access to MNCH services (during the COVID-​ 19 lockdown) requires conversations with a wide range of stakeholders, including policy makers, service providers and service users –​all playing a critical role in the demand and supply of MNCH services. Policy makers are healthcare practitioners involved in shaping policy and practice. Service providers comprise healthcare professionals who work within the health system providing MNCH care to service users who consist of women and their newborns. Considerations around the preferred approach were based on logistic and ethical feasibility. In-​depth interviews were preferred over focus group discussions (FGDs) to avoid physical gatherings. Phone interviews and online meeting platforms were considered the most feasible for safely conducting interviews. Phone interviews or online meeting platforms eliminate the need for travel, save time, are cost efficient, provide safety for researchers and study participants and allow participants to remain anonymous (Musselwhite et al., 2007; Irvine, 2010). The recent increase in phone interviews has been facilitated by social change, technological advances and the increased use and acceptability of telecommunications to support healthcare (Carr and Worth, 2001).

Operationalizing the data-​collection strategy

Ensuring the research teams’ and participants’ safety during a pandemic, particularly in low-​ resource settings, requires logistically feasible and realistic research methods (Musselwhite et al., 2007). Poor communications infrastructure, including roads, make research planning in Nigeria challenging. As travel restrictions sealed airports and closed interstate land borders, planning research became even more daunting. Nonetheless, researchers have ethical responsibilities to protect the study team and participants. Data-​ collection strategies must comply with movement restrictions and social distancing

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requirements and try to eliminate the need for contact and travel by facilitating virtual meetings.

Ethical considerations

Key ethical considerations include the vulnerability and safety of research and study teams, as well as obtaining Institutional Review Board (IRB) approvals. Research ethics rests on three fundamental principles of respect for persons, beneficence and justice. Vulnerability considers the risks and benefits of persons participating in the research study, and their physical, mental and social states, which may be adversely affected in times of crisis. The basic principles of respect and concern for the rights and welfare of individual research participants and collective research communities remain paramount. Justice and fairness must be maintained in research design and implementation (Ballantyne and Eriksson, 2019). IRB approvals are mandatory prior to the conduct of research in Nigeria; however, approvals processes may have been affected or delayed by the pandemic. It takes, on average, three to six months to obtain national ethical approval.

Challenges and possible mitigation strategies

Developing a country-​level, multi-​centre collaborative piece of research without physical brainstorming sessions required a paradigm shift for researchers to accept virtual meetings as effective engagement strategies. Setting up calls and scheduling meetings across the country required investment in high quality internet services; however, these are limited in some states. During times of crisis, accessing participants is challenging, especially in rural communities and hard-​ to-​ reach areas. In such times, motivation to participate in research is low. Participants may not have ready access to mobile phones, and network connection might be inconsistent. Lack of access to non-​verbal cues and environmental contextual factors during phone interviews place limitations on phone-​based research.

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However, this can be overcome by complementing phone calls with visual technology when possible, as well as by training interviewers to sensitize them to participants’ pauses and signs of reflection (Carr and Worth, 2001; Musselwhite et al., 2007). Researchers can mitigate the challenge of phone non-​ response by patiently following up with text messages and setting up more suitable times. Keeping interview questions simple, clear and concise helps to maximize participants’ attention span.

Conclusion

Researching in pandemic situations requires researchers to be adaptable and ready to review and adjust their strategies to satisfy safety and ethical considerations. Researchers should view the challenges they encounter as opportunities to find ways to inventively engage research participants and generate evidence. Underlying the COVID crisis is an evolving MNCH ‘slow crisis’, reflecting the unpreparedness of the Nigerian health system to provide routine MNCH care. This quickly became subsumed in preoccupations with the COVID-​19 ‘fast crisis’. Although disruptions in MNCH care were anticipated, research in this area remains critical as there are important implications for policy and practice.

References Adegboye, O.A., Adekunle, A.I., and Gayawan, E. (2020) ‘Novel coronavirus in Nigeria:  Epidemiological analysis of the first 45 days of the pandemic’, medRxiv. https://​doi.org/​10.1101/​ 2020.04.14.20064949. Ballantyne, A. and Eriksson, S. (2019) ‘Research ethics revised: the new CIOMS guidelines and the World Medical Association Declaration of Helsinki in context’, Bioethics, 33(3): 310–​311. Barnes-​Josiah, D., Myntti, C., and Augustin, A. (1998) ‘The “three delays” as a framework for examining maternal mortality in Haiti’, Social Science & Medicine, 46(8): 981–​993. Carr, E.C.J. and Worth, A. (2001) ‘The use of the telephone interview for research’, NT Research, 6(1): 511–​524.

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Cooper, K. (2020) ‘Don’t let children be the hidden victims of COVID-​ 19 pandemic COVID-​ 19’, Statement, 9 April, New York: UNICEF, pp 1–​8. Fayomi, O.S.I., Okokpujie, I.P., and Udo, M. (2018) ‘The role of research in attaining sustainable development goals’, in IOP Conference Series: Materials Science and Engineering, 413: 012002. Graham, W.J., Afolabi, B., Benova, L., Campbell, O.M.R., Filippi, V., Nakimuli, A., Penn-​ Kekana, L., Sharma, G., Okomo, U., Valongueiro, S., Waiswa, P., and Ronsmans, C. (2020) ‘Protecting hard-​ won gains for mothers and newborns in low-​ income and middle-​income countries in the face of COVID-​19: call for a service safety net’, BMJ Global Health, 5(6): 1–​5. Hausmann, R. (2020) Flattening the COVID-​ 19 curve in developing countries, The World Economic Forum COVID Action Platform. Available at:  https://​www.project-​syndicate.org/​commentary/ ​ f lattening- ​ c ovid19- ​ c urve- ​ i n- ​ d eveloping- ​ c ountries- ​ b y-​ ricardo-​hausmann-​2020-​03?barrier=accesspaylog [accessed:  20 September 2020]. Irvine, A. (2010) ‘Using phone interviews’, Morgan Centre, University of Manchester. Johnson, R.B., Onwuegbuzie, A.J., and Turner, L.A. (2007) ‘Toward a definition of mixed methods research’, Journal of Mixed Methods Research, 1(2): 112–​133. Kapata, N., Ihekweazu, C., Ntoumia, F., Raji, T., Chanda-​ Kapata, P., Mwaba, P. et al. (2020) ‘Is Africa prepared for tackling the COVID-​19 (SARS-​CoV-​2) epidemic? Lessons from past outbreaks, ongoing pan-​African public health efforts, and implications for the future’, International Journal of Infectious Diseases, 93: 233–​236. Kisiangani, I., Elmi, M., Bakibinga, P., Mohamed, S.F., Kisia, L., Kibe, P.M., Otieno, P., Afeich, N., Nyaga, A.A., Njoroge, N., Noor, R., and Ziraba, A.K. (2020) ‘Persistent barriers to the use of maternal, newborn and child health services in Garissa sub-​county, Kenya:  a qualitative study’, BMC Pregnancy and Childbirth, 20(1): 1–​12. LaFond, A., Kleinau, E., Shafritz, L., Prysor-​ Jones, S., Mbodj, F., Traore, B., Dembele, E., Gueye, M., Bouare, M., and Snow, C. (2003) Using data to improve service delivery:  a self-​ evaluation approach, May, Bamako, Mali: CERPOD, pp. 1–​158. Lazzerini, M., Barbi, E., Apicella, A., Marchetti, F., Cardinale, F., and Trobia, G. (2020) ‘Delayed access or provision of care in Italy resulting from fear of COVID-​19’, The Lancet Child & Adolescent Health, 4(5): e10–​e11. Liu, Q., Luo, D., Haase, J.E., Guo, Q., Wang, X.Q., Liu, S., Xia, L., Liu, Z., Yang, J., and Yang, B.X. (2020) ‘The experiences of health-​ care providers during the COVID-​ 19 crisis in China:  a qualitative study’, The Lancet Global Health. https://​doi.org/​10.1016/​ S2214-​109X(20)30204–​7. Musselwhite, K., Cuff, L., McGregor, L., and King, K.M. (2007) ‘The telephone interview is an effective method of data collection in clinical nursing research:  a discussion paper’, International Journal of Nursing Studies, 44(6): 1064–​1070.

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Mwaniki, M.K., Baya, E.J., Mwangi-​Powell, F., and Sidebotham, P. (2016) ‘“Tweaking” the model for understanding and preventing maternal and neonatal morbidity and mortality in low income countries: inserting new ideas into a timeless wine skin’, BMC Pregnancy and Childbirth, 16(1): 1–​9. Nadu, T. (2020) ILO sectoral brief, COVID-​19 and the health sector, April. Available at:  https://​www.ilo.org/​wcmsp5/​groups/​public/​ -​-​-​ed_​dialogue/​-​-​-​sector/​documents/​briefingnote/​wcms_​741655. pdf [accessed 23 September 2020]. NCDC (2020) An update on COVID-​ 19 outbreak in Nigeria, COVID-​19 Situation Report 159, 5 August, Nigeria Centre for Disease Control. Available at:  https://​ ncdc.gov.ng/​ diseases/​ sitreps/​? cat=14&name=An%20update%20of%20COVID-​19%20 outbreak%20in%20Nigeria [accessed 23 September 2020]. Penn-​ Kekana, L. (2020) ‘Updates:  Newborn and perinatal health COVID-​ 19 resources:  beyond the models, what are we hearing from countries?’, HNN, pp 1–​6. Available at: https://​www.healthynewbornnetwork.org/​ r esource/​ c ovid-​ 1 9-​ a nd-​ m nch-​ b eyond-​ the-​models-​what-​are-​we-​hearing-​from-​countries/​ [accessed:  20 September 2020]. Roberton, T., Carter, E.D., Chou, V.B., Stegmuller, A.R., Jackson, B.D., Tam, Y., Sawadogo-​Lewis, T., and Walker, N. (2020) ‘Early estimates of the indirect effects of the COVID-​19 pandemic on maternal and child mortality in low-​income and middle-​income countries: a modelling study’, The Lancet Global Health, 8(7): e901–​e908. Tashakkori, A. and Creswell, J.W. (2007) Exploring the Nature of Research Questions in Mixed Methods Research, Los Angeles, CA: SAGE. Thaddeus, S. and Maine, D. (1994) ‘Too far to walk: maternal mortality in context’, Social Science & Medicine, 38(8): 1091–​1110. Thorsen, V.C. and Sundby, J. (2012) ‘Piecing together the maternal death puzzle through narratives:  the three delays model revisited’, PloS one, 7(12): e52090. WHO (2018) Maternal mortality 19, September, 1–​5. WHO (2020) Rolling updates on coronavirus disease (COVID-​ 19). Available at:  https://​www.who.int/​emergencies/​diseases/​novel-​ coronavirus-​2019/​events-​as-​they-​happen [accessed: 30 April  2020]. World Bank (2019) Trends in maternal mortality:  2000 to 2017 estimates. Available at: http://​documents.worldbank.org/​curated/​en/​ 793971568908763231/​Trends-​in-​maternal-​mortality-​2000-​to-​ 2017 [accessed: 8 October 2019]. Yasuoka, J., Nanishi, K., Kikuchi, K., Suzuki, S., Ly, P., Thavrin, B., Omatsu, T., and Mizutani, T. (2018) ‘Barriers for pregnant women living in rural, agricultural villages to accessing antenatal care in Cambodia: a community-​based cross-​sectional study combined with a geographic information system’, PloS one: 13(3).

