Handbook of Sensitive Research in the Social Sciences 103531522X, 9781035315222

Table of contents :
Cover
Copyright
Contents
About the editor
Contributors
Preface
1: Doing sensitive research in the social sciences: setting the scene
2: The locus of sensitive research
3: The emotional labour of conducting sensitive research: the researchers’ perspective
4: The art of ‘sensitive’ supervision: supporting, sharing and strengthening
5: ‘Majority doesn’t exist’: a critical perspective on research with LGBTQ+ people
6: Exploring death, dying, and bereavement: characteristics and challenges of a sensitive field of research
7: Social street work: intervention method as a research method in sensitive research?
8: Your voice matters!—(unintended) exclusion practices in sensitive research and older people
9: Drawing as an arts-based method for researching sensitive topics
10: Navigating sensitivity in urban research: methodological reflections from using photovoice with street traders
11: Researcher-made drawings and researching sensitive topics
12: Music elicitation and the art of listening
13: The use of instant messaging in sensitive research
14: Using visual research methods for research with chronically ill children
15: Ethical guidelines for doing research with children in sensitive subject areas
16: Ethical issues in participatory research with grieving children
17: Ethical guidelines for interview research with parents of underage children in the context of migration
18: Sensitively researching vulnerable populations—reflections from the field...
19: Researcher vulnerability: doing qualitative research in sensitive fields as mental health professionals
20: ‘Nothing about us without us’: researching sexual and reproductive health with priority populations
21: Against and with the silence: language, relations and methods in qualitative research on pregnancy loss and perinatal bereavement
22: Researching with individuals/couples undergoing IVF treatments: ethical, practical and methodological insights from within the field
23: From field to self: (in)sensitivities encountered in researching sexual harassment in Sri Lankan workplaces
24: Researching rape that is not recognised: an auto/biographical understanding of woman-to-woman rape and sexual assault
25: Adventures in sex work: a pracademic's perspective in Switzerland
26: Conducting research with adolescents experiencing marginalisation and vulnerability
27: Researching young people's experiences with alcohol, drinking and drunkenness
28: Researching hate crime with LGBTQ+ individuals
29: Que(e)ry-ing the nexus of vulnerabilities: the sensitive nature of research into LGBTQ+ and CALD survivor experiences of intimate partner violence
30: Researching sensitive issues with men: some reflections
31: The challenges of engaging in meaningful research on gender, domestic and sexual violence, and filicide
32: Reflections on researching interpersonal violence against older adults: obstacles and opportunities
33: Challenges for meaningful participation in prisoner or corrective services research
34: ‘Someone would have to die for me to give up’: the experience of researching suicide
35: End-of-life care and the human researcher: the emotional impact of sensitive research on researchers
Index

Citation preview

© The Editor and Contributors Severally 2025 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 or photocopying, recording, or otherwise without the prior permission of the publisher. Published by Edward Elgar Publishing Limited The Lypiatts 15 Lansdown Road Cheltenham Glos GL50 2JA UK Edward Elgar Publishing, Inc. William Pratt House 9 Dewey Court Northampton Massachusetts 01060 USA Authorised representative in the EU for GPSR queries only: Easy Access System Europe – Mustamäe tee 50, 10621 Tallinn, Estonia, [email protected] A catalogue record for this book is available from the British Library Library of Congress Control Number: 2024952791 This book is available electronically in the Sociology, Social Policy and Education subject collection https://doi​.org​/10​.4337​/9781035315239

ISBN 978 1 0353 1522 2 (cased) ISBN 978 1 0353 1523 9 (eBook)

Contents

viii x xviii

About the editor List of contributors Preface 1

Doing sensitive research in the social sciences: setting the scene Pranee Liamputtong

1

PART I ​DOING SENSITIVE RESEARCH: CONCEPTUAL UNDERSTANDING 2

The locus of sensitive research Gabriele Griffin

25

3

The emotional labour of conducting sensitive research: the researchers’ perspective Esmée Hanna and Richard Hall

38

4

The art of ‘sensitive’ supervision: supporting, sharing and strengthening Sharon Mallon, Erica Borgstrom and Sam Murphy

5

‘Majority doesn’t exist’: a critical perspective on research with LGBTQ+ people Clifford Lewis and Nina Reynolds

64

Exploring death, dying, and bereavement: characteristics and challenges of a sensitive field of research Ekkehard Coenen and Matthias Meitzler

77

Social street work: intervention method as a research method in sensitive research? Tiago A. Lobo-Dos-Santos

93

6

7

8

Your voice matters!—(unintended) exclusion practices in sensitive research and older people Katja A. Rießenberger, Barbara Barbosa Neves and Florian Fischer

55

115

PART II ​RESEARCH METHODS AND ETHICAL ISSUES FOR CONDUCTING SENSITIVE RESEARCH 9

Drawing as an arts-based method for researching sensitive topics Jari Martikainen

v

132

vi  Handbook of sensitive research in the social sciences 10

Navigating sensitivity in urban research: methodological reflections from using photovoice with street traders Elmond Bandauko and Godwin Arku

147

11

Researcher-made drawings and researching sensitive topics Baldwin Van Gorp

159

12

Music elicitation and the art of listening Jade Levell

174

13

The use of instant messaging in sensitive research Jordan Dawson and Yibo Fan

184

14

Using visual research methods for research with chronically ill children Ana Patrícia Hilário, Fábio Rafael Augusto and Joana Mendonça

198

15

Ethical guidelines for doing research with children in sensitive subject areas Ingrid Stapf and Jessica Heesen

210

16

Ethical issues in participatory research with grieving children Miriam Sitter

221

17

Ethical guidelines for interview research with parents of underage children in the context of migration Eveliina Heino and Maija Jäppinen

236

PART III ​CONDUCTING SENSITIVE RESEARCH IN THE SOCIAL SCIENCES: REFLECTIONS FROM THE FIELD 18

Sensitively researching vulnerable populations—reflections from the field... Declan Fahie

19

Researcher vulnerability: doing qualitative research in sensitive fields as mental health professionals Annette Binder

20

21

22

‘Nothing about us without us’: researching sexual and reproductive health with priority populations Judith A. Dean, Olivia Hollingdrake, James A. Fowler and Sarah Warzywoda

254

265

281

Against and with the silence: language, relations and methods in qualitative research on pregnancy loss and perinatal bereavement Julia Böcker

300

Researching with individuals/couples undergoing IVF treatments: ethical, practical and methodological insights from within the field Catarina Delaunay, Amélia Augusto, Mário J. D. S. Santos and Luís Gouveia

317

Contents  vii 23

24

From field to self: (in)sensitivities encountered in researching sexual harassment in Sri Lankan workplaces Arosha S. Adikaram

339

Researching rape that is not recognised: an auto/biographical understanding of woman-to-woman rape and sexual assault Rebecca (Bex) Twinley

354

25

Adventures in sex work: a pracademic’s perspective in Switzerland Lorena Molnar

26

Conducting research with adolescents experiencing marginalisation and vulnerability Jessica A. Heerde, Stephanie Begun, Lucas Calais Ferreira, Cristyn Davies, Marie Habito, Kristi Morrison, Lindsay Pearce, Farnaz Sabet, Amy M. Salazar, Jennifer A. Bailey and Susan M. Sawyer

371

384

27

Researching young people’s experiences with alcohol, drinking and drunkenness Samantha Wilkinson and Catherine Wilkinson

403

28

Researching hate crime with LGBTQ+ individuals James Pickles

418

29

Que(e)ry-ing the nexus of vulnerabilities: the sensitive nature of research into LGBTQ+ and CALD survivor experiences of intimate partner violence Alex Workman, Angela Dwyer and Tony Rossi

435

30

Researching sensitive issues with men: some reflections Martin Robb

31

The challenges of engaging in meaningful research on gender, domestic and sexual violence, and filicide Samantha Burton and Amie Simington

457

Reflections on researching interpersonal violence against older adults: obstacles and opportunities Hannah Bows

479

32

447

33

Challenges for meaningful participation in prisoner or corrective services research Nicole Peel, Alex Workman, Samantha Burton and Arianne Reis

34

‘Someone would have to die for me to give up’: the experience of researching suicide Laura Patterson

506

End-of-life care and the human researcher: the emotional impact of sensitive research on researchers Zana Bayley

522

35

Index

491

537

About the editor

Pranee Liamputtong is currently a professor in behaviour sciences at the College of Health Sciences, VinUniversity, Vietnam. She is also an Adjunct Professor at the Translation Health Research Institute (THRI) at Western Sydney University, the School of Public Health at La Trobe University in Australia, and the Faculty of Public Health at Mahidol University, Thailand. Previously, she held a position as Professor of Public Health at the School of Health Sciences, Western Sydney University, and Personal Chair in Public Health at the School of Public Health, La Trobe University, Australia. Pranee has also taught in the School of Sociology and Anthropology and worked as a public health research fellow at the Centre for the Study of Mothers’ and Children’s Health, La Trobe University. Her particular interests include issues related to sociocultural influences on childbearing, childrearing, motherhood, infant feeding practices, and reproductive and sexual health. Her current research includes motherhood, HIV/AIDS, breast cancer, sexuality and sexual violence, and the health impact of air pollution in Asia. Pranee has published several books and a large number of papers in these areas. These include Maternity and Reproductive Health in Asian Societies (with Lenore Manderson, Harwood Academic Press, 1996); Asian Mothers, Western Birth (Ausmed Publications, 1999); Living in a New Country: Understanding Migrants’ Health (Ausmed Publications, 1999); Hmong Women and Reproduction (Bergin & Garvey, 2000); Coming of Age in South and Southeast Asia: Youth, Courtship and Sexuality (with Lenore Manderson, Curzon Press, 2002); Health, Social Change and Communities (with Heather Gardner, Oxford University Press, 2003). Her more recent books include Reproduction, Childbearing and Motherhood: A Cross-Cultural Perspective (Nova Science Publishers, 2007); Childrearing and Infant Care Issues: A Cross-Cultural Perspective (Nova Science Publishers, 2007); The Journey of Becoming a Mother amongst Thai Women in Northern Thailand (Lexington Books, 2007); Population, Community, & Health Promotion (with Sansnee Jirojwong, Oxford University Press, 2008); Infant Feeding Practices: A Cross-Cultural Perspective (Springer, New York, 2011); Motherhood and Postnatal Depression: Narratives of Women and their Partners (with Carolyn Westall, Springer, Dordrecht, The Netherlands, 2011); Health, Illness and WellBeing: Perspectives and Social Determinants (with Rebecca Fanany and Glenda Verrinder, Oxford University Press, 2012); Contemporary Socio-Cultural and Political Perspectives in Thailand (Springer, 2014); Public Health: Local and Global Perspectives (Cambridge University Press, 2016, second edition in 2019, third edition in 2023); and Social Determinants of Health (Oxford University Press, 2019). Pranee was a general editor of a book series, HIV/AIDS and Cross-Cultural Research. The series was published by Springer in the Netherlands between 2012–2020. Her two books in the series were published by Springer in 2013. These were Stigma, Discrimination and Living with HIV/AIDS and Women, Motherhood and Living with HIV/AIDS. The third one in the series is Children, Young People and Living with HIV/AIDS: A Cross-Cultural Perspective, published in 2016. Currently, she is working on several handbooks on health behaviour, health promotion and illness prevention, which will be published by Springer. viii