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8 Piling on the pressure? Negotiating burden/​benefit dynamics in social research during times of crisis Oliver Hooper, Rachel Sandford and Thomas Quarmby

Introduction

At a time when governments globally are making major decisions in response to the coronavirus (COVID-​ 19) pandemic, there has perhaps never been greater need for robust research evidence to support rapid decision-​making processes. While the pandemic is understandably perceived as a health crisis, Teti et al. (2020, p 1) contend that ‘COVID-​19 is not just a medical pandemic; it is a social event that is disrupting our social order’. Certainly, coronavirus has had a huge impact on the way we live our lives, particularly with regard to the way we work, learn and communicate with others. As such, research is needed that can speak not just to medical matters but also to social change (Ward, 2020). Social researchers have responded readily to such need and we have witnessed a plethora of online surveys –​among various other forms of research –​emerging. These have sought to explore the impact of the crisis on various aspects of society and individuals’ lives. However, while much of this research has undoubtedly been done with good intentions, our own recent experiences have led us to reflect on the moral challenges of conducting research during times of crisis. In particular, we have found ourselves questioning whether the desire for rapid research –​to understand the changing context –​means that researchers might not have adequately considered 91

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the potentially detrimental impact of their research on the contexts within which they are working. Moreover, we have reflected on whether the changing research landscape means some voices are now heard above others and, if so, what the implications of this might be for those on the margins. Within this chapter, we discuss these issues and contest that we need to consider how beneficial research might be during times of crisis and whether the perceived benefit offsets/​outweighs the potential burden that might be placed on those participating, especially if they are already under pressure, working in ‘challenged’ contexts.

Challenged contexts

There are various contexts within the UK that might be deemed ‘challenged’ –​systems and services which were already under pressure long before the current crisis, with the pandemic having served only to further exacerbate these pressures. Examples include healthcare services such as the National Health Service (NHS) or education systems. Certainly, the former has needed to reconfigure many of its services to deal with the overwhelming number of COVID-​19 cases, requiring a significant expansion of intensive care capacity, with many medical professionals having to work outside of their area of speciality to support the response. Meanwhile, the latter have had to facilitate a rapid transition to remote teaching and learning for the majority of pupils, while needing to remain open for the children of key workers and those deemed ‘vulnerable’. An additional example –​of particular interest to us, given our previous work in this area (see Sandford et al., 2019; Quarmby et al., 2020) –​is the children’s social care system in England. Within England, the children’s social care system is responsible for just over 400,000 children at any one time, with more than 75,000 of these children being ‘in care’ (Ofsted, 2019). Responsibility for these children is devolved over 152 local authorities, each tasked with ensuring the effective delivery of social care services in their respective area. While overall effectiveness continues to improve –​with 46 per

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cent of provision judged by Ofsted to be good or outstanding in 2019 –​there remains much work to be done, with 41 per cent of provision deemed to require improvement and 13 per cent inadequate (Ofsted, 2019). The 75,000 children who are ‘in care’ are often considered to be some of the most vulnerable in England (Department for Education, 2020) and, worryingly, the numbers of children entering care are rising. A recent report by the Children’s Commissioner for England (2019) highlighted that with rising numbers of children entering the care system, ‘cash-​strapped’ local authorities are finding it increasingly difficult to provide stable placements for vulnerable young people who have, for various reasons, been removed from their family and placed in the care of the state. Evidently, the system was facing challenges prior to the coronavirus pandemic and these have undoubtedly been amplified by the current crisis. The children’s social care system in England is a complex space, occupied by many stakeholders, from government through to local authorities as well as various agencies and charities. Within our own research, we have argued that this has significant implications for care-​experienced young people’s lives and contributes to the creation of ‘complex social landscapes’ that they must navigate on a daily basis (Sandford et al., 2019). While the impact of the coronavirus pandemic on this system is, as yet, undetermined, there are early indications that those ‘on the front line’ are facing considerable challenges. Research conducted by Community Care, for example, found that many social workers (77 per cent) felt that the adaptations necessitated by the pandemic had significantly impacted their ability to carry out their role, while most (90 per cent) felt that the pandemic had had a detrimental effect on those for whom they are responsible (Turner, 2020a). Allied to this, 71 per cent of those working in children’s social care stated that their workload had increased as a result of the pandemic (Turner, 2020b). It is not surprising, therefore, that various researchers have sought to engage with this context to provide what they perceive to be (and which arguably is) much-​needed evidence about the impacts of the pandemic to support decision making around potential interventions. However, our own engagements with

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this context at this time also demonstrate that such research –​ albeit acknowledged as well intentioned –​may not necessarily be welcomed. During the early stages of the coronavirus pandemic we were actively encouraged by our institutions to consider what research we might engage in to explore the impacts of the crisis. Consequently, we contacted a key research partner –​a leading charity working with, and for, care-​experienced youth –​to enquire whether we might be able to usefully support their work at this time through research. The response was respectful but certain –​while the offer was welcomed, the organization was too ‘stretched’ to be able to commit to research at this time. It was evident that the best thing we could do to support the charity was to leave them to their (demanding) day-​ to-​ day work. Having acknowledged the pressure they were under, we accepted that now was not an appropriate time to be engaging these partners in additional research activity. Interestingly, anecdotal conversations with peers suggested that we were not alone in this experience. On further reflection, we came to recognize that such ‘thanks but no thanks’ responses from research partners necessitated more careful consideration of how we, as researchers, could –​and should –​approach research with those who are under pressure during times of crisis and, moreover, required us to give considerable thought to the ethical dimensions of such work.

Critical considerations for research during crises

There are many considerations that researchers must attend to when preparing to undertake a research project –​from the research questions that will guide it, to the methods they will use to generate data, as well as the analytical approach they will employ. Of particular importance during these preparations, and throughout all phases of the research process, are ethical considerations. Noteworthy in this regard are the five ethical principles for social research outlined by the Academy of Social Sciences (2015). These highlight that social science is central to democratic societies and that, as such, social

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research should be inclusive of difference and respectful of individuals, groups and communities. Further, they point to the need for social science research to have integrity and for social scientists to be cognizant of their social responsibilities when undertaking research. The final principle is particularly important as it reminds us that ‘social science should aim to maximise benefit and minimise harm’ (Academy of Social Sciences, 2015, p 1). Evidently, ethics should not simply be a matter of robust processes and procedures but also beneficial aims and results. Ethical processes and procedures are, however, something that social researchers must navigate in pursuit of beneficial results. These processes and procedures are often valuable in further refining a research project but can be rather complex and intricate undertakings, with institutional ethics routinely involving many elements in addition to a research proposal (for example risk assessments, data management plans, safeguarding procedures and so on). Ethical processes and procedures require consideration across the breadth of social research, but we know from our own experience that there are often particular ethical complexities inherent in research involving children and young people –​especially those who are perceived to be particularly ‘vulnerable’ (Goredema-​ Braid, 2010; Sandford et al., 2010). We know, therefore, that gaining ethical clearance can be time consuming, even during ‘normal’ times. During the coronavirus pandemic, we have witnessed a rise in what might be termed ‘fast-​track’ ethics –​whereby institutions seek to facilitate rapid turnarounds in the ethical review process in order to support timely research. While many would claim to subject ethics proposals to the same level of scrutiny as before the pandemic, questions must be asked of the rigour and integrity of such processes when many more applications are being reviewed in a much shorter timeframe. We know all too well how extended the ethical review process can be –​we have, at times, been frustrated by this ourselves. However, such processes and procedures serve an important purpose –​they ensure that what we are doing is ethical not only from our own perspective but from that of others. As noted above, they help us to refine our research projects, likely

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resulting in more considered approaches which generate more insightful data. Ethical review processes are time consuming because they require care. Therefore, while studies might be gaining approval through ‘fast-​track’ ethical review processes, we must consider the potential implications. It may be that while such studies meet the ‘minimum standards’ required, valuable opportunities to further refine studies are being lost in the interest of haste. It is not only the ethical review processes whose speed has hastened on account of the pandemic, the pace at which research projects are being conducted has similarly accelerated. Concurrently, we have undergone a mass migration of research from physical to digital spaces. Although steadily growing over the past decade or so, digital approaches to social research seem to have experienced a period of significant growth over the past few months, inevitably influenced by the restrictions in place on account of the pandemic. There are undoubtedly benefits to conducting social research within digital spaces –​it can be more convenient, require fewer resources and cost less (Bryman, 2012). Further, at the present time, digital approaches have provided a much-​ needed means of conducting research –​research which may otherwise have been postponed or cancelled on account of the aforementioned restrictions. Certainly, there are many studies that are conducive to being conducted (rapidly) online –​large-​scale population surveys, for example –​and we have witnessed much ingenuity with researchers endeavouring to embrace digital methods to research the effects of the pandemic in creative ways (for example blogs, video diaries, WhatsApp chats). However, we argue that while such research has a place, there is much research that is not so conducive to being conducted rapidly and/​or online. Social research is a relational process which often involves establishing and maintaining relationships over time. While certain methods, such as digitally mediated interviews on Skype or Zoom, might facilitate social research, we question the extent to which they support the important relationship-​ building work that social researchers routinely undertake. Researcher–​ participant relationships can be particularly important when conducting research in challenged contexts

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–​such as within children’s social care systems –​and with ‘vulnerable’ youth, such as those who are care experienced. This is not to say that the relational aspect of social research is unproblematic, nor without critique. Certainly, questions have been raised with regard to the ‘commodification of rapport’ in social research, whereby comparatively privileged researchers seek to build relationships with ‘vulnerable’ participants with the intention of using their position of power to exert undue influence on them (Duncombe and Jessop, 2012). However, we know from our own research experiences that care-​experienced young people are well accustomed to ‘official adults’ entering and leaving their lives and that they often consider these engagements to be tokenistic. Therefore, from our perspective, building relationships (over time) is important for ensuring participants’ meaningful involvement in research. The contexts we have referred to within this chapter each have a service that they must provide –​be that healthcare, education or social care –​and, at this time, ‘business continuity’ is paramount even if it is not ‘business as usual’. It is perhaps unsurprising, therefore, that such contexts may be unable or unwilling to engage in social research at present. However, there are consequences that arise from these systems and services being inaccessible to researchers that warrant consideration. We have witnessed a ‘closing of doors’ within these challenged contexts as staff (for example healthcare professionals, teachers, social workers) –​who act as gatekeepers to research –​find themselves otherwise engaged in responding to the pandemic. These staff should not be blamed for having taken such measures; they are seeking to ensure that they can maintain their service and protect those for whom they are responsible. However, in doing so, there is a risk of quietening and even silencing voices. These can be some of the most ‘vulnerable’ voices –​especially within the context of children’s social care –​meaning some may be unable to share their perspectives and experiences at this troubling time. Paradoxically, these ‘vulnerable’ voices are perhaps those we most need to hear when considering interventions and responses to the pandemic. Therefore, a

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critical consideration for researchers must be:  whose voices are being privileged at this time and whose are not?

Conclusion

Social research has much potential to make a positive contribution to the response to the coronavirus pandemic (Ward, 2020). However, we argue that, during times of crisis, we need to consider the potentially problematic nature of research given the burden that it might place on contexts –​ particularly those which are ‘challenged’. We are not alone in our reflecting on the dilemmas of conducting social research during times of crisis. Gardner (2020) candidly discusses the challenges of undertaking social research during the coronavirus pandemic, particularly when research participants are key workers, employed in contexts that are likely to be under pressure. She notes that the lockdown period caused her not just to consider how to adapt her research methods to comply with regulations but also to question the value and relevance of her research in the prevailing climate. As she acknowledges, ‘concerns for adapting my original design to comply with social distancing restrictions were rapidly overtaken by concerns regarding the continued relevance of my research’ (Gardner, 2020, para 2). Similarly, Jowett (2020, para 5) acknowledges that there are ‘complex ethical issues to consider when thinking of conducting research during a global pandemic’ and advises those seeking to undertake social research to consider, in particular, whether being engaged in research would cause participants any additional –​and avoidable –​stress. Researchers must, therefore, consider the potential benefits of such research and determine whether it has the potential to meaningfully benefit participants –​ameliorating the situation in which they find themselves as a result of the crisis. Otherwise, researchers may risk being exploitative in their research and, albeit perhaps unintentionally, fail to act morally –​something which is a central tenet of ethical research. Researchers have an obligation to act in the best interests of their participants and the contexts within which they work and should not

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be tempted to pursue opportunities that further their own research agendas at the expense of others, particularly during times of crisis. Rather, researchers must approach research sensitively, taking care to limit the burden placed on contexts, ensuring that participants’ voices are appropriately facilitated and, ultimately, being responsible enough to acknowledge and accept when research might simply not be fitting.

References Academy of Social Sciences (2015) Five ethics principles for social science research. Available at:  https://​www.acss.org.uk/​wp-​content/​ uploads/​2016/​06/​5-​Ethics-​ Principles-​for-​Social-​Science-​ Research-​Flyer.pdf [accessed: 29 July 2020]. Bryman, A. (2012) Social Research Methods (4th edn), Oxford: Oxford University Press. Children’s Commissioner for England (2019) Pass the Parcel: Children Posted around the Care System, London:  Children’s Commissioner for England. Department for Education (2020) Outcomes for Children Looked After by Local Authorities in England, 31 March 2019, London: Department for Education. Duncombe, J. and Jessop, J. (2012) ‘“Doing rapport” and the ethics of “faking friendship”’, in Miller, T., Birch, M., Mauthner, M., and Jessop, J. (eds) Ethics in Qualitative Research (2nd edn), London: SAGE, pp 108–​121. Gardner, B. (2020) ‘Challenges of doing research in a pandemic:  Reframing, adapting and introducing qualitative  methods’, [Weblog] IJSRM Blog, 17 June. Available at:  https://​ijsrm. org/​2020/​06/​17/​challenges-​of-​doing-​r esearch-​in-​a-​pandemic-​ reframing- ​ a dapting- ​ a nd- ​ i ntroducing- ​ q ualitative-​ m ethods/​ [accessed: 29 July 2020]. Goredema-​ Braid, B. (2010) ‘Ethical research with young people’, Research Ethics, 6(2): 48–​52. Jowett, A. (2020) ‘Carrying out qualitative research under lockdown:  Practical and ethical considerations’, [Weblog] LSE Impact Blog, 20 April. Available at:  https://​ blogs.lse.ac.uk/​ impactofsocialsciences/​2020/​04/​20/​carrying-​out-​qualitative-​research-​under-​ lockdown-​practical-​and-​ethical-​considerations/​ [accessed:  29 July 2020]. Ofsted (2019) Children’s social care in England in 2019:  National statistics. Available at:  https://​www.gov.uk/​government/​publications/​childrens-​social-​care-​data-​in-​england-​2019/​childrens-​social-​ care-​in-​england-​2019 [accessed: 29 July  2020]. Quarmby, T., Sandford, R., Hooper, O., and Duncombe, R. (2020) ‘Narratives and marginalised voices: Storying the sport and physical activity experiences of care-​experienced young people’, Qualitative

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Research in Sport, Exercise and Health. https://​doi.org/​10.1080/​ 2159676X.2020.1725099. Sandford, R., Armour, K., and Duncombe, R. (2010) ‘Finding their voice:  Disaffected youth insights on sport/​physical activity interventions’, in O’Sullivan, M. and MacPhail, A. (eds) Young People’s Voices in Physical Education and Youth Sport, London:  Routledge, pp  65–​87. Sandford, R., Quarmby, T., Hooper, O., and Duncombe, R. (2019) ‘Navigating complex social landscapes:  Examining care experienced young people’s engagements with sport and physical activity’, Sport, Education and Society. https://​doi.org/​10.1080/​ 13573322.2019.1699523. Teti, M., Schatz, E., and Liebenberg, L. (2020) ‘Methods in the time of COVID-​19: The vital role of qualitative inquiries’, International Journal of Qualitative Methods. https://​doi.org/​10.1177/​ 1609406920920962. Turner, A. (2020a) ‘Most social workers say Covid-​19 has negatively hit their work and the lives of those they support’, [Weblog] Community Care, 28 May. Available at:  https://​ www.communitycare.co.uk/​ 2020/​05/​28/​social-​workers-​say-​coronavirus-​negatively-​affected-​ services-​people-​they-​support/​ [accessed: 29 July  2020]. Turner, A. (2020b) ‘Social work under coronavirus: Children’s practitioners report bigger problems than adults’ colleagues’, [Weblog] Community Care News, 4 June. Available at:  https://​ www. communitycare.co.uk/​ 2 020/​ 0 6/​ 0 4/​ s ocial-​ w ork-​ c oronavirus-​ childrens-​practitioners-​report-​bigger-​problems-​adults-​colleagues/​ [accessed: 29 July 2020]. Ward, P. (2020) ‘A sociology of the Covid-​19 pandemic: A commentary and research agenda for sociologists’, Journal of Sociology. https://​ doi.org/​10.1177/​1440783320939682.

9 Keep Talking: messy research in times of lockdown Nicola Gratton, Ryan Fox and Teri Elder Introduction

Shared experiences, informal conversations, and team activities, through which community researchers navigate the research process as a team, lie at the heart of participatory action research (PAR) (McIntyre, 2008; Gratton and Beddows, 2018). However, as the COVID-​ 19 pandemic shocked communities around the globe and introduced periods of ‘lockdown’ and physical distancing, many community-​based projects were forced to adjust to new, remote ways of working or temporarily pause their engagement. This chapter outlines how a participatory research project adjusted to the COVID-​19 lockdown and imposed physical distancing regulations. We show how the initial ambitions to replace face-​ to-​ face meetings with remote research activities were re-​evaluated and replaced with creative and less structured activities designed to promote wellbeing and connect the group during unprecedented times. The chapter concludes with a discussion of the benefits of the adapted approaches, drawing on a small number of interviews with the community research team, and identifies how moving to a messier approach to research resulted in unexpected outcomes for the group.