About the editor  ix Pranee has also written and edited a number of research method books. Her first research method book was Qualitative Research Methods: A Health Focus (with Douglas Ezzy, Oxford University Press, 1999); the second edition of the book was titled Qualitative Research Methods (2005); the third edition was published in 2009; the fourth edition was published in 2013, and the fifth edition was published in 2020. Pranee has also published a book on doing qualitative research online: Health Research in Cyberspace: Methodological, Practical and Personal Issues (Nova Science Publishers, 2006). Her other books include Researching the Vulnerable: A Guide to Sensitive Research Methods (Sage, 2007); Undertaking Sensitive Research: Managing Boundaries, Emotions and Risk (with Virginia Dickson-Swift and Erica James, Cambridge University Press, 2008); Knowing Differently: Arts-Based and Collaborative Research Methods (with Jean Rumbold, Nova Science Publishers, 2008); Doing Cross-Cultural Research: Ethical and Methodological Issues (Springer, 2008), Performing Qualitative Cross-Cultural Research (Cambridge University Press, 2010); Research Methods in Health and Evidence-Based Practice (Oxford University Press, 2010, 2013, 2017, 2022); Focus Group Methodology: Principles and Practice (Sage, 2011, online version in 2016); and Using Participatory Qualitative Research Methodologies in Health (with Gina Higginbottom, Sage, 2015). In 2019, her Handbook of Research Methods in Health Social Sciences was published by Springer. She has recently published a number of books, including How to Conduct Qualitative Research in Social Science (Edward Elgar, 2022), Handbook of Qualitative Cross-Cultural Research: A Social Science Perspective (Edward Elgar, 2023), and Handbook of Social Science in Global Public Health (Springer, 2023).

Contributors

Arosha S. Adikaram is the chair Professor of human resource management at the University of Colombo, Sri Lanka. Her research interest lies in gender in organisations, diversity and inclusion, employee voice, industrial relations and harassment at workplaces. Godwin Arku is a professor in theDepartment of Geography and Environment, University of Western Ontario. Godwin’s research spans ‘urban’ and ‘economic’ sub-divisions of human geography, especially as they relate to the transformation of urban systems in a changing global environment. Amélia Augusto holds a PhD in Sociology from the University of Beira Interior. She is an Associate Professor at University of Beira Interior and researcher at ISCTE-CIES - Instituto Universitário de Lisboa, Centro de Investigação e Estudos de Sociologia, Lisbon, Portugal Fábio Rafael Augusto is a sociologist (PhD), serving as a Research Fellow at the Instituto de Ciências Sociais, Universidade de Lisboa (ICS-ULisboa), and as a Guest Lecturer at the Instituto Superior de Ciências Sociais e Políticas, Universidade de Lisboa (ISCSP-ULisboa). His research focuses on vulnerable populations, sensitive topics, and food-related issues. Jennifer A. Bailey is the director of research and a principal research scientist at the Social Development Research Group at the University of Washington. Jennifer’s research is focused on understanding malleable predictors of important social and public health outcomes, such as substance use, problem behaviour, and homelessness in adolescence and adulthood. Elmond Bandauko is an interdisciplinary urban scholar whose research revolves around three themes: urban informality, urban inclusion and exclusion and built environment and quality of life (including issues such as sense of place, sense of community). He holds a PhD in Geography from the University of Western Ontario, Canada. He is a Postdoctoral Associate (just and equitable cities) at the Cornell Mui Ho Center for Cities, Cornell University. Zana Bayley is a research professional working in the field of palliative care. Zana’s interests include end-of-life care, equity of access to care, perspectives of death and dying, and death and dying education. Stephanie Begun is an associate professor and Endowed RBC Chair of Applied Social Work Research at the University of Toronto. She is Co-Founder and Co-Director of the Youth Wellness Lab. Her program of research focuses on improving the health and well-being of young people, with particular attention paid to issues of reproductive justice and homelessness. Annette Binder is a medical doctor working at the University Hospital for Psychiatry and Psychotherapy in Tübingen, Germany. Her overall research interests are health services research in the fields of addiction research, women’s health and qualitative research methods. Julia Böcker is a sociologist at the Institute of Sociology and Cultural Organisation within Leuphana University Lüneburg (Germany) and in the University Research Priority Program x

Contributors  xi Human Reproduction Reloaded at the University of Zurich (Switzerland). Her scholarly interests lie in the fields of cultural sociology, medical anthropology and qualitative methods. Erica Borgstrom is a professor of medical anthropology at the Open University, where she specialises in death studies and leads open thanatology. Her research predominately examines, often using ethnographic methods, how palliative and end-of-life care are practised and structured. She also works on and supports others researching experiences of death and bereavement, and is interested in how positionality influences research practices. Hannah Bows is an associate professor in criminal law and deputy dean of Durham Law School. She is deputy-director of the Centre for Research into Violence and Abuse (CRiVA) at Durham University. Most of her research concerns interpersonal violence, primarily domestic abuse, sexual violence and homicide. The bulk of this work has been on older victims and offenders. Samantha Burton is a gender and health sociologist, whose research interest seeks to investigate how formal institutions produce disadvantages and poor health outcomes for individuals. Her research focuses on how toxic masculinity has become a catch-all phrase to describe all men. Sam’s research allows her to speak to how one-dimensional Australian representations of men and boys is detrimental to their overall health and well-being. Ekkehard Coenen is a research associate at the Chair of Cultural and Media Sociology at Bauhaus-Universität Weimar. He studied cultural media research, media culture, sociology and musicology. His work focuses on the sociology of culture, the sociology of death, dying and bereavement, the sociology of knowledge, the sociology of violence and qualitative social research methods. Cristyn Davies is a research fellow at the University of Sydney, Australia. Cristyn is president of the Australian Association for Adolescent Health, co-chair of the Human Rights Council of Australia and co-convenor of the Child and Youth Health Special Interest Group of the Public Health Association of Australia. She has expertise in gender, sexuality, and sexual and reproductive health. Jordan Dawson is a lecturer in criminology in the School of Social Sciences at Swansea University, Wales. His research interests include sex work, policing, masculinities and the use of technology in qualitative research. Judith A. Dean is a Principal Research Fellow at the University of Queensland. She has over 25 years of national and international experience as a Registered Nurse/Midwife and researcher in sexual and reproductive health. Her research focuses on equity of access to sexual and reproductive health and HIV care for priority populations using mixed methods community-based participatory approaches. Catarina Delaunay holds a PhD in Sociology from the School of Social and Human Sciences of the NOVA University of Lisbon. She is an Assistant Researcher at CICS.NOVA – Interdisciplinary Centre of Social Sciences and an Adjunct Professor at Autónoma University of Lisbon. Angela Dwyer is an Associate Professor in Police Studies and Emergency Management at the University of Tasmania. Her research on how sexuality, gender and sex diversity influences

xii  Handbook of sensitive research in the social sciences policing contributed to founding the discipline area of queer criminology. She is a dedicated critical criminologist deeply invested in changing how criminal processing systems protect vulnerable and marginalised people caught up in these systems. Declan Fahie is a teacher educator at University College Dublin (UCD) where he is Director of School Placement and teaches sociology of education. A qualified primary school teacher, Declan has published nationally and internationally on workplace bullying, queer issues in education, toxic leadership and research methodologies. Yibo Fan is a PhD candidate in the School of Social Sciences at Swansea University, Wales. His research is focused on the experiences of Chinese male survivors of child sexual abuse. Lucas Calais Ferreira is a Senior Research Fellow at the University of Melbourne. He holds a Postdoctoral Fellowship from Suicide Prevention Australia. His research focuses on the health and healthcare trajectories of disadvantaged young people, particularly those with a history of involvement with the justice system. Florian Fischer is an expert in issues related to public health, global health, and digital health. He heads a division on health services research and participatory research at the Bavarian Research Center for Digital Health and Social Care, which is a research institution at the University of Applied Sciences Kempten. James A. Fowler is a PhD candidate at the University of Queensland. James’ research focuses on harnessing lived experience to meaningfully co-design health interventions and health services. James works alongside a range of communities, including LGBTQIA+ communities, neurodivergent communities, and with university students. Luís Gouveia holds a degree and a PhD in Sociology from the School of Social and Human Sciences of the NOVA University of Lisbon. He is a collaborator researcher at CICS. NOVA – Interdisciplinary Centre of Social Sciences and a postdoctoral scholarship holder at ADVANCE, Advanced Research Center in Management – ISEG. Gabriele Griffin is Professor of Gender Research at Uppsala University, Sweden, and Extraordinary Professor of Gender and Africa Studies at the University of the Free State, South Africa. She is coordinator of the Swedish Research Council funded research school ‘Gender, Humanities and Digital Cultures’ (2023–2028). Her research centres on women’s cultural production. Marie Habito is a postdoctoral researcher at the Burnet Institute and the Centre for Adolescent Health in Victoria, Australia. Marie’s research aims to improve understanding of social determinants of adolescent health and well-being to inform evidence-based action, with a special focus on adolescent pregnancy and sexual and reproductive health in resource-constrained settings in Southeast Asia and the Pacific. Richard Hall is Professor of Education and Technology at De Montfort University, and the research and evaluation lead for Decolonising DMU. A UK National Teaching Fellow, Richard writes about the political economy of higher education at http://richard​-hall​.org. Esmée Hanna is a Reader (Associate Professor) in Health and Wellbeing in Society at De Montfort University. With a background in sociology, Esmée’s research interests are around