Keep Talking

Keep Talking is a research project funded by UKRI’s Enhancing Partnerships for Place-​Based Engagement fund 101

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in 2020, led by Staffordshire University in partnership with Expert Citizens CIC. The project aims to develop a model for sustainable structures for community research to engage members of the public with meaningful, place-​based research. Staffordshire University has a long history of working in partnership with communities to better understand the issues affecting communities through the Get Talking approach to PAR (Emadi-​Coffin, 2008; Hetherington, 2015; Gratton and Beddows, 2018; Gratton, 2019). Get Talking supports a team of community researchers, often made up of people most impacted by the topic of research, to take a full and active role in the research process. The approach also embraces creativity, utilizing creative techniques in planning, consultation and dissemination of findings to ‘remove many of the challenges of engaging wider communities as research participants and generate deliberative dialogue around the topics being explored’ (Gratton and Beddows, 2018, p 147). Keep Talking builds on our learning from previous Get Talking projects. Community researchers from Get Talking Hardship (Gratton et al., 2019), a PAR project to understand the experiences and challenges of people living with hardship in Stoke-​on-​Trent, and members of Expert Citizen CIC, a team of people with lived experience of multiple disadvantage, who support services to improve care for citizens, formed a new group of co-​researchers for Keep Talking. Keep Talking was supported by a small project team: a lead researcher with overall management responsibility for the project, a research assistant with responsibility for data gathering and analysis, and a project assistant, who played the role of ‘connector’, ensuring community researchers were able to access all aspects of the research project. Impacts of COVID-​19

With the introduction of UK physical distancing regulations and lockdown measures in March 2020, significant adjustments were made to Keep Talking. Before this both Expert Citizens and Get Talking community researchers had met, once a week, to contribute to the research data. All sessions had been face to face, participatory and had utilized

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creative engagement techniques to explore the core research questions. Community researchers were paid for their time on the project. At the time of lockdown, each community researcher had a total of 15 outstanding hours for the project. Although the funding body offered either extensions or temporary suspension of projects, the financial implications of COVID-​19 were becoming increasingly clear and the project team felt a moral obligation to continue the project and offer community researchers an active role within it. Initially, we aspired to continue gathering data for the research questions in a remote way. The community research team were asked their preference for contact with the project. Three said they were unable to continue with the project due to pressures of their existing family, work or study commitments, combined with the anxieties surrounding COVID-​19. While they temporarily stepped away from the project, the project team made it clear they could return at any time. Seven people said they would prefer to engage with the project by telephone interviews and four said they would like to take part in group video calls. For the first two weeks of lockdown, the project team collected data using telephone and video calls. However, both posed challenges for the project team and the group. Telephone interviews proved useful for research, allowing for semi-​ structured individual conversations and recording of the interviews. They also supported the wellbeing of some members of the group who were feeling anxious or isolated. However, telephone calls were time consuming and with limited staff capacity, we were unable to sustain the volume of calls. Equally, conducting individual interviews with community researchers was contradictory to the collegiate approach underpinning PAR (Aldridge, 2016) and while members were in contact with the project team, they were no longer in contact with each other. Digital technologies hold great potential for communication (CEBR, 2015) and ‘digital spaces have switched from an amenity to a necessity’ during the pandemic (Beaunoyer et al., 2020, p 2). For Keep Talking, video calls negated the time-​ consuming elements of telephone interviews and allowed for the group to connect through the screen. Although four

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people initially indicated a preference for group video calls, nine responded to the first call for participants and 15 to the second, indicating that the need to connect with other members of the group was strong. However, each video call shone a spotlight on those with outdated hardware, poorer bandwidth or low levels of IT literacy and confidence (Beaunoyer et al., 2020), causing frustrations within the group and threatening to fracture research relationships which had thrived during face-​to-​face contact. Equally, the need to mute microphones and the ability to see only a few people on the screen at any one time was contradictory to the inclusive principles underpinning Keep Talking. At the same time, COVID-​ 19 was dominating. The emotional impact of COVID-​19 and its negative impact on wellbeing across the globe was already being noted (Rajkumar, 2020; Smith et al., 2020). Many of the team were anxious, concerned about the health, family and financial implications of the virus while others were managing loneliness or addictions. Given these personal challenges and inequalities in digital access, an ethical decision was taken by the project team to cease all formal data collection from the community research team and focus on cohesion and wellbeing for the group. We reflected that, while we had research data to produce some useful outcomes for the project, the future ability of the community research team to support the post COVID-​19 recovery would be dependent on their strength and resilience as a team and their wellbeing, defined as ‘feeling good and functioning well’ (New Economics Foundation, 2008, p 1) as individuals. The ‘Five ways to wellbeing’ report (New Economic Foundation, 2008) outlines five, everyday actions that promote wellbeing:  connect, be active, take notice, keep learning and give. Equally, the benefits of creativity on wellbeing and connecting communities have been identified (All-​ Party Parliamentary Group on Arts, Health and Wellbeing, 2017). We considered ways in which we could encourage creativity while supporting the group to engage in the five ways of wellbeing. The result was a series of communication mechanisms and activities which, before lockdown, we would have considered as falling outside the remit of Keep Talking.

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Despite the difficulties experienced with video calls, the group and project team were keen to continue findings ways of creating connections between the group. All community researchers had some access to a basic smartphone and so using more accessible digital technologies to strengthen group cohesion and wellbeing became the focus of the project. The group were already communicating via a WhatsApp group. During the first month of lockdown, this became the social space for the group to have informal conversations, in the same way they would over a hot drink or lunch during our face-​to-​face meetings. The period of lockdown posed unprecedented challenges for the group and was at the forefront of the community researchers’ minds. While for many, it brought intense anxiety and heightened stress, it presented an opportunity to record the unique period and the value of community in supporting each other through it. We encouraged the group to take notice by setting a series of tasks so they could record their experiences of lockdown, their environment, their emotions and ideas to promote wellbeing. We also supported each member of the group to explore their own creative means of expression. Weber (2008 in Furman et al., 2019) identifies that such creative methods aid discussion, by capturing things which may be hard to put into words. The result was a diverse range of creative methods illustrating the groups’ collective experience of lockdown, including photographs, blogs and diaries, poems, a lockdown recipe book, a ‘lockdown survival kit’ and podcasts. Engagement with Keep Talking also provided the group with a means to continue learning by maintaining contact with each other, conducting desk research for the project, and exploring and testing new creative techniques. The group were also encouraged to record their daily walks either by photographs or using a steps counter, where this was possible, and both group and individual contact with the project team meant the group remained actively involved in the project. Finally, the activities encouraged each member to share, or give, something of themselves to the group, whether insight into their experience or suggestions for improving wellbeing during the pandemic.

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Benefits of deprioritizing research and prioritizing wellbeing

Reprioritizing the research questions and refocusing on creativity, connection and wellbeing has had a positive impact on wellbeing and cohesion within the community research group. In a series of video and telephone interviews, community researchers reflected on their creative engagement with the project, their creative outputs and the benefits of adopting this alternative approach. The adapted approach had positive impacts on both their relationships with each other and on their individual mental health and wellbeing. The WhatsApp group became a strong and constant support network for members, a place not only to share their creative outputs but to also offer support and encouragement, especially where people were feeling isolated or anxious. As one community researcher notes, “We were all throwing things out in the WhatsApp group and trying to sense when people weren’t doing well. There was a sense of wanting to make sure everyone is doing well… throwing out the odd nice word when you can tell someone is struggling.” By sharing their own experiences of lockdown in different ways, community researchers felt they had a valuable role to play in the group, “sharing these [poems] with people has made me feel like I wasn’t alone, and it was comforting with all the support and encouragement which I have had from the group”. Equally, others benefited from the community sharing creative outputs as these acted as a catalyst for innovative ideas, “Taking part and seeing other people be involved with [creative methods] has inspired me to think about what other things I could do.” Food was often used to aid conversations in Keep Talking. Sessions were scheduled around mealtimes to provide time for the group to bond and discuss community research while eating together. The absence of this after the introduction of lockdown restrictions was stark. Over time, some of the team started to share photos of their meals or recipes on the WhatsApp group which organically developed into a ‘lockdown recipe book’. For the group, this continued discussion about food helped to “bring people together” and illustrated the development of skills and confidence over time,

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“I enjoyed seeing people’s cookery progress, from throwing it all in a pot to look at them two quality Sunday dinners!” The podcasts captured community researchers’ experiences of lockdown, their strategies for dealing with isolation, the role of creativity in connecting communities and the value of friendship in dealing with unprecedented times. The series in its entirety highlights the importance of community for the group. Although podcast recording was an individual activity, engagement with the podcast was one way in which community researchers were able to build confidence and feel connected to a larger community: [Being involved with the podcast] has shown that as a group we can still do things with other people … It’s important that we can still make those connections between each other in the group, but then also wider than that, in the community. It’s made me more positive and confident that I can still use my skills and put my voice out there, without physically having to be with people.

Bickerstaff et al. (2017) argue that confidence levels continually shift depending on interactions with peers, staff and other members of the community. The shift to contactless creative methods built friendships which reaffirmed confidence levels through constant but remote casual engagement. One community researcher stated, “A sense of camaraderie developed … we were all in the deep end together but have all come through the other side stronger.” Friendships have developed during the period, along with a better understanding of each other: “It’s helped me make new friends and helped me to understand ‘normal people’, who haven’t suffered mental health and an alternative lifestyle, and it has helped me to appreciate their lives too.” Community researchers also noted the positive impact engaging in creativity had on their mental health and wellbeing. Some were able to combine creativity and exercise by documenting their daily walks. This not only helped one community researcher to “see things [they] wouldn’t usually see”, and take notice of their emotions but the photographic documentation of the walks has also been a way to look

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back and reflect on the experience in a more positive way as lockdown restrictions were eased:  “I didn’t really think anything about the photographs when I had taken them on the walks, but when I look back now I remember how I felt and the experiences of the walks.” Using creative methods to engage the community research team in an adapted version of the Keep Talking project also helped to give hope to the community researchers during a challenging and stressful time. One community researcher commented that creativity was a “reminder that things can be nice and that things will get better”. Similarly, both the community researchers and the project team embraced new ways of engaging with the project and, despite the shift away from some of the research aims, the resulting outcomes are a diverse and rich bank of resources that centre around the issues of community, relationships, inclusivity, flexibility and connectedness, which are important principles for developing strong and resilient community research teams. As one community researcher summarizes, Don’t ever assume that there is only one way of doing something, we’ve proved this as a group that you don’t just need to stop [when faced with problems]. We’ve found ways to keep going and to reach out to each other and keep making an impact in the community. Conclusion

The advent of COVID-​19 presented a unique opportunity to adopt a creative approach to Keep Talking that would not have been considered had face-​ to-​ face sessions continued. The resulting research project was messy, shifting focus and methods of data collection several times during its lifespan. However, the research also provided insight into the importance of community, relationships and creativity for both enhancing wellbeing during stressful times and for community research more broadly. In this way, our learning about the needs of community researchers, sustaining a team of community researchers and creating resilience, far exceeded our original expectations. Moreover, the community researcher team has remained a cohesive group and indeed

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strengthened the support network from within by engaging in creative forms of expression through which experiences, emotions and strategies were shared and support offered. As we emerge from the immediate crisis of the worldwide pandemic, the recovery period will undoubtedly present further economic and social challenges. It is now that the team of community researchers will have a vital role to play in supporting the communities they are a part of in navigating and influencing this recovery.

References Aldridge, J. (2016) Participatory Research:  Working with Vulnerable Groups in Research and Practice, Bristol: Policy Press. All-​ Party Parliamentary Group on Arts, Health and Wellbeing (2017) Creative health: The arts for health and wellbeing. Available at:  https://​www.culturehealthandwellbeing.org.uk/​appg-​inquiry/​ Publications/​Creative_​Health_​Inquiry_​Report_​2017_​-​_​Second_​ Edition.pdf [accessed: 4 August 2020]. Beaunoyer, E., Dupéré, S., and Guitton, M.J. (2020) ‘COVID-​19 and digital inequalities:  Reciprocal impacts and mitigation strategies’, Computers in Human Behaviour, 111(2020): 106424. Bickerstaff, S., Barragan, M., and Rucks-​ Ahidiana, Z. (2017) ‘Experiences of earned success:  Community college students’ shifts in college confidence’, International Journal of Teaching and Learning in Higher Education, 29(3): 501–​510. CEBR (2015) The Economic Impact of Basic Digital Skills and Inclusion in the UK. [ebook] London:  Centre for Economics and Business Research. Available at:  https://​cebr.com/​wp/​wp-​content/​ uploads/ ​ 2 015/ ​ 1 1/ ​ T he- ​ e conomic- ​ i mpact- ​ o f- ​ d igital- ​ s kills- ​ a nd-​ inclusion-​in-​the-​UK_​Final.pdf [accessed: 20 July  2020]. Emadi-​Coffin, B. (2008) ‘Get Talking:  Community participation and neighbourhood learning’, Widening Participation and Lifelong Learning, 10(3): 30–​34. Furman, E., Singh, A.K., Wilson, C., D’Alessandro, F., and Miller, Z. (2019) ‘“A space where people get it”:  A methodological reflection of arts-​informed community-​based participatory research with nonbinary youth’, International Journal of Qualitative Methods, 18(2019): 1–​12. Gratton, N. (2019) ‘People with learning disabilities and access to mainstream arts and culture:  A participatory action research approach’, British Journal of Learning Disabilities, 48(2): 106–​114. Gratton, N. and Beddows, R. (2018) ‘Get Talking:  Managing to achieve more through creative consultation’, in Stout, M. (ed) From Austerity to Abundance? (Critical Perspectives on International Public Sector Management), Volume 6, Bingley: Emerald Publishing, pp 141–​160.

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Gratton, N., Vincent, P., Singha, L., Beddows, R., Ball, A., and Get Talking Hardship Community Researchers (2019) Get Talking Hardship. Available at:  https://​www.staffs.ac.uk/​research/​pdf/​ get-​talking-​hardship-​report-​2019.pdf [accessed: 4 August  2020]. Hetherington, J. (2015) Family arts campaign: Content guidance communication for family arts events. Available at:  http://​www.familyarts.co.uk/​wp-​content/​uploads/​2015/​03/​Content-​Guidance. pdf [accessed: 4 August 2020]. McIntyre, A. (2008) Participatory Action Research, London: SAGE. New Economics Foundation (2008) Five ways to wellbeing. Available at:  https://​neweconomics.org/​uploads/​files/​five-​ways-​to-​ wellbeing-​1.pdf [accessed: 24 July 2020]. Rajkumar, R.P. (2020) ‘COVID-​19 and mental health: A review of the existing literature’, Asian Journal of Psychiatry, 52(2020): 102066. Smith, L., Jacob, L., Yakkundi, A., McDermott, D., Armstrong, N., Barnett, Y., López-​Sánchez, Martin, S., Butler, L., and Tully, M. (2020) ‘Correlates of symptoms of anxiety and depression and mental wellbeing associated with COVID-​19: A cross-​sectional study of UK-​based respondents’, Psychiatry Research, 291(2020): 113138.

Acknowledgements

The authors would like to thank the Keep Talking Community Research team for their tireless commitment to the project and dedication to making a difference in their city, including: Arathi, Rebecca, Chloe, Dan, James, Jennifer, Lotika, Louise, Matt, Lynne, Monienne, Ros, Rose, Ben, Phil, Simon, Dave and Karl. Sincere thanks are also given to Darren Murinas and Rachele Hine, our project partners at Expert Citizens CIC.

10 Occupational being during the COVID-​19 pandemic Danielle Hitch, Emily Adcock, Emma Cramer and Taylah Sayers

The COVID-​19 pandemic is having a severe and unprecedented impact on the health and wellbeing of people around the world. In a matter of weeks (and sometimes days), long-​ established ways of doing, being, becoming and belonging have been forced to rapidly transform to adapt to new community standards. While similar disruptions have occurred previously in the context of local events (such as war or natural disaster), they have never occurred on a global scale before. Our health and wellbeing is directly impacted upon by participation in the activities of daily living that bring meaning to our lives (Wilcock, 2006). This inter-​relationship is the primary focus of the health profession of occupational therapy, which is a long-​established part of health services around the world (World Federation of Occupational Therapists, 2012a). Occupations are the daily activities that people do, either individually or with others, to occupy their time and bring meaning or purpose to life (World Federation of Occupational Therapists, 2012b). The term ‘occupational being’ refers to an identity which emerges from interaction between the four dimensions of occupation –​doing, being, becoming and belonging (Hitch and Pepin, 2020). Occupational beings may be individuals, groups or populations. A study to follow the pandemic experiences of people living in Western Melbourne is currently underway in Australia. The aim of the mixed-​ methods study is to describe how community members experience occupational being over a six-​month period, including changes over time. This chapter will reflect on the opportunities and challenges we have 111

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experienced while designing and performing research during the COVID-​19 pandemic.

Managing uncertainty

There are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns –​the ones we don’t know we don’t know. And if one looks throughout the history … it is the latter category that tend to be the difficult ones. (Rumsfeld, 2002)

All research during the COVID-​ 19 pandemic is being conducted in a complex and rapidly evolving context, which has a lot of ‘unknown unknowns’. Our knowledge of the virus remains in its infancy, and there is significant variation in the way governments and health systems are supporting public health across jurisdictions. As reflected in the quote by Rumsfeld, it is the unknowns that have required us to iteratively adapt our approach to this study. These adaptations have been based on the best available evidence, but are also made with the full acknowledgement that they are unlikely to be perfect. Our first strategy for coping with unknowns was to embed the design of this study in established theoretical frameworks. Theoretical ways of knowing provide explanations for phenomena, which are generalizable across a range of circumstances, methods and populations. Theoretical models provide a description of the scope and key variables for the phenomenon of interest, and related frameworks may enable the management of complex data. We selected the Pan Occupational Paradigm (Hitch et al., 2017) as an organizing framework, to ensure our approach to data collection and analysis remained grounded within an occupational perspective of health. This framework provides definitions of the dimensions of doing, being, becoming and belonging (Hitch et al., 2014a, 2014b), which are applicable to any daily

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activity. Previously developed definitions of quality of life (Baron et al., 2019) and resilience (Chmitorz et al., 2018), and associated standardized outcome measures were also incorporated into the study design to explore related variables. These existing theoretical resources provided a basis in rigour for our study, and also offered an opportunity to compare findings across other studies using the same measures. However, not all aspects of this study were based upon previous research or development. The main data-​collection scale (the Occupational Being Status Scale or OBSS) was newly developed and had not had its validity or reliability confirmed via psychometric testing. Psychometric testing with recognized statistical methods enables scale users to be confident that it measures what it purports to (validity) and takes to measurements consistently (reliability). This is particularly important when scales are intended for use at the population level (such as the OBSS), to provide a rigorous platform for data collection to inform both research and economic analyses. The OBSS was developed in response to a previously identified need for a multi-​attribute measure of occupational being which was suitable across the individual, group and population levels. The OBSS was initially developed from a comprehensive literature review (Hitch et al., 2014a, 2014b), and had already undergone preliminary peer review and rewriting to ensure its readability. Participants registering to take part in the longitudinal data collection for this study were asked to provide some initial data about its perceived validity from their perspective, as a means of establishing face validity. However, this assumes their experience of occupational being during the pandemic constitutes the baseline. Any data collected during the pandemic must be interpreted with this context in mind, particularly for studies that focus on lived experience or the establishment of measurement properties. Another aspect of the unknown for this study was the varying levels of research experience within the investigating team. The principal investigator has over a decade’s research experience, including previous studies utilizing a similar approach in this local community. In contrast, the associate investigators considered this to be their first encounter with

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research following graduation as occupational therapists. One advantage of including relatively novice researchers is that they have not had to overcome or contend with expectations around how the study ‘should’ proceed. While this could enable greater creativity and innovation in some circumstances, novice researchers may also feel constrained in their contributions by their self-​perceived lack of experience. The status of the associate investigators as working clinicians was another advantage for the study, given their daily engagement with the impact of the pandemic on the local community. The principal investigator is in a research only role, but has an enduring relationship with the community as a long-​term resident. However, as the impacts of the pandemic have ebbed and flowed, the associate investigators have also needed to consider the competing demands of their other clinical duties. Research is not necessarily considered a high priority at all times, particularly when the health service has been dealing with surges in cases and admissions. However, all investigators have received consistent support from their respective managers to navigate the unknowns of this study, providing a stable foundation for the research team’s work.

Engaging with new ethics requirements

Ethics Committees throughout the world have also had to adapt their practices due to the impact of the pandemic. Face-​ to-​ face data-​ collection methods were suspended to ensure compliance with social distancing, necessitating an overhaul of many standard methods and practices. As a result, online recruitment and data-​ collection methods have become far more prevalent (Saberi, 2020). However, there are acknowledged limitations to obtaining informed consent for online surveys (Barrera et al., 2016), given that researchers may not be able to check for understanding and comprehension. The registration form for the study was therefore modified to include multiple-​choice questions that checked participant understanding before they provided consent. If their answers indicated the participant did not have an informed understanding, they were withdrawn from

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the study by the investigators. An anonymous system was also devised to enable the tracking of participant responses over time while protecting confidentiality, using age, postcode and gender to generate an individual identifier. The review process was also impacted upon by a significant number of the committee members being redeployed to the health service’s pandemic response. COVID-​19 specific studies were prioritized for review, with mechanisms introduced for review outside of the committee’s bi-​monthly meeting. Despite not being COVID-​19 specific, the four-​ week approval timeframe for this study was very similar to those experienced prior to the pandemic. During the process of ethics approval, the concept of ‘occupational being’ was also critiqued for being overly broad, with recommendations that a more focused approach to lived experience be taken. However, the research team provided additional rationale for the relevance of high-​level concepts like occupational being in complex situations like the pandemic, and the study was allowed to proceed.