Contributors  xiii qualitative psychosocial explorations of gender, health and the body. Her work has a particular focus on topics which are stigmatised or groups who are marginalised. Jessica A. Heerde is an Associate Professor and National Health and Medical Research Council Emerging Leadership Fellow at the University of Melbourne. She leads a program of research examining risk and protective factors that define pathways to and out of homelessness, as well as assessing health and mortality following contact with the homelessness service system in Australia. Jessica Heesen leads the research focus Media Ethics, Philosophy of Technology & AI at the International Center for Ethics in the Sciences and Humanities (IZEW) at the University of Tübingen. Her research covers a broad spectrum of ethical and philosophical aspects of digitalisation. Eveliina Heino is a postdoctoral researcher at the Åbo Akademi University and university lecturer of Social Work at the University of Helsinki. Her research focuses on diversity, migration and social and health services. She is currently working on research related to the consequences of the Covid-19 pandemic and linguistic vulnerability. Ana Patrícia Hilário is an Assistant Professor at Universidade de Évora and a Researcher at Centro Interdisciplinar de Ciências Sociais (CICS.NOVA,UÉvora, Universidade de Évora). She had been involved in several national and international projects in the fields of gender, health and the life course. She has a PhD in Sociology from Royal Holloway, University of London. Her current main research interests focus on the sociology of health and illness, the sociology of gender and the sociology of childhood and youth. Olivia Hollingdrake is a Senior Lecturer at the Queensland University of Technology. Her program of community participatory qualitative research focuses on reducing stigma as a barrier to health service access for people living with HIV, women experiencing domestic and family violence and people experiencing homelessness. Her research interests are underpinned by a 25-year nursing career in acute and cancer care settings. Maija Jäppinen is Assistant Professor of Social Work at the University of Helsinki and scientific co-leader of the Helsinki Practice Research Centre. Her research focuses on child and family social work, migration and multilingualism. She currently leads research projects on communication skills in child and family social work and on transnational child protection. Jade Levell is a Senior Lecturer in Social and Public Policy (Criminology and Gender Violence) at the University of Bristol. Research interests include adverse childhood experiences, childhood domestic violence, on-road and gang subcultures, organised crime, masculinity theory, DVA perpetrators and feminist praxis. Clifford Lewis (he/him/his) is a Marketing academic at Charles Sturt. His research focuses on inclusive marketing and research practice focusing on LGBTQIA+ people. Prior to academia, Clifford worked in senior roles in the market research industry, consulting on projects for the State and Federal Government. Tiago A. Lobo-Dos-Santos is a Doctoral degree student in Family Sciences at the University of Kentucky and a ‘la Caixa’ Foundation fellow. Tiago conducts research with/for ethnic minority

xiv  Handbook of sensitive research in the social sciences child and adolescent development, and promotes/evaluates intervention projects, policies and programs seeking to prevent undesirable outcomes and promote positive development. Sharon Mallon is a Senior Lecturer in Mental Health at the University of Staffordshire. Her research interests include social approaches to understanding death by suicide and exploring the impact of suicide bereavement, particularly among young people. She is also interested and published around the needs of vulnerable students and teaching sensitive research topics or those likely to trigger challenging emotions. Jari Martikainen holds a PhD in art history and a DSocSc in social psychology. He is an associate professor in social psychology at the University of Eastern Finland. He uses visual, multimodal and arts-based methods to research migration, intergroup relations and populist communication. Currently, he leads an arts-based research project focusing on migrant and Finnish young people’s intercultural encounters in Finland. Matthias Meitzler is a research associate at the International Centre for Ethics in the Sciences and Humanities at the Eberhard Karls University of Tübingen. He studied sociology, psychoanalysis and history. His research concentrates on qualitative methods, media research, and the sociology of knowledge, the body, emotions, ageing and death. Joana Mendonça is a post-doctoral fellow at the Instituto de Ciências Sociais, Universidade de Lisboa (ICS-ULisboa). She has a PhD in Psychology from ISCTE-IUL. She had been involved in both national and international projects in the field of health, ageing and ageism. Lorena Molnar is junior lecturer at University of Lausanne and a scientific fellow at School of Social Work Fribourg (HETS‑FR), HES‑SO, University of Applied Sciences and Arts Western Switzerland. She specialises in victimisation and delinquency of vulnerable groups as well as mixed-methods research. Kristi Morrison is a PhD student in the Prevention Science program at Washington State University. Her research interests are in parent-based interventions that reduce negative outcomes and promote positive outcomes in adolescence, and the dissemination of evidencebased interventions into community settings. Sam Murphy is a Senior Lecturer in Health Studies at the Open University. Her research interests span the field of death and dying but her focus is often on reproductive loss, specifically stillbirth. She has also undertaken scholarship projects around open and distance learning. Barbara Barbosa Neves is an award-winning sociologist of technology and ageing. She is an internationally recognised expert on loneliness, social isolation, digital inequalities and sensitive research with older people. Barbara is a Senior Horizon Fellow at the Sydney Centre for Healthy Societies, School of Social and Political Sciences, University of Sydney, Australia. Laura Patterson is a PhD student and a senior social worker in adoption. She has a Masters in Social Work and a Masters in Child and Adolescent Mental Health. Laura loves to travel, spend time with family and walk her labradoodle. Lindsay Pearce is Research Fellow, Murdoch Children’s Research Institute and Curtin University. Lindsay’s research focus is on the health and healthcare experiences of vulnerable populations including people who use drugs, people who are homelessness, people living with

Contributors  xv HIV, and people in contact with the criminal justice system, using both qualitative and data linkage methods. Nicole Peel is a senior lecturer in Recreation Therapy at Western Sydney University, Australia. She has extensive experience working to improve the health of individuals and communities as a clinician and leadership roles. Her research focuses on the use of leisure with disadvantaged groups to assist in progressing their lives within complex and complicated support systems. James Pickles is a Criminologist who focuses on violence against minority communities, specifically anti-LGBTQ+ hate crime. James has published his work in well-established international journals such as Policing & Society, Journal of LGBT Youth, Qualitative Research, and International Review of Victimology. Alongside publishing empirical data, he has also published methodological commentaries on ethical research. Arianne Reis is an Associate Professor at the School of Health Sciences, Western Sydney University. Her teaching and research work aims to contribute to a more just society, where good health and well-being are human rights afforded to all. Her current research focuses on the ways leisure can promote well-being and social justice. She has also developed a particular interest in mental health, mental health literacy and suicide prevention. Nina Reynolds (she/her/hers) is a Marketing academic at the University of Wollongong. Her research considers marketing/consumer behaviour in the context of individual and social wellbeing. She is also interested in researching research methods. Katja A. Rießenberger is a research associate at University of Applied Sciences Kempten and a doctoral candidate at the Dept. of Science Technology and Society (STS) at Technical University of Munich. With her academic background in Social Work, she received her M.Sc. as a Fulbright scholar in the US. Since 2019, she has been involved in national and international research projects to develop gerontechnologies. Martin Robb is a Senior Lecturer in the School of Health, Wellbeing and Social Care at the Open University (UK), where his research has focused on issues of gender, identity and care. He is the author of Men, Masculinities and the Care of Children: Images, Ideas and Identities (Routledge, 2020), a co-editor of the journal Children & Society, and host of the Careful Thinking podcast. Tony Rossi is the Deputy Dean of Western Sydney University School of Health Sciences. His research is about how people relate to their world through life and work. He has published in teacher education, teachers’ work, medical education, community sport, family feeding practices and physical activity in marginalised communities, all from a qualitative perspective and underpinned by sociocultural and sociopolitical theories. Farnaz Sabet is a child and adolescent psychiatrist with extensive experience in global health practice and policy. She has worked for government, international non-government organisations, and academia across Africa, the Middle East, Southeast Asia and the Pacific. Amy M. Salazar is an Associate Professor at the Washington State University. Dr Salazar’s area of expertise is in developing and testing interventions for children and young people with or at risk of child welfare system involvement. She is particularly interested in evidence-based interventions designed to support youth transitioning from foster care to adulthood.