Navigating limitations and barriers

As local community became the epicentre of local COVID-​19 outbreaks, a direction was given from organizational leaders at the health service to cease all recruitment from the healthcare workforce. This had been the primary participant group in original plans for this study, and several alternative approaches were considered. The solution proved to be sampling volunteer healthcare workers, who had been furloughed due to guidelines limiting attendance by employees designated as ‘non-​essential’. A Community Profile for the local government area from the Australian Bureau of Statistics (2016) showed that 11 per cent of the local community were engaged in voluntary work, with an age and gender profile comparable to the general population. Inviting their participation would therefore not impact on essential health services, but would ensure people from a broadly representative sample had an opportunity to take part. The voluntary worker role was not in the original inclusion criteria for this study, and all potential

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participants were encouraged to pass on the study invitation to any other local community members who might have been interested. While a target sample of 100 participants was initially projected, in practice this was impossible to achieve. Some of the volunteer coordinators approached to disseminate the invitation to participate did so, but others declined. Recruitment was extended for longer than initially planned, to maximize opportunities for registration. However, the final sample of participants was 23, with between 10 and 16 participants going on to subsequently complete the survey each month. All registered participants are female, with approximately half the sample being young adults and half being older adults. As such, the original predominantly quantitative approach was modified to place greater emphasis on a mixed-​ methods analysis. Qualitative comments were already being invited alongside the OBSS, and a modification is planned to invite participants to a semi-​structured interview at the conclusion of the study. These qualitative data are intended to supplement the psychometric data collected about the OBSS in this study, and will demonstrate its potential for use in mixed-​methods research. These adaptations will provide an opportunity for a gender specific analysis of pandemic lived experience, which will still be of value to the health service when planning for the medium-​and longer-​ term consequences of the pandemic. Given the variable research experience among the research team, the principal investigator has provided additional support and mentorship throughout the study on a ‘just in time’ basis. This support has specifically highlighted how the study design and process is both the same and different to ‘usual practice’, and has encouraged a reflective approach to the research by all team members. At the time of writing (late July 2020), a key issue for reflection has been the need to rely on online means of communication, even when located at the same hospital and at times only metres away. At times, these conversations have felt more difficult than they would be face to face, particularly when new skills or practices were being taught or determined.

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The rapid pace of the unfolding pandemic has also been a significant challenge, as the study has been designed and implemented far more quickly than has felt comfortable at times. This has particularly impacted upon the associate investigators, who have needed to engage as novice researchers with limited time for consolidation of new knowledge and skills. At times, this has led the principal investigator to adopt a more prescriptive or didactic approach than would normally be preferred when building the capacity of new researchers. However, the research team is hopeful that there will be more space for reflection as we settle into the rhythm of our periodic data collection and have more data to review.

Early findings

Data from the initial two months of the study have shown that participants’ involvement in social, leisure, education and employment activities had both positive and negative impacts on their occupational being. Their qualitative data indicated a prevalent sense of social isolation, demotivation and anxiety, which was framed in the context of the uncertainty of life during the pandemic. Public Health guidelines and restrictions have stopped people from participating in valued life roles, which in turn has had a negative effect on their overall satisfaction. The impact of financial pressures and changes to work roles were also highlighted as key negative aspects of their current experience. However, no relationship was found between the participants’ self-​reported resilience and their occupational being scores on the OBSS. The early findings also included data describing how participants appreciated having more free time, engaging with ‘the simple things in life’, taking up new hobbies and staying in touch with their families. Maintaining productivity, a positive mind frame and (most especially) social connections were all seen as ways of supporting occupational being. These and other key factors are also emerging as influential across multiple dimensions of occupation (that is, doing, being, becoming and belonging), which is reflective of their interdependent nature. Data collection for the third month

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(August 2020) is about to occur, and since the previous survey the local community has commenced a period of increased restrictions due to a surge in local COVID-​ 19 cases and deaths. We expect to see this change in communal lived experience reflected in the new data, and are looking forward to understanding the nuances of its impact on occupational being.

The lessons of doing research during a pandemic

We believe our experiences with the study to this point have taught us three key lessons about doing research during these extraordinary times. First, it can be difficult to make the case for research being an essential aspect of health services at a time when resources are stretched or challenged. However, it is important to advocate for its continuance given that life is unlikely to return to ‘normal’ for many years (if at all). Research conducted in the acute phase of the pandemic can inform planning and preparations for the ‘new normal’ we all face, helping to support this transition for our local community. Management and leadership support are crucial to the maintenance of research activities in such difficult times, by demonstrating organizational commitment to both the immediate and longer-​term view. Second, research systems and processes may appear to be static and unchanging, but they are also rapidly evolving in response to the pandemic. While researchers have been able to quickly adapt in many cases (that is, via online research), these new practices deserve to be analysed just as critically and thoroughly as the processes they have replaced. The pandemic provides many opportunities for innovation and creativity, but pre-​existing research structures and processes may also provide a solid basis for incremental adaptations and modifications which are equally effective in overcoming challenges. And finally, while context has always been a central issue for research, it has never been more important than it is now. All research studies undertaken during this pandemic will necessarily be ‘different’ to those conducted at other times,

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and local pandemic conditions should be considered an extra (albeit invisible) member of the research team. A detailed description of the local pandemic restrictions and conditions will be required in all reporting of studies from this period, to enable the scientific and general community to make sense of what their findings mean. Despite the challenges we have experienced to date, we believe the benefits of conducting research during the pandemic far outweigh the costs. The study described here is laying the groundwork for a post-​pandemic world, and providing quality evidence around the intimate link between occupation and health for a better future.

References Australian Bureau of Statistics (2016) 2016 Census community profiles:  General community profile. Available at:  https://​ quickstats. censusdata.abs.gov.au/​census_​services/​getproduct/​census/​2016/​ communityprofile/​21301?opendocument [accessed: 29 July 2020]. Baron, H., Hawrylyshyn, N., Hunt, S.S., and McDougall, J. (2019) ‘Understanding quality of life within occupational therapy intervention research:  A scoping review’, Australian Occupational Therapy Journal, 66(4): 417–​427. Barrera, A., Dunn, L., Nichols, A., Reardon, S., and Munoz, R. (2016) ‘Getting it “right”: Ensuring informed consent for an online clinical trial’, Journal of Empirical Research in Human Research Ethics, 11(4): 291–​298. Chmitorz, A., Kunzler, A., Helmreich, I., Tuscher, O., Kalisch, R., Kubiak, T., Wessa, M., and Lieb, K. (2018) ‘Intervention studies to foster resilience:  A systematic review and proposal for resilience framework in future intervention studies’, Clinical Psychology Review, 59(2): 78–​100. Hitch, D. and Pepin, G. (2020) ‘Doing, being, becoming and belonging at the heart of occupational therapy: An analysis of theoretical ways of knowing’, Scandinavian Journal of Occupational Therapy, 24: 1–​13. Hitch, D., Pepin, G., and Stagnitti, K. (2014a) ‘In the footsteps of Wilcock, part one:  The evolution of doing, being, becoming and belonging’, Occupational Therapy in Health Care, 28(3): 231–​246. Hitch, D., Pepin, G., and Stagnitti, K. (2014b) ‘In the footsteps of Wilcock, part two:  The interdependent nature of doing, being, becoming and belonging’, Occupational Therapy in Health Care, 28(3): 247–​263. Hitch, D., Pepin, G., and Stagnitti, K. (2017) ‘The pan occupational paradigm: Development and key concepts’, Scandinavian Journal of Occupational Therapy 25(1): 27–​34.

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Rumsfeld, D. (2002) DoD news briefing: Secretary Rumsfeld and Gen. Myers. Available at:  https://​archive.defense.gov/​Transcripts/​ Transcript.aspx?TranscriptID=2636 [accessed: 29 July 2020]. Saberi, P. (2020) ‘Research in the time of coronavirus:  Continuing ongoing studies in the midst of the Covid-​19 pandemic’, AIDS and Behaviour, 18 April: 1–​4. Wilcock, A. (2006) An Occupational Perspective of Health, Thorofare, NJ: SLACK. World Federation of Occupational Therapists (2012a) Definition of occupational therapy. Available at: http://​www.wfot.org/​AboutUs/​ AboutOccupationalTherapy/ ​ D efinitionofOccupationalTherapy. aspx [accessed: 29 July 2020]. World Federation of Occupational Therapists (2012b) About occupational therapy. Available at:  https://​www.wfot.org/​about/​about-​ occupational-​therapy [accessed: 29 July 2020].

11 Prioritizing inclusion, ethical practice and accessibility during a global pandemic: the role of the researcher in mindful decision making Emma Partlow Introduction

Within the context of COVID-​ 19, the potential for a reimagining of how we carry out ethical and inclusive research has come to the fore. There is the possibility for widespread use of digital methods of conducting research, however, there are access, inclusivity and ethical issues to be closely considered. This chapter will specifically focus upon how digital methods influence both disabled participant and researcher experiences. Disability will be a key focus throughout; however, the key points could be applied to a variety of projects. Following a nationwide lockdown in March 2020 as a result of the global pandemic COVID-​19, there has been a rise in the use of online spaces and technologies. This time has enabled and, in many cases, enforced innovation as researchers have had to create new ways of engaging with participants. Digital technologies are often assumed to be open and accessible to ‘all’, however, digital inequalities continue to exist and shape people’s lives (Robinson et al., 2015). As researchers, we must avoid falling into the trap of describing online research as solely opportunistic and without potential risk. With the rise in digital methods of data collection, the need to avoid 121

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exacerbating inequalities and power imbalances is increasingly salient. With the use of digital methods, it is essential that participants have a full understanding of who the researcher is and why research is being carried out. As a result of fewer visual and communicative cues being present with digital methods than with in-​ person research, participants may disclose information that they would perhaps not share in a face-​to-​face situation. Furthermore, there is a risk of over-​ identification, that might be regretted at a later date (Finch, 1993; Tregaskis, 2004). For example, both researcher and participant(s) having a disability does not erase the possibility of stark differences (of socio-​ economic or political status, ethnicity, sexuality, race or religion, for example). The need to manage identities translates into the need for transparency whereby the researcher is honest and clear about the research aims. Participants are often encouraged to bring their whole selves to research projects, making it essential that researcher identity is also shared as, often, very little is known about researchers. Making researcher biographies available and accessible enables identities to be known which may serve to make the research process more transparent. Furthermore, allowing, and encouraging participants to ask their own questions can reduce power imbalances. A face-​less researcher behind a screen is at risk of becoming a sounding board and this may blur the boundaries between counselling and research. Without careful forethought these situations may become difficult to manage. Additionally, as a result of lockdown, people may be experiencing loneliness and wish to engage with researchers more readily than before. With 30.9 per cent of the British adult population having reported that their wellbeing had been impacted by COVID-​19 (ONS, 2020b), there is the potential for research engagements to become exploitative. Researchers have a responsibility to prevent participants from harm, therefore, it is important that consent does not serve as a ‘tick-​box’ exercise. Appropriate information should be provided in an accessible format in order for participants to be able to provide informed consent that is not rushed. This

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is particularly important when there are cognitive or physical impairments which could impact upon the negotiation of consent. This is one of the many ways that researchers can ensure that participants are valued and treated equitably, in a non-​discriminatory fashion.

Ethics and care

Ethical research should be underpinned by the desire to ‘maximise benefit and minimise harm’ (Academy of Social Sciences, 2015). This should be a reciprocal relationship and the practice of care and resilience within research endeavours is not limited to participants. There is an understanding that researcher needs must be met, in addition to supporting other stakeholders involved within the research process such as gatekeepers (Kara, 2018). The widespread use of remote working and research methods can be seen as having benefits and promoting inclusivity for disabled researchers. The barriers to disabled researchers have been documented as the need for flexible working practices and a reliance upon public transport that is often inaccessible (Zarb, 1997). However, these barriers can arguably be overcome, or the effects minimized through the utilization of remote research methods. The inclusion of disabled researchers is important as they may hold experiences that could be drawn upon and prove useful within the context of social research (Zarb, 1997; Tregaskis and Goodley, 2005). Within methodologies which stress knowledge creation as a collaboration between researcher and researched, remote research methods can offer potential value and benefits to both participants and researchers, which should not be understated. The global pandemic has necessitated the use of digital methods, however the ways in which accessibility has been negotiated and prioritized have yet to be fully revealed. There are people potentially being excluded from a variety of projects, leading to a diverse range of narratives being lost or unaccounted for. There may be long-​term implications if those populations who have difficulty in accessing and

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participating within online research projects continue to be excluded or impeded. Some voices risk being lost amid the increased use of online research methods. Therefore, extra considerations need to be undertaken; for example, asking ‘how can I engage with populations who may not be digitally literate or are excluded from digital ways of accessing the world?’ In the context of the pandemic, both researchers and participants are likely to be at home and this is a practical benefit. However, with the use of technology there is a risk that digital research methods could become invasive as involvement within projects infiltrates the homes and walls of participants (and researchers). There are some remote methods that make use of covert or ‘invisible’ researcher presence, whereby data are extracted from online spaces (Lehner-​Mear, 2020, p 127). There are ethical considerations and risks to conducting both covert online research and being an active, visible researcher (Kozinets, 2015). Arguably, during a time of global crisis, we must prioritize transparency in order to conduct research ethically, ensuring that participants are fully informed and able to provide consent to their involvement. Otherwise, we run the risk as researchers of sitting behind a screen not knowing whether our participants’ wellbeing is appropriately supported. This is particularly worrying as participants could disclose feelings of distress or suicidal thoughts (Hanna, 2019). There is too much uncertainty and potential risk in using or talking to an anonymous account online as harm may occur to the contacted person. Researchers are also at risk of stress and harm from the emotional labour of negotiating these spaces (Hanna, 2019). Researchers may come across some sensitive topics due to the ‘naturalistic’ nature of some online spaces (Hanna, 2019). There is a question here about whether or not researchers using digital methodology are equipped with the toolkits necessary to support sensitive topics. Within online spaces, there is the possibility of opening up discussions remotely that may invoke uncomfortable feelings or distress for participants. With remote spaces, we cannot be assured that participants leave the research space feeling comfortable and safe. This is always an important consideration but more so during a

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global pandemic whereby individuals may be more vulnerable for a range of reasons. As researchers we have an ethical and moral duty to protect people from harm during our research projects, both when physically present and online. We should continue to ask difficult questions around research methods that extract contributions and utilize them as data without fully balancing potential benefits and harms. It is essential that participants’ wellbeing is supported, especially through digital methods where discomfort at continued participation can be masked by screens and technologies. The increased use of digital methodologies must be accompanied by the purposeful creation of transparent and open ethical dialogues between researcher and participant.

Inclusivity

Within the context of a global pandemic, discussions surrounding inclusivity are renewed in a way that continues to ask:  who is included within research and who is excluded? Researchers have the power to influence who can participate in projects through the very methods they choose to use. With the increased use of digital methods, we must be mindful as researchers to ensure we are not exacerbating inequalities by excluding people who do not or cannot have access to online spaces. Well-​ thought-​ out online methods can contribute to an inclusive research methodology whereby disabled participants are empowered. When methods are asynchronous or have asynchronous elements, participant autonomy can be exercised through the ability to edit responses and express answers in their own time rather than feeling the potential pressure of face-​ to-​ face situations (Seymour, 2001). This flexibility has potential advantages for both disabled participants and disabled researchers in terms of overcoming physical barriers. Additionally, online methods could potentially generate more responses and elicit richer data as the technologies’ potential to reduce power differentials means that people may feel more comfortable contributing (Williams et al., 2012). However, the use of digital methods may leave many

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people excluded from research projects. Technology is not neutral and exacerbates inequalities due to a ‘digital divide’ (Seymour, 2001, p 149). As researchers we must recognize that not everyone within society has ‘digital citizenship’ (Goggin, 2016), therefore, using digital methods could be exclusionary. There is a call for the internet to be free and universally available, however, this does not account for the resources required in order to access online spaces such as technological bandwidth and devices, thus, exacerbating inequalities further. It is insufficient to assume that digital methods can encompass diverse populations due to the inequalities that exist. Some participants may have less ability to afford, but a higher need for premium-​priced adaptive technologies required to access digital spaces. Only 78 per cent of disabled people in 2019 had accessed the internet recently, in comparison to 91 per cent of all adults in the UK (ONS, 2020a). As researchers we need to be aware of this and do what we can to capture the narratives of people who may not be able to access the internet. This may involve being creative and open to other ways of recruiting and communicating with people such as through the telephone and being open to snowball sampling, especially during a global pandemic. The internet can be a good place for conducting research, but we must be cautious about its sole use and be open to other avenues of conducting research remotely without necessarily involving online space. The pandemic provides an opportunity to look for innovative ways in which to engage and include a diverse range of people. Conversely, well-​designed remote methods can particularly benefit disabled individuals through enabling engagement on days and times that suit them. This is in addition to physical factors and accessibility considerations such as removing the need to attend a specific location (taking into account possible pain, transport, fatigue and other considerations in relation to disabled participants). Furthermore, there is the potential for more control and autonomy for the participant when using well-​ designed remote methods, which may lead to richer data. This is important for all research but particularly when working alongside disabled individuals who

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may be better able to engage at certain times or on certain days. Using asynchronous qualitative research methods could benefit both participants and researchers as reflection time is available (Williams et al., 2012) which reduces the pressures of live interactions and means that participant responses are well thought out (Williams et al., 2012). There is the risk that online methods may potentially become invasive and ask too much from participants in terms of time, privacy and energy. It is easy to return to participants via digital methods and request more. It might be assumed that the research process is quicker when digital methods are used, however, this runs the risk of placing undue pressure upon respondents (and researchers!). Therefore, careful planning and ample time are still required with the use of remote research despite the illusion of speed that is sometimes present. The internet is an opportunistic space for many researchers due to a lack of physical barriers. However, the privacy and boundaries of participants must still be respected to ensure participants are not treated as ‘objects’ of research. This is why this chapter advocates for a mindful and ethical approach to digital methods whereby participants’ autonomy and empowerment are central to the research design.

Mindful decision making

As researchers we must continue to push at the methodological boundaries and constraints often imposed by the need to conform to strict guidelines for ethic review boards, funders and reviewers. There is a need more than ever to be innovative about the ways in which we conduct ethical and inclusive research. COVID-​19 has been and continues to be detrimental and tragic for thousands upon thousands of individuals, however, the pandemic is an opportunity to stop, pause and reflect upon the ways in which we enact research and how we can improve our practice. This is a time for exploring creative and novel research methods which have the potential for reshaping how we think about and conduct social research. There is a caveat here for the novelty of remote working, and all that encompasses, to not take

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precedence over transparent, ethical and inclusive working practices. Digital research projects can have a harmful impact, particularly upon disabled participants who may not be able to access remote ways of participating within online research for a number of reasons as previously discussed. However, if conducted in a calculated manner, there is the potential for online methods to break down some of the barriers that disabled participants and researchers alike may experience and improve some aspects of research inclusivity. This chapter is underpinned by a call for researchers to be mindful as for every person successfully recruited and engaged within online methods, there may be several others excluded. It is all too easy to assume the universal use and access of online spaces due to their ubiquity within our lives. For many people, these methods could bring further ostracization and exclusion from important research projects. Consequently, the digital divide and technological access barriers for disabled people could mean that narratives are lost. It must not be forgotten that while the internet is opening new avenues for many people, some people are being excluded as the result of remote and digital working.

Conclusion

In order to cater for a diverse range of participant needs, particularly during a global crisis, it is imperative that researchers are open to flexible ways of collecting data. Furthermore, all researchers should be engaging in ongoing critical reflection and addressing their own biases and privilege while reflecting upon participants (and own) potential needs for care. This is of critical importance during a global pandemic when our usual methods of collecting data are not possible and we turn our attention to working digitally. Inclusive research methodologies depend upon the ways in which we as researchers recruit and maintain relationships with participants. The increased use of remote research methods during this time of global crisis can be seen as an opportunity to redesign research using technological means. It is important to continue to acknowledge ethical

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considerations around inclusivity and the potential risks of a move to digital approaches to the forefront of discussions. This needs to be executed in a way that does not perceive digital methodologies in an overly optimistic manner. There is currently no shortage of discussions surrounding whether or not we should still be pursuing research during a global pandemic. It can be argued that capturing research data and people’s narratives during a time of crisis is very important. However, ethical considerations need to be more robust and thorough than ever before to ensure harm and risk are minimized and inclusivity is maximized during these unprecedented times.