xvi  Handbook of sensitive research in the social sciences Mário J. D. S. Santos is an Integrated Researcher at CIES-Iscte, Lisbon, where he co-coordinates the Laboratory for Social Studies on Childbirth. He holds a PhD in Sociology, a MSc in Health, Medicine and Society, and a BSc in Nursing. Susan M. Sawyer holds the inaugural Geoff and Helen Handbury Chair of Adolescent Health at The University of Melbourne. She is Director of the Centre for Adolescent Health at the Royal Children’s Hospital, a World Health Organisation Collaborating Centre for Adolescent Health. Her research interests focus on health services for adolescents, longitudinal cohort studies and policy responses for adolescent health. Amie Simington is a lecturer in Criminology at Deakin University and a research assistant within the health faculty. She earned a bachelor’s degree in forensic science and criminology and an Honours degree in Criminology from Deakin University. Her Honours thesis examined media portrayals of filicide offenders in Australian news media. Miriam Sitter studied sociology and political science and completed her doctorate at the University of Hildesheim. From 2016 to 2024, she was chairwoman of a Centre for Grieving Children and Young People. In 2023, she founded the first Institute for Grief Research in Hannover, Germany, which she directs. Ingrid Stapf is a researcher in the field of Media Ethics, Child Ethics, and practical philosophy in the digital environment. She is leading the project SIKID (Security for Children in the Digital Environment) at the International Center for Ethics at the University of Tübingen. Her research currently focuses on media regulation and children´s rights online. Rebecca (Bex) Twinley is a Senior Lecturer in Occupational Therapy. In her doctoral work, she challenged the lack of acknowledgement regarding woman-to-woman rape and sexual assault. In doing so, she challenged her own pre-existing barriers and assumptions regarding subjectivity and objectivity by choosing to work from a sociological auto/biographical approach. Baldwin Van Gorp is a full professor of communication management and journalism at KU Leuven in Belgium. His main research interests include the framing of societal issues (such as refugees, dementia and mental illness) and the use of arts-based methods. He has published in Journal of Communication, Social Science & Medicine and Journalism Studies, among others. In his spare time, he is a comic book artist. Sarah Warzywoda is a PhD candidate at the University of Queensland. Her research focuses on improving access to HIV prevention for young people from priority populations at risk of HIV through understanding lived experiences to inform and improve models of care and education. Sarah’s work is guided by the principles of community-based participatory research. Catherine Wilkinson is a Reader in Childhood and Youth Studies at Liverpool John Moores University. She has an established reputation for making cutting-edge contributions, conceptually and methodologically, to research ‘with’ children and young people. Catherine’s primary research interests are: children, young people and identity; young people and community radio; and children and young people-friendly research methods. Samantha Wilkinson is a Senior Lecturer in Childhood and Youth Studies at Manchester Metropolitan University. Prior to this, she was a Lecturer in Human Geography at the same

Contributors  xvii institution. She is an interdisciplinary researcher with diverse research interests, including: alcohol consumption; young people’s im/mobilities and home care for people with dementia. She is enthusiastic about creative qualitative methods. Alex Workman is a PhD candidate at Western Sydney University with a background in criminology and public health, focusing on vulnerable populations’ well-being as survivors of intimate partner violence. His research focuses on how cultural safety can be adopted in health and criminal justice systems. He is a co-founder of the Intersectionality in law enforcement and public health special interest group (GLEPHA).

Preface

Conducting sensitive research in the social sciences requires meticulous attention to ethical considerations, methodological rigour and emotional intelligence. Sensitive research often involves topics that can evoke strong emotions, stigmatisation or ethical dilemmas, such as studies on trauma, abuse, marginalised communities or controversial social issues. Research in this area, particularly involving vulnerable populations, has garnered increased attention in recent social science literature. However, as a researcher and author in this field, I believe that even more focused and serious attention is warranted. This is because conducting sensitive research is crucial for deepening our comprehension of intricate human experiences and the elements that shape them, especially in domains frequently obscured by silence or stigma that we continue to observe across the globe today. I contend that the recent global fractures and turmoil will lead to an increase in the number of people who become vulnerable and marginalised in societies worldwide. It is crucial that their voices are heard clearly, and we must invent research methodologies that facilitate this. Additionally, it is crucial that we also hear the voices of social science researchers who do sensitive research. Since the 1960s, there has been a shift towards viewing the ‘personal as political’ (Hanna, 2014). Many researchers now discuss their personal perspectives when conducting sensitive research. We need to hear more of this, too. This conviction is the primary impetus behind the creation of this Handbook. This Handbook is divided into three parts, encompassing a total of 35 chapters. Part 1 addresses the conceptual and ethical dimensions of conducting sensitive research in the social sciences. Part 2 presents various research methodologies pertinent to this type of research and ethical concerns in sensitive research. In Part 3, readers will encounter firsthand accounts and experiences of conducting sensitive research with vulnerable, marginalised or hard-to-reach individuals or groups. Many chapters include personal narratives that provide illuminating insights. I extend my heartfelt thanks to several individuals. Firstly, I am grateful to all the contributors who diligently completed their chapters. Many of you have offered insightful and often thought-provoking discussions on conducting sensitive research and working with marginalised populations. I extend my heartfelt thanks to all of you. Importantly, I recognise that for some authors, writing about their lived experiences in conducting sensitive research can evoke the emotional burdens they carried during their work. I apologise for any distress this request may have caused, but I also hope that writing about these experiences offers a moment of relief. Special thanks go to Stephanie Hartley of Edward Elgar, who invited me to edit this book. My journey into researching and writing about sensitive research with vulnerable populations began in 2007 (see Liamputtong, 2007). Given my social vulnerabilities as a woman, single mother, migrant and Asian who was born into extreme poverty but managed to escape it through sheer luck, I developed a keen interest in writing a text about this type of research, which was quite scarce at that time, with the notable exceptions of the significant work by Raymond Lee (1993, 1995), Claire Renzetti and Raymond Lee (1993), and Joan Sieber (1992). Certainly, at that time, very few researchers discussed their personal experiences in this field. xviii

Preface  xix While supervising a PhD student on this topic, we published several papers and a book (see Dickson-Swift et al., 2008). Today, it is gratifying to witness a surge in research papers where authors share their experiences in conducting sensitive research. It was a great joy when Stephanie invited me to compile this Handbook in 2023. This Handbook brings together the experiences of various authors into a single volume. I hope it will be a valuable resource for students and researchers embarking on sensitive research or doing research with vulnerable, marginalised and hard-to-reach individuals. I dedicate this Handbook to two special individuals dear to my heart. First, to my first-born grandson, Farid Alan Pitchaya Zaid Jr., who has brought immense joy to my life. Second, to my late daughter, Emma Inturatana Rice, who left me too soon. You will always remain with me, my baby. Pranee Liamputtong Hanoi, Vietnam March 2025

REFERENCES Dickson-Swift, V., James, E., & Liamputtong, P. (2008). Undertaking sensitive research in the health and social sciences: Managing boundaries, emotions and risks. Cambridge: Cambridge University Press. Hanna, E. S. (2014). Student power! The radical days of the English universities. Cambridge: Cambridge Scholars Publishing. Lee, R. M. (1993). Doing research on sensitive topics. London: Sage. Lee, R. M. (1995). Dangerous fieldwork. Thousand Oaks, CA: Sage. Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. London: Sage. Renzetti, C. M. & Lee, R. M. (Eds) (1993). Researching sensitive topics. Newbury Park: Sage Publications. Sieber, J. E. (1992). Planning ethically responsible research: A guide for students and internal review boards. Newbury Park: Sage Publications.

1. Doing sensitive research in the social sciences: setting the scene Pranee Liamputtong

INTRODUCTION Sensitive research can be defined as any research that poses a potential risk to those being researched and/or the researcher in terms of data collection and management, as well as dissemination of findings. (Rowlands, 2021, p.1)

This Handbook focuses on conducting sensitive research with vulnerable or marginalised individuals in the social sciences. The concepts of sensitive research and vulnerable populations are socially constructed and can have various meanings for different researchers. However, there are some common definitions, such as the one mentioned above. Regardless of how we conceptualise these individuals, conducting research with them requires significant attention due to the potential for further exploitation or re-traumatisation. It certainly demands a thorough examination of our own moral and ethical considerations. In 2007, I wrote a book on sensitive research with vulnerable people (Liamputtong, 2007), a topic that was rarely discussed at the time. Recently, however, researchers have increasingly shared their experiences and insights on conducting sensitive research, as well as the impacts they have had. It is gratifying to witness this development. This Handbook compiles numerous more recent examples from the social sciences that readers will find enlightening. Readers will also learn about the challenges, rewards, and strategies that social science researchers encounter and invent when conducting sensitive research, which can be valuable for their own studies. Furthermore, readers may encounter ‘vicarious experiences’ in some chapters, where authors share the personal aspects of conducting sensitive research or working with vulnerable, marginalised or hard-to-reach individuals. This chapter sets the stage for the Handbook. I will begin by discussing the concepts of sensitive research and vulnerable people, drawing on examples from various social science literature. Then, I will address the considerations necessary when conducting sensitive research with vulnerable or marginalised individuals. The literature often emphasises the risks and harm to research participants, primarily due to ethics committee requirements for approval before conducting research. However, attention to the risks and harm faced by researchers conducting sensitive research has only recently increased. This chapter will also discuss some key issues related to this topic.

CONCEPTUALISING SENSITIVE RESEARCH AND VULNERABILITY We refer to ‘sensitive’ topics in research as those which delve into the acutely personal about someone, or that someone experiences. These are often discussed, laden with emotion and are immensely nostalgic (where positive), but can be harrowing (where negative) with the possibility of inducing

1

2  Handbook of sensitive research in the social sciences short-term psychological anguish or distress when recounting the experiences. (Silverio et al., 2022, p.2)

Social science researchers are increasingly focusing on ‘sensitive’ topics, which involve behaviour that is ‘intimate, discreditable, or incriminating’ and difficult to express openly (Lee & Renzetti, 1993: ix; Liamputtong, 2007; Dempsey et al., 2016; Rodriguez, 2018; McGowan, 2020; Powell et al., 2020; Mallon & Elliott, 2021; Díaz-Fernández et al., 2023; see also Chapters 2, 9, 10, 12, 13 & 24 in this volume). Often, sensitive topics are ‘too close for comfort’ (Sikes and Hall, 2020), difficult to speak about (Isham et al., 2019) and invoke emotional burdens (Emerald & Carpenter, 2015; Hanna, 2019; Micanovic, Stelko & Sakic, 2019; Pearlman, 2023; Williamson, 2020). Sensitive research addresses studies with potential consequences or implications that affect either the research participants directly or the broader group they represent. While all research can have consequences, certain groups may be more vulnerable to these effects (Mallon & Elliott, 2021; Díaz-Fernández et al., 2023). Sensitive research also explores ‘socially charged and contentious areas of human behaviour’ (Barnard, 2005, p.2; Powell et al., 2020), such as the impact of parental drug problems on children. Research is considered sensitive if it involves revealing private and personal behaviours or attitudes that could lead to offence, social censure, or discomfort for participants (Wellings et al., 2000; Isham et al., 2019; see also Chapters 2, 9, 10, 12, 13, 24, 32, 34 & 35). This includes topics like sexual behaviour and preferences (involving LGBTQ+ individuals and minors engaged in sex work), pregnancy loss, abortion, stigmatised illnesses (like bulimia, anorexia, and HIV/AIDS), substance use, illicit activities and stigmatised health conditions such as schizophrenia. Sensitive research encompasses a wide range of areas deemed sensitive. This includes deviant behaviours, drug use, abuse, death, violence, sexual behaviours, and taboo topics like child prostitution. Many of these sensitive topics are included in this Handbook. Sensitive research presents various risks: intrusive threats, threats of sanction, and political threats (Lee, 1993; Dempsey et al., 2016; Hanna, 2019; Díaz-Fernández et al., 2023; see also Chapter 3). Research into personal lives can be stressful and intrusive for participants. Threats of sanction can stigmatise or incriminate participants, while political threats arise from research involving societal conflicts and influential figures. Sensitive research’s implications extend beyond the immediate study, highlighting the importance of considering methodological aspects and the perspectives of both researchers and participants (Lee, 1993; Rowlands, 2021; Mallon & Elliott, 2021). The concept of sensitive research is closely linked to studies involving marginalised, vulnerable, and/or hard-to-reach populations (Arcaya et al., 2015; Munari et al., 2021; Haider, 2022). Marginalisation, considered both a process and an experience, occurs when individuals are excluded from mainstream society (Robards et al., 2020). It can result from many factors, including poverty, discrimination, and exclusion (due to homelessness status, for example). It can also be driven by structural disadvantage and institutional discrimination, which can be features of health settings (Johnson et al., 2016; Davies et al., 2021; Haider, 2022; see Chapters 8, 23 & 26). Although the concept of ‘vulnerability’ is socially constructed (von Benzon & van Blerk, 2017), there have been many defined terms used in the literature concerning sensitive research (Liamputtong, 2007; von Benzon & van Blerk, 2017). A vulnerable person is someone with reduced autonomy caused by physiological or psychological factors or disparities in status (Quest & Marco, 2003; Johnson et al., 2016; Numans et al., 2021; Haider, 2022). Vulnerable

Doing sensitive research in the social sciences: setting the scene  3 individuals include those who are unable to make personal life choices and decisions and maintain independence and self-determination (Numans et al., 2021). Consequently, vulnerable individuals may face real or potential harm and need special safeguards to protect their welfare and rights. In general, according to von Benzon & van Blerk (2017), minority, marginalised, and excluded populations are viewed as vulnerable in social, political, and economic contexts. This concept of vulnerability represents a socially constructed perception, and sometimes a reality, of these groups lacking social, political, and economic capital compared to the societal norm. Vulnerable populations are also social groups with an increased relative risk of adverse health outcomes (Mann-Feder & Goyette, 2019; Heerde & Pallotta-Chiarolli, 2020). These groups include those who are living in poverty, disenfranchised, and/or facing discrimination, intolerance, subordination, and stigma (Heerde & Pallotta-Chiarolli, 2020; Davies et al., 2021). Individuals with severe and persistent mental illness, for example, often navigate a web of social disadvantage and stigmatisation. They are among the most vulnerable members of society, facing challenges such as poor physical health, comorbid conditions, and reduced life expectancy (Harker & Cheeseman, 2016). Additionally, they have a higher likelihood of experiencing suicide, social isolation, discrimination, homelessness, and unemployment (Paton et al., 2018). The term ‘vulnerable’ broadly includes socially disadvantaged individuals. Demographic groups such as children, the unemployed, the homeless, individuals struggling with substance abuse, sex workers, migrants and refugees, and ethnic and religious minorities face specific social vulnerabilities (Quest and Marco, 2003; Andrysiak et al., 2022). The ‘vulnerable’ refers to individuals who are susceptible to coercive or undue influence, including children, pregnant women, individuals with mental disabilities, and those who are economically or educationally disadvantaged. Children face marginalisation in an adult-dominated society, leading to unequal power dynamics and increased vulnerability, especially when subjected to abusive behaviour by adults (Melrose, 2002; Punch, 2022). Legal status can also render some groups vulnerable. For instance, refugees and undocumented immigrants in the United States are excluded from accessing health and social services, often living in poverty and working in poor conditions (Birman, 2005; Ornelas et al., 2020; Doust Mohammadi et al., 2024; Liamputtong & Rice, 2024). Some individuals may be vulnerable due to ‘social vulnerability’ (Gordon, 2020). This socially vulnerable group comprises individuals who are part of marginalised social groups (Gordon, 2020). Social vulnerability stems from how these groups are perceived in society, often involving stereotypes and resulting in discrimination. Essentially, members of these groups are undervalued, leading to their interests, wellbeing, or contributions to society being disregarded. In simpler terms, these individuals face vulnerability because their risks are perceived as less significant and in need of less remediation compared to those faced by more valued members of society (Gordon, 2020). Other groups classified as vulnerable may face multiple factors compromising their autonomy and marginalising them in society. This leads to terms like ‘doubly vulnerable persons’ (Moore and Miller, 1999), ‘multi-faceted vulnerability’ (Radley et al., 2005), ‘overlapping marginality’ (Madriz, 1998), and ‘multiply marginalised’ (Davies et al., 2021; Parsons et al., 2021; Lewis-Dagnell et al., 2023). These doubly or multiply vulnerable populations can include single mothers from ethnic backgrounds living in poverty, children with complex needs, low-income black men engaging in street-based sex work, gay men living with HIV/ AIDS, young homeless Asian men with mental health issues, and individuals dependent on

4  Handbook of sensitive research in the social sciences drugs. Men who have sex with men and intravenous drug users may face double stigmatisation if involved in sex work (see Chapter 28). Based on these definitions, vulnerable groups can include children, women, the elderly, ethnic minorities, immigrants, refugees, Indigenous people, sex workers, the homeless, LGBTQ+ individuals, people with chronic illnesses, the mentally ill, caregivers of the chronically ill, and many more (see Arcaya et al., 2015; Bell et al., 2017; Marsh et al., 2017; Jamterud, 2022; Smith and Newman, 2023; Doust Mohammadi et al., 2024; see also Chapter 20). Readers can also see many ‘vulnerable’ groups discussed in this Handbook. The term ‘vulnerable’ is also often used interchangeably with ‘hard-to-reach’, ‘unreached’ and ‘hidden populations’ (Benoit et al., 2005; Dean et al., 2012; Sokol et al., 2015; Kincaid, 2019). A ‘hidden population’ is a group whose presence is not easily identified or counted based on existing knowledge and/or sampling capabilities (Kincaid, 2019; see also Chapters 11, 13, 22, 24 & 28). This is particularly relevant in research on drug trends and use patterns, and it also includes sex workers, bouncers, gang members, and individuals involved in illegal activities. Sex workers, as noted by Cecilia Benoit and colleagues (2005), are often socially and legally branded as ‘outcasts’, facing discrimination and social rejection similar to other marginalised groups. Due to societal stigma, they are often isolated from their communities, weakening their support systems and increasing their susceptibility to stress, depression, and other health issues. Nonetheless, some argue that researchers should view these groups as ‘being easier to ignore’ rather than hard to reach due to their susceptibility to social marginality, exclusion, discrimination, and oppression (see Jade-Hardy & Chakraborti, 2020; see also Chapter 28). In the context of sensitive research, vulnerable individuals refer to people who are ‘particularly susceptible to coercion or undue influence in a research setting … who may be incapable of understanding what it means to participate in research and/or who may not understand what constitutes informed consent’ (Allen, 2017, p.2). Most importantly, in research, vulnerable individuals often remain invisible or unreached due to their marginalised status, lack of opportunity to voice their concerns, fear of identity disrespect, stigma, significant responsibilities, and scepticism about research (Lor & Bowers, 2018; Behringer-Massera et al., 2019; Kincaid, 2019; Griffith et al., 2021). Women from ethnic and low socioeconomic backgrounds may be less willing and able to participate in research due to heavy responsibilities and scepticism about the value of social research (Indorewalla et al., 2021). Some vulnerable populations have urgent socioeconomic needs that hinder research participation (Indorewalla et al., 2021). Undocumented immigrants may avoid research to prevent exposure to their status (Birman, 2005). Refugees may be wary of research due to past experiences with authorities (Birman, 2005). Populations involved in illegal or culturally stigmatised behaviours, such as intravenous drug users, individuals with substance use disorders, LGBTQIA+ individuals, and people living with HIV, may also distrust research teams regarding the privacy of their personal information (Bonevski et al., 2014). For sex workers, being identified can pose a threat due to legal and social repercussions, leading to distrust of outsiders and reluctance to participate in research (Benoit et al., 2005). It is interesting to see some discussions regarding the terminology referring to vulnerable, marginalised, and hard-to-reach individuals that researchers conducting sensitive research have brought up. As Judith Dean and colleagues point out in their chapter (see Chapter 20), using descriptors like ‘vulnerable’ or ‘marginalised’ to describe individuals and communities reinforces negative, deficit-focused narratives about them. Broad, deficit-based terms such as

Doing sensitive research in the social sciences: setting the scene  5 ‘vulnerable’ can lead to further discrimination and stigmatisation of these individuals and the communities they identify with. Situated within the social determinants of health framework, Dean and colleagues propose terms such as ‘priority’ or ‘key’ populations, as this will shift the focus to a social justice or ‘strength-based’ perspective. This approach places the responsibility on researchers to go beyond merely identifying problems and conduct their studies in a way that includes the needs of individuals and communities. Regardless of how these individuals are labelled, they require special consideration due to the potential for exploitation or re-traumatisation (Pittaway et al., 2010; Powell et al., 2020; Van Leeuwen, 2018; Voith et al., 2020). Therefore, it is essential to consider several key issues when conducting research with them. I will discuss these in the next section.

DOING SENSITIVE RESEARCH: METHODOLOGICAL CONSIDERATIONS Researching sensitive topics is important as it gives a voice to many unheard groups and individuals. However, there needs to be detailed and robust protocols and processes in place to allow the participants to feel they can discuss openly their lived experience with you, in a safe and comfortable environment and with sensitivity and care from you, the researcher. (Pinto et al., 2022, p.43)

When conducting sensitive research, it is crucial to exercise utmost sensitivity. This type of research involves direct interaction with vulnerable individuals, often addressing challenging and sensitive topics within complex contexts (Rodriguez, 2018; Liamputtong, 2007, 2020). Consequently, researchers investigating sensitive topics must carefully assess the potential impact on both the participants and themselves. They must consider their methodology thoroughly to ensure that the data collection processes are sensitive to the participants’ experiences and needs (Dawson et al., 2020). The chapters in Parts Two and Three of this Handbook clearly illustrate these points. Below, I will discuss several methodological issues in sensitive research, particularly when it involves sensitive topics and/or vulnerable people. A Flexible Approach: Qualitative Enquiry Sensitive research methodologies have largely been dominated by qualitative approaches. Feminist researchers, in particular, advocate for using qualitative methods to investigate sensitive topics, as these methods have the potential to empower the participants (von Benzon & van Blerk, 2017; Mallon & Elliott, 2019; Stutterheim & Ratcliffe, 2021). Qualitative research provides a unique foundation for exploring social issues by fostering ways of asking questions that aim to understand social problems from multiple subjective perspectives (Hesse-Biber, 2017; Liamputtong, 2020; Silverio et al., 2022). Qualitative research methods are flexible and fluid, making them well-suited for understanding the meanings, interpretations, and subjective experiences of people (Liamputtong, 2007, 2019, 2020). The open-ended and in-depth nature of qualitative methods allows participants to express their feelings and experiences in their own words. This approach enables researchers to hear the voices of those who are silenced, alienated, and marginalised by the prevailing social order (Hesse-Biber, 2017). In their work on stigma, Sarah Stutterheim and Sarah Ratcliffe (2021, p.9) tell us why qualitative is needed in research concerning stigma:

6  Handbook of sensitive research in the social sciences Qualitative research is designed to capture the rich, contextualized diversity around social phenomena such as stigma by incorporating social context, nuanced multiple ‘truths’, and ‘thick’ accounts of experiences ... It thereby addresses the shortcomings of traditional positivist quantitative approaches and enables us to better understand, and address, complex questions embedded in social structures ... We argue that qualitative research, therefore, has a valuable role in mapping and disentangling the complexities of stigma.

In her study of rape survivors, Rebecca Campbell (2002) contends that if we, as researchers, create opportunities for survivors to share their experiences, we can illuminate what they have been through. She also points out that a qualitative approach provides opportunities to hear survivors’ stories in ways that quantitative research cannot match. David Preece and Ivana Lessner Lištiaková (2022, p.397) carried out research with families living with autism (parents, grandparents, and young people) in rural coastal England to give voice to their experiences. A qualitative approach was adopted to explore ‘what life was like for families living with autism in rural coastal areas …; what the challenges, barriers and benefits of these locations were; and what was their experience of informal and formal support.’ Qualitative research, according to Silverio and colleagues (2022), serves as an empirical method for investigating experiences across the lifespan that might otherwise be difficult to capture or document. It is particularly valuable for examining issues which quantitative methods are not sensitive enough to handle effectively (see Silverio et al., 2022). The qualitative approach is adopted widely in sensitive research or research involving vulnerable/marginalised/hard-to-reach individuals (Liamputtong, 2007, 2010, 2020, 2023; Mallon & Elliott, 2019; Díaz-Fernández et al., 2023). A special collection, Respecting the Voices of Individuals from Marginalised Communities in Research, edited by Michael Shevlin and Richard Rose (2022), and Fieldwork Experiences in Criminology and Security Studies, edited by Antonio DíazFernández and colleagues (2023), attest to this. Readers will also find examples in chapters in this volume. Being More Creative Researchers engaging in sensitive studies or working with vulnerable, marginalised or hardto-reach groups have advocated for more creative and innovative approaches in research (Denzin, 2000; Liamputtong, 2007, 2020; Ward & Shortt, 2018; Aldridge, 2015, 2019; Liamputtong, 2019; Jade-Hardy & Chakraborti, 2020; Jayne & Valentine, 2023; Khanolainen & Semenova, 2023; Lewis-Dagnell et al., 2023). By moving beyond traditional methodologies and exploring alternative creative approaches, researchers can uncover the nuances and complexities of sensitive topics that traditional methods may overlook (Jones et al., 2012; Jayne & Valentine, 2023). Creative methods are often effective when exploring sensitive topics, as they facilitate the expression of feelings that are challenging to articulate (Ward & Shortt, 2018). For some hard-to-reach groups, such as LGBTIQ, and some extremely sensitive issues, such as hate crime (Jade-Hardy and Chakraborti, 2020), researchers need to explore innovative approaches to engage with these communities rather than relying on traditional methods to prevent perpetuating the same marginalities by ‘easily ignoring’ these groups. Similarly, Jayne and Valentine (2023) contend that to explore new opportunities in researching alcohol, drinking, and drunkenness, it is essential to develop innovative and creative methodological strategies to allow researchers to do so (see also Chapter 27).

Doing sensitive research in the social sciences: setting the scene  7 Creative or innovative research methods diverge from traditional approaches, involving the development of new designs, concepts, and approaches (Taylor and Coffey, 2008; Liamputtong, 2019). Some researchers use the term ‘creative’ research methods interchangeably with innovative methods (see Kara, 2015; Bryant, 2016). Creative methods involve the use of imagination, which can transform how researchers conceptualise and conduct their studies (Bryant, 2016). Les Back and Nirmal Puwar (2012) suggest that imaginative methods can broaden researchers’ sociological perspectives and contribute to democratising the research process. According to Nick Wilson (2010, p.368), imagination thrives ‘at the edges’, and in the gaps, providing health and social science researchers with innovative alternatives to traditional methods. Caroline Ellis and Art Ellis and Bochner (2000) assert that imagination is crucial for research planning and is as vital as rigour in maintaining ethical practices. As demonstrated in the chapters of this Handbook, contributors have harnessed their imagination to create innovative and creative research methods. Creative/innovative research methods are also known as ‘emerging research methods’ (Hesse-Biber and Leavy, 2006; Liamputtong, 2019). These methods reflect paradigm shifts, theoretical advancements, and evolving notions of knowledge and its acquisition. Emergent methods often address research questions that conventional methods may not adequately tackle. Theoretical shifts in health and social sciences have facilitated the development of innovative methods, leading to new theoretical perspectives. Emergent methods challenge traditional ways of understanding and demand interdisciplinary engagement, often creating hybrids that borrow and adapt from various disciplines to address complex questions (HesseBiber & Leavy, 2006). Researchers’ choice of methods is shaped by epistemological and theoretical considerations, as well as moral and ethical factors (Liamputtong et al., 2022). Also, research methods, as Sharlene Hesse-Biber and Patricia Leavy contend (2006), are not rigid or unchanging. Instead, they are flexible and adaptable and can be merged to address new challenges and to bring to light previously overlooked knowledge. Arts-based methods, for example, have been found to be valuable in research with children when verbal approaches to research are inadequate (Liamputtong & Rumbold, 2008; McNiff, 2008; Leavy, 2019). Arts-based methods are seen as sensitive ways to address the needs of children and young people (Fernandez et al., 2015; Liamputtong & Fernandez, 2015; Tumanyan & Huuki, 2020; Abdulah et al., 2021, 2022). In their review of arts-based methods with youth, Marian Tumanyan and Tuija Huuki (2020, p.382) tell us that arts-based methods: recognize and make visible previously invisible experiences, acts, voices and histories; nurture change and transformation in the lives of the youth; and allow exploring the more-than-human, more-than-present and less-than-conscious aspects in the lives of youth and children – aspects that traditional study methods might not readily access.

In their research with non-heterosexual coaches, Beth Burgess and colleagues (2024, p.193) contend that creative methods such as art forms and written creations allow participants to transcend standard verbal approaches, offering them the opportunity to share insights in ways that feel authentic to them. This, what they refer to as ‘participant-driven methodology,’ encourages genuine expression and deeper engagement. According to Barker and colleagues (2012), visual and arts-based methods are effective when researching marginal and stigmatised identities that have previously been excluded from traditional methods. Visual methods

8  Handbook of sensitive research in the social sciences have the potential to capture the richness and diversity of the lived experience of marginalised (e.g., non-heterosexual) individuals, and narrative methods can achieve audience resonance through evocative writing (Armitage & Ramsay, 2020). Therefore, creative methods could be beneficial for coaching-focused research that thus far has captured limited insights and experiences of diverse, intersectional voices. Another creative method that has been widely adopted in researching sensitive issues and/ or vulnerable people is the photovoice method (Paton et al., 2018; Hawkey et al., 2021; Ussher et al., 2021; see also Chapter 10). Caroline Wang and Mary Ann Burris (1997) contend that photovoice has many advantages over other research methods. It positions community members who are research participants (rather than researchers) as experts in understanding their experiences and needs. It provides an accessible way for people from marginalised groups to represent aspects of their everyday lives not accessible to researchers through visual images, and this represents aspects of lived experience beyond what can easily be put into words. The photovoice method has grown significantly in popularity since the 1990s. A key factor in this rise is the increasing emphasis researchers place on prioritising research participants’ voices, priorities, and experiential expertise in the research process and the development of new interventions in health and social care (Chinn & Balota, 2023). In their review of the use of the photovoice method with people living with intellectual disabilities, Deborah Chinn and Bogdan Balota (2023) contend that the method offers individuals with intellectual disabilities a platform for self-representation through photography. They can receive additional support to collaborate with researchers in critically reflecting on the findings and working together on practical outcomes. Contributors to this Handbook illustrate this by adopting creative, innovative, or unconventional methods that reflect their epistemological commitments and values. They leverage their creativity and expertise to develop new approaches or refine existing ones to fit their research context and meet stakeholders’ needs. Research methods are not static but fluid and adaptable, capable of being combined or modified to address emerging issues and uncover previously marginalised knowledge, as demonstrated in the chapters of this Handbook. The Essence of Reflexivity There is a growing emphasis in social science research on topics considered more ‘sensitive’ that often involve a symbiotic process where researchers examine social phenomena that are personally significant to them (Dickson-Swift et al., 2008; Fenge et al., 2019; Tetteh, 2024; see Chapter 3 and chapters in Part 3 in this volume). What do we, as researchers, bring to our studies? What topics do we examine? How do we position ourselves concerning the research question? These questions are familiar within qualitative research methodology. Qualitative research highlights the researcher’s role as an active participant throughout all stages of the study. Consequently, the research outcomes are shaped by the relationship between the researcher and the participants, along with the meanings both parties ascribe to the phenomenon being studied (Band-Winterstein et al., 2014, p.530). The subjective nature of qualitative research, along with the researcher’s involvement, necessitates special attention during the research process. One means to address this and ensure trustworthiness is through the use of reflexivity (Finley, 2005; Band-Winterstein et al., 2014; Berger, 2015; Probst, 2015). Hence, we have witnessed the rise of writing about reflexivity in qualitative research in the social sciences, particularly in sensitive research.

Doing sensitive research in the social sciences: setting the scene  9 Generally, reflexivity is understood as the awareness of the influence that researchers have on the research participants or the topic being studied while also recognising how the research experience affects the researchers themselves (Gilgun, 2008, 2010; Band-Winterstein et al., 2014; Probst, 2015; Adikaram, 2018; Joseph et al., 2020). Engaging in reflexivity throughout the planning, conducting and writing phases of research fosters a continuous, recursive relationship between the researcher’s subjective responses and the intersubjective dynamics of the research process (Probst, 2015). Gilgun (2008) contends that reflexivity enables researchers to achieve a more comprehensive and connected understanding. Hence, it enhances the trustworthiness of our research (Finlay, 2002). According to Band-Winterstein et al. (2014), reflexivity can provide fresh perspectives and raise new questions, thus advancing the research. As Lazard and McAvoy (2020, p.167) emphasise, personal reflections can be complemented by epistemological reflexivity, which ‘moves beyond the personal to concerns with the nature, scope and limitations of knowledge’ (see also Karcher et al., 2024, p.3). Reflexivity can also turn the subjective nature of the research from a challenge into an opportunity. It can also be ‘a powerful learning experience’ for researchers (Olmos-Vega et al., 2023). Probst (2015, p.46) writes: Reflexivity is an important tool that enables the researcher to stay engaged in critical self-awareness throughout the research process. It is the embodiment of an epistemology in which the knower is always present, a way of looking that gazes outward at what is taking place while sustaining an inward gaze at the looker. More than just a vehicle for honesty or management of the research experience, reflexivity offers a means for using self-knowledge to inform and enhance the research endeavor.

In the context of sensitive research, reflexivity is defined as ‘a form of critical thinking which aims to articulate the contexts that shape the processes of doing research and subsequently the knowledge produced’ (Lazard & McAvoy, 2020, p.160). Researchers practice reflexivity by considering their partial perspective and positionality. For many social science researchers, the sensitive topics that they study are ‘increasingly intertwined with their own sensitive experiences in the research process’ (Markowska-Manista & Górak-Sosnowska, 2022, p.9). Importantly, researching sensitive topics can provoke unexpected and intense reactions (Liamputtong, 2007; Dickson-Swift et al., 2008; Gilgun, 2008; Band-Winterstein et al., 2014). Reflexivity enables researchers to document their experiences and responses (although Gilgun cautions that such reactions may not be easily ‘managed away’ by simply writing a memo). Although revealing personal situations can be challenging, it creates opportunities to explore previously unexamined but sensitive topics (Probst, 2015; Adikaram, 2018). In their recent piece, Silverio and colleagues (2022, p.9) employed private reflective journals to document their successes, challenges, and emotions. They argue that reflective journaling ‘enables field researchers to become more aware of the issues encountered during qualitative research on difficult, challenging, or sensitive topics, to be more conscious of their praxis, and to be more reflexive and adaptive in future data collection’. Lee Ann Fenge et al. (2019, p.6) add that a self-reflexive stance can also support researchers’ self-care and resilience in sensitive research contexts. Many authors in this Handbook write with reflexivity about why they undertook their research and their lived experiences of doing sensitive research that readers will find valuable. They will also learn about what it is like to carry out research in such a field.

10  Handbook of sensitive research in the social sciences

RISK AND HARM TO THE RESEARCHER Researchers may be viewed as particularly vulnerable when working with marginalised people due to a perceived increased risk of erratic or irrational behaviour on the part of the participant or indeed, more often, that the researcher will be exposed to emotional encounters that are upsetting and difficult to deal with. (von Benzon & van Blerk, 2017, p.901)

Conducting sensitive research with vulnerable and hard-to-reach people can pose significant dangers to the personal safety of the researcher (Liamputtong, 2007; Dickson-Swift et al., 2008; Cornejo et al., 2019; Fenge et al., 2019; Saeed & Griffin, 2019; Dávila & Doyle, 2020; Fohring, 2020; Sikes & Hall, 2020; Williamson et al., 2020; Buchanan and Warwick, 2021; Rudzki et al., 2022; Buchanan, 2024; Díaz-Fernández et al., 2023). These dangers stem from various factors involved in sensitive research and working with these populations. Dangers in sensitive research, often referred to as ‘dangers in fieldwork’, can arise from numerous situations (see Díaz-Fernández et al., 2023). Researchers working in different cultural and social settings may face feelings of dislocation and isolation, as well as physical dangers due to the political and physical environments. Undertaking research in any situation is challenging. However, the difficulties concerning researcher safety and data collection methods are especially complex in settings with high levels of violence and conflict (Dávila and Doyle, 2020; see a collection of Díaz-Fernández et al., 2023). In their recent piece, Dávila and Doyle (2020) tell us about collecting qualitative data in Medellín, Colombia. Although the city has recently seen a decrease in homicides, various forms of violence still impact residents’ daily lives. The experiences of both Dávila and Doyle offer valuable insights for researchers studying violence in other Latin American cities, emphasising the necessity and complexity of conducting fieldwork in volatile environments. Luis Felipe Dávila (Dávila and Doyle, 2020: 92) tells us: Homicide rates were the lowest ‘in 35 years’ when I was conducting research in Medellín. Despite this, I would encounter different forms of violence on a daily basis. On at least three occasions, I saw on a morning run the police pulling dismembered bodies from the Medellín River. On a weekly basis when leaving the University of Antioquia, I would encounter riots by encapuchados (hooded vigilantes). One afternoon when arriving at … University, I narrowly missed a targeted assassination by a sicario (trained assassin). Given these levels of violence, I was required to take certain precautions to ensure I was safe. I only conducted interviews during the daytime and researched the particular neighbourhood I was visiting beforehand. I also advised a local contact of my whereabouts for the day. Often, my housemate would remind me ‘ten cuidado’ (be careful) when I departed for interviews.

Pamela Nilan (2002) conducted ethnographic fieldwork in Bali. During her fieldwork, she encountered riots that occurred after the fall of Suharto in 1999 that posed a danger to her life. Nilan experienced extreme fear that was very difficult for her to describe in writing. But she survived. Yun Lu and colleagues (2005), researching AIDS victims in rural China, often had to travel by foot or bicycle to reach villages as no local drivers were willing to enter what they called the ‘village of plague.’ On one occasion, they rented a cart, but the driver refused to go further than five miles from the village, forcing them to walk the rest of the way. Readers may like to read a recent book entitled Navigating Fieldwork in the Social Sciences: Stories of Risk, Danger and Rewards, edited by Wadds et al. (2020), for dangers (and rewards)

Doing sensitive research in the social sciences: setting the scene  11 that researchers doing sensitive research with marginalised people encounter in their research fieldwork. Legal issues may also arise during the research process (see Díaz-Fernández et al., 2023). Participants might disclose contentious information, such as child abuse, which researchers are legally required to report. Information gathered about illegal activities like drug use may be subpoenaed for court cases (Scarce, 2001; Wright et al., 2001; Volker, 2004). Researchers have faced imprisonment for refusing to provide confidential data to authorities, as seen in the cases of Mario Brajuha and Rik Scarce. Brajuha, researching a restaurant suspected of mob arson, refused to surrender his data to protect his participants and was jailed. Scarce, researching environmental activists, was imprisoned for 159 days for not providing confidential research data to law enforcement authorities. Researchers might also experience social stigma, known as ‘stigma contagion’ (Kirby and Corzine, 1981, p.3), or ‘guilt by association’ (Miller & Tewksbury, 2001), where they are stigmatised along with the research participants in their study (Hammond & Kingston, 2014). Researchers studying homosexuality may be seen as homosexual, those studying female sex workers may be assumed to be prostitutes, and female researchers studying abortion might be assumed to have had abortions themselves. In their study with sex workers in Belize, Fisher and Ragsdale (2006, p.11) tell us that they faced stigma, with their work perceived as ‘unusual’ or ‘risqué’ compared to traditional gender norms. According to Tewksbury and Gagné (2001, p.84), stigmatised community members might believe that only similarly stigmatised people would be interested in their experiences, leading to assumptions about the researchers’ identities. While researching motherhood among HIV-positive women in Thailand, the participants assumed I was also HIV-positive. They noted that HIV-negative women would not be interested in their stories. As sex work researchers, Natalie Hammond and Sarah Kingston (2014, p.2) encountered social stigma both in their professional roles as researchers and in their personal lives. They write: we as sex work researchers experienced the stigma commonly related to sex work: we experienced ‘stigma by association’ … we demonstrate how our close relationship with our topic of study became a vehicle by which sex work stigma spread onto us. Our experience of negative or critical responses to our work shares some similarities to the treatment of sex workers. As with the ‘whore stigma’ that sex workers often face, our research was seen as dishonourable and ‘no good’ ... The notion that … sex workers are considered ‘undeserving victims’ became fused with us as sex worker researchers that led to colleagues and those in our personal spheres to question the validity of someone studying an ‘undeserving topic.’

It is noteworthy that researchers with marginalised identities tend to experience more risk and harm than those from non-marginalised backgrounds (Rudzki et al., 2022). Researchers from racial and ethnic minorities are more likely to encounter prejudice and conflict that can affect their productivity or pose risks to their physical health and safety (Viglione, 2020; Demery & Pipkin, 2021; McGill et al., 2021). Researchers who are members of LGBTQIA+ communities may have to conduct field research in unwelcoming or dangerous areas, including countries where their identities are criminalised (Olcott & Downen, 2020). Researchers with disabilities encounter unique challenges in field research, and these challenges are seldom addressed. Moreover, individuals who belong to multiple marginalised groups may face compounded disadvantages due to the intersections of their identities (Clancy et al., 2017). However, the

12  Handbook of sensitive research in the social sciences position of marginalised researchers has not been extensively explored in the literature. This topic warrants significantly more attention within sensitive research domains.

EMOTIONAL IMPACT: ‘LABOUR PAINS’ Because of topics or issues that might be considered intrusive and/or harmful, sensitive research carries a particularly high risk of moral and mental harm for both research participants and researchers (Butler et al., 2017; Cornejo et al., 2019; Fenge et al., 2019; Hilario & Augusto, 2022; Díaz-Fernández et al., 2023; Tetteh, 2024). More researchers are beginning to discuss the emotional impact of conducting sensitive research in the literature (see Campbell, 2002; Melrose, 2002; Hallowell et al., 2005; Butler et al., 2017; Hordge-Freeman, 2018; Fenge et al., 2019; Hanna, 2019; Mallon & Elliott, 2019; Fohring, 2020; Butler-Rees & Robinson, 2020; Waters et al., 2020; Jones & Murphy, 2021; Rogers-Shaw et al., 2021; DíazFernández et al., 2023; MacIver et al., 2024; see also Chapters 1, 3, 6, 21, 23, 24, 32, 34 & 35 in this volume). This is mainly because qualitative researchers have prioritised reflexivity and conducted research which emphasises a more caring relationship with their participants (Sampson et al., 2008). This emotional strain, often referred to as ‘emotional labour’ (Hochschild, 2012), ‘labour pains’ (Liamputtong, 2007; Dickson-Swift et al., 2008), ‘secondary trauma’ (Williamson et al., 2020), or ‘vicarious traumatisation’ (McCann & Pearlman, 1990; Guerzoni, 2020; Moran & Asquith, 2020), is a significant challenge for researchers conducting sensitive issues. Margaret Melrose (2002, p.345) observes that the emotional effort involved in interviewing on sensitive topics is indeed difficult work and can be challenging and emotionally taxing. Often, it entails managing participants’ feelings about ‘disclosing’ and the emotions evoked in the researcher by ‘listening’ to such accounts of adversity in life. Researchers may experience ‘subjective distress’ because they must empathise and withstand the pain of their participants. These ‘labour pains’ are very real for many researchers working with extremely vulnerable populations. Jackson and colleagues (2013), in their research on child abuse, encounter challenging auditory and visual sensations while hearing the children’s stories. Researching child prostitution, as Melrose (2002) tells us, is an emotionally sensitive area as it involves unpredictable levels of anxiety that can be potentially threatening for both researchers and participants. Secondary distress or vicarious traumatisation tends to be raised by researchers working on seriously sensitive topics including suicide (McKenzie et al., 2016), bereavement (Butler et al., 2017), cancer (Benoot & Bilsen, 2016), violence and abuse (Nikischer, 2019) and in criminological research (Fohring, 2020; Guerzoni, 2020; Moran & Asquith, 2020; DíazFernández et al., 2023). In conducting sensitive research with vulnerable populations, researchers may experience a range of emotional reactions (Rogers-Shaw et al., 2021). Some have reported distress when participants face death or die (Campbell, 2002; Gair, 2002; Taylor et al., 2016; Six, 2020; Tetteh, 2024). Others experience emotional exhaustion (Letherby, 2000; McCosker et al., 2001; Melrose, 2002; Johnson and Clarke, 2003; Dickson-Swift et al., 2009; Ceballo, 2017) and guilt (Melrose, 2002; Warr, 2004). Researchers often cry with their participants during interviews (Lather, 2001; Tetteh, 2024), feeling helpless, pained, and angry (Campbell, 2002; Melrose, 2002; Pio & Singh, 2016; Roger-Shaw et al., 2021). During my interviews with Cambodian refugees in Melbourne about their health beliefs and practices, many recounted

Doing sensitive research in the social sciences: setting the scene  13 the severe hardships they faced under the Khmer Rouge regime in Cambodia. They described witnessing the killings of family members and the deaths of loved ones firsthand. These conversations were often emotional, with both the refugees and myself in tears. Hearing about the atrocities they endured was profoundly difficult for me. Research involving homeless individuals can be characterised as ‘emotionally demanding’ due to the significant mental, emotional, and physical energy required, which may impact or deplete the health and well-being of the researchers (Kumar & Cavallaro, 2017; see Chapter 26). Dawn Mannay (2018) conducted a four-year study with marginalised mothers and their daughters, and she experienced overwhelming helplessness and depression even after completing the fieldwork. Ellsberg and Heise (2005, p.42) tell us about the emotional burden of hearing women’s repeated stories of despair, physical pain, and degradation. They describe the impact that listening to these violent narratives has had on them: When I heard stories about women [sic] being beaten and tied up, I would leave there feeling desperate … I would be a wreck, and my supervisor would tell me ‘get a hold of yourself, you cry for every little thing.’ But how could I control myself? I couldn’t stand it … I would try, but sometimes it was impossible, and I would burst into tears during the next interview.

Readers will learn about these labour pains from several chapters of this Handbook (see Chapters 1, 3, 6, 21, 23, 24, 32, 34 & 35) and in the collection of Díaz-Fernández et al. (2023). Despite these challenges, some researchers find their work rewarding (Hanna, 2019; Mollard et al., 2020; Nelson, 2020; Waters et al., 2020; Williamson et al., 2020; Roger-Shaw et al., 2021; Dennard et al., 2021). Positive aspects include a sense of purpose, empowerment, healing, and the privilege of sharing intimate details of participants’ lives (Dickson-Swift et al., 2008). Rogers-Shaw and colleagues (2021, p.21 of 26) sum this up nicely: We learned that despite the challenges of conducting emotionally difficult research, such work often offers the greatest opportunities for making life better.

CONCLUSION AND FUTURE DIRECTIONS This Handbook demonstrates that certain research questions can only be addressed by engaging with vulnerable individuals or groups. This necessitates that sensitive researchers initiate enquiries with these populations. Researching sensitive topics that also involve vulnerable individuals presents unique and often difficult challenges. Consequently, many researchers still deliberately exclude vulnerable/marginalised people from their studies. Reasons for this exclusion might involve concerns about the research’s complexity, fear that it may not gain ethical approval, challenges in accessing these groups, or doubts about the credibility of the findings (Liamputtong, 2007, 2020; Chan et al., 2015). As a result, the needs and concerns of vulnerable people are often overlooked in the scientific literature (Moore & Miller, 2000). In our postmodern world, it is our duty as responsible researchers to undertake studies on sensitive topics involving vulnerable segments of society. As Joan Sieber and Barbara Stanley (1988) have said, sensitive research tackles some of society’s most urgent social issues and policy challenges. Therefore, if we, as sensitive researchers, shy away from controversial topics solely because they are difficult, it is an evasion of our responsibility. We must find ways to amplify the voices of vulnerable people, and this Handbook aims to assist researchers in

14  Handbook of sensitive research in the social sciences achieving this. As readers progress through the volume, it will become clear that conducting research with vulnerable populations is feasible, and although it is challenging, it can also provide some rewards to enrich our lives. Sensitive researchers are dedicated to not only hearing but also giving voice to vulnerable people as a crucial step towards empowering them (Cosgrove & McHugh, 2000; Ashby, 2011; Fenge et al., 2019; Facca et al., 2020; Pinto et al., 2022; Stafford et al., 2021; Lewis-Dagnell et al., 2023; Sarkadi et al., 2023). Researching sensitive topics frequently challenges societal norms and sparks critical discussions, which can result in meaningful social change (Fine et al., 2000; Fontes, 2004). By doing so, we can help many vulnerable individuals gain better opportunities to improve their lives and well-being. As Moore and Miller (1999, p.1040) said some time ago, ‘only when vulnerable groups receive the appropriate research attention will their care and quality of life be enhanced’. This is still very true now when we witness so many vulnerable and marginalised people in every corner of the world.

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16  Handbook of sensitive research in the social sciences Davies, C., Robinson, K. H., Metcalf, A., Ivory, K., Mooney-Somers, J., Race, K., & Skinner, S. R. (2021). Australians of diverse sexual orientations and gender identities. In T. Dune, K. McLeod, & R. Williams (eds), Culture, diversity and health in Australia (pp.213–231). Routledge. Dávila, L.F., & Doyle, C