References Academy of Social Sciences (2015) Academy adopts five ethical principles for social science research. Available at:  https://​ www.acss. org.uk/​ d eveloping-​ g eneric-​ e thics-​ p rinciples-​ s ocial-​ s cience/​ academy-​adopts-​five-​ethical-​principles-​for-​social-​science-​research/​ [accessed: 8 August 2020]. Finch, J. (1993) ‘It’s great to have someone to talk to:  Ethics and politics of interviewing women’, in Hammersley, M. (ed) Social Research:  Philosophy, Politics and Practice, London:  SAGE, pp 166–​180. Goggin, G. (2016) ‘Reimagining digital citizenship via disability’, in McCosker, A., Vivienne, S., and Johns, A. (eds) Negotiating Digital Citizenship:  Control, Contest and Culture, London:  Rowman and Littlefield, pp 61–​80. Hanna, E. (2019) ‘The emotional labour of researching sensitive topics online:  Considerations and implications’, Qualitative Research, 19(5): 524–​539. Kara, H. (2018) Research Ethics in the Real World, Bristol: Policy Press. Kozinets, R. (2015) Netnography: Redefined (2nd edn), London: SAGE. Lehner-​ Mear, R. (2020) ‘Negotiating the ethics of netnography: Developing an ethical approach to an online study of mother perspective’, International Journal of Social Research Methodology, 23(2): 123–​137. Office for National Statistics (ONS) (2020a) Internet users, UK: 2019. Available at:  https://​www.ons.gov.uk/​businessindustryandtrade/​ itandinternetindustry/​bulletins/​internetusers/​2019 [accessed:  15 July 2020]. Office for National Statistics (ONS) (2020b) Coronavirus and loneliness, Great Britain:  3 April to 3 May 2020. Available at:  https://​ www.ons.gov.uk/ ​ p eoplepopulationandcommunity/ ​ w ellbeing/​ bulletins/​coronavirusandlonelinessgreatbritain/​3aprilto3may2020 [accessed: 17 July 2020].

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Robinson, L., Cotton, S.R., Ono, H., Quan-​Haase, A., Mesch, G., Chen, W., Schulz, J., Hale, T.M., and Stern, M.J. (2015) ‘Digital inequalities and why they matter’, Information, Communication & Society, 18(5): 569–​582. Seymour, W. (2001) ‘In the flesh or online? Exploring qualitative research methodologies’, Qualitative Research, 1(2): 147–​168. Tregaskis, C. (2004) ‘Identity, positionality and power:  Issues for disabled researchers. A response paper to Broun and Heshusius’, Disability Studies Quarterly, 24(2). Tregaskis, C. and Goodley, D. (2005) ‘Disability research by disabled and non-​disabled people:  Towards a relational methodology of research production’, International Journal of Social Research Methodology, 8(5): 363–​374. Williams, S., Clausen, M.G., Robertson, A., Peacock, S., and McPherson, K. (2012) ‘Methodological reflections on the use of asynchronous online focus groups in health research’, International Journal of Qualitative Methods, 11(4): 368–​383. Zarb, G. (1997) ‘Researching disabling barriers’, in Barnes, C. and Mercer, G. (eds) Doing Disability Research, Leeds:  The Disability Press,  49–​66.

Conclusion Helen Kara and Su-​ming Khoo

Care and resilience of participants, researchers and others, are rarely discussed in research methods books. This points to perhaps one of the small silver linings of the COVID-​ 19 pandemic:  in some research arenas, people have begun to take more care of each other. A global crisis that affects everyone, no matter where they live or however privileged or marginalized they may be, overturns outdated paternalistic Euro-​Western ideas that researchers must protect vulnerable participants. In a global pandemic, anyone may be vulnerable –​researcher and participant alike –​and this shifts the power balance in research relationships. The notion of an ‘ethics of care’ (Sevenhuijsen, 1998) appears here and there in the research literature, often as a counterpoint to an ‘ethics of justice’. However, the emphasis in the literature is often on care for research participants, with care for researchers –​and other stakeholders such as gatekeepers –​being side-​ lined or ignored. Researchers’ wellbeing is another topic which is rarely discussed in the research methods literature (Boynton, 2017; Velardo and Elliott, 2018); the term ‘researcher wellbeing’ yielded fewer than 100 hits on Google Scholar in mid-​August 2020. We are pleased that this volume contributes useful material on these under-​represented subjects. We began with a rousing chapter from Petra Boynton who champions researcher wellbeing. Then Stephanie Snow outlines a national health research project using personal oral testimony, which shows how widespread vulnerability affects research in practice. From the three volumes in this series, this is the only section where both or all contributors come from the same country:  the UK. Emma Partlow is another UK researcher whose chapter, in Part III, also addresses researcher 131

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wellbeing. An exploration of the literature indexed by Google Scholar on this topic suggests that the UK is indeed at the forefront of work on researcher wellbeing, though we are also aware of some excellent work on this topic from Australia, and no doubt other work is going on elsewhere. We hope these chapters will encourage researchers in more countries to recognize the importance of researcher wellbeing. It is undeniable that some participants are more vulnerable than others, though we would argue that all participants have some level of agency and should be enabled to make their own decisions as far as possible. Of the five chapters addressing participant vulnerability, three focus on children and young people, investigating their experiences of lockdown in 12 countries across Europe, the Middle East, the Far East and Africa. These projects use diary methods, phone interviews, action research and digital storytelling. Getrude Gwenzi used a diary method with children in Ghana, in Nigeria and in South Africa. Nicola Jones and her colleagues worked with young people in Jordan, Lebanon and the Gaza strip, using diary methods, phone interviews and digital storytelling within a participatory approach that built on existing relationships from ongoing longitudinal research. Leanne Monchuk and her colleagues worked with young people in Scotland, Wales, Northern Ireland, England, Italy, Lebanon and Singapore, using participatory action research. Jones and Monchuk and their teams both wrote of the challenges and opportunities they faced in trying to do participatory research online. These innovative approaches offer useful food for thought to anyone considering online research with children, whether local, national or international. Osasuyi Dirisu, Godwin Akaba and Eseoghene Adams were able to compare pre-​and post-​lockdown take-​up of maternal and newborn child health (MNCH) services, in Nigerian states with high and low reported levels of COVID-​ 19, using service data. Rachel Yoho, from the US, considers the disproportionate impact of the pandemic on minority ethnic communities which is particularly stark in the time of the Black Lives Matter movement. These chapters point out that, although everyone is affected by the COVID-​19 pandemic, we are not all affected equally, and needs for care

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may be urgent and vary critically. In times of disaster or crisis, pre-​ existing health inequalities may be exacerbated with devastating effect. Although only one of the chapters uses the term, these five chapters all speak of intersectionality, meaning the ways in which different forms of discrimination interact (Crenshaw, 1994). Gwenzi’s South African participants included migrant children, some of whom were undocumented and some of whom lived in precarious housing. Jones and her colleagues found that girls and young women had more difficulty in participating in phone interviews during lockdown due to lack of privacy and mobility and high levels of surveillance from male family members. Monchuk and her colleagues worked hard to recruit participants across different genders, ethnicities, housing types, geographic locations, family structures and health conditions, and to include specific groups such as LGBTQI and care-​experienced young people. They chose a GDPR-​compliant online platform, but found that some of their participants did not readily interact with this platform, so had to do further work to ensure this did not marginalize any participants. Dirisu, Akaba and Adams identified factors affecting MNCH service take-​up, including cultural beliefs, economic factors, and the attitude of healthcare providers, and noted that healthcare for women and children is often disproportionally affected by pandemics and other disasters. Yoho focused on the intersection between race and socio-​economic status. These examples show that researchers are recognizing and using the concept of intersectionality, which makes sense as it is pointless trying to study, say, gender without taking other factors into account. Part III of this volume looks at the intersection between care and resilience. Nicola Gratton, Ryan Fox and Teri Elder, from the UK, support participatory action research among community researchers who have experienced multiple disadvantages. The community researchers were initially dismayed by the withdrawal of their weekly research meetings at the start of lockdown. The project support team gradually deprioritized their research aims and prioritized community researchers’ wellbeing. In the process, the methods and focus of data collection shifted several times, from online meetings

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to a WhatsApp group, photographs, blogs, diaries, poems, a lockdown recipe book, a ‘lockdown survival kit’ and podcasts. This process had positive impacts on researchers’ wellbeing and on interpersonal relationships, and led to a stronger and more resilient research team. Danielle Hitch and her colleagues from Melbourne, Australia, study ‘occupational being’, the occupational identity of an individual, group or population, which has four dimensions:  doing, being, becoming and belonging. They have developed an Occupational Being Status Scale, and are testing it to find out which factors have positive and negative effects on individuals’ occupational being identity. Oliver Hooper, Rachel Sandford and Thomas Quarmby reflect on their research in the UK children’s social care systems to ask a vital question: when crisis strikes, should existing research be continued or new research conducted? Of course research is needed in times of crisis, and the advent of a crisis need not derail existing research. But the contributions to this volume –​and, indeed, to Volume 1 –​indicate that pausing to reconsider is crucially important at these times. Doing research as a reaction to a crisis, or continuing with research regardless of a crisis, may well lead to poor quality research. We would go so far as to suggest that, when a crisis occurs, stopping to rethink our research is an ethical imperative. (This is illustrated in more detail and in practice by Kathryn Coleman and her colleagues in Volume 3.) Every chapter in Volumes 1 and 2 has included ethical considerations. Volume 3 deals with ethics in more detail, and with creativity as the two are closely linked. 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 that this volume will help you towards a more caring and resilient approach to your research, during the COVID-​19 pandemic and beyond.

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References Boynton, P. (2017) The Research Companion:  A Practical Guide for Those in the Social Sciences, Health and Development (2nd edn), Abingdon: Routledge. Crenshaw, K. (1994) ‘Mapping the margins:  Intersectionality, identity politics, and violence against women of color’, in Fineman, M. and Mykitiuk, R. (eds) The Public Nature of Private Violence, New York: Routledge, 93–​118. Sevenhuijsen, S. (1998) Citizenship and the Ethics of Care:  Feminist Considerations on Justice, Morality, and Politics, Abingdon: Routledge. Velardo, S. and Elliott, S. (2018) ‘Prioritising doctoral students’ wellbeing in qualitative research’, The Qualitative Report, 23(2): 311–​318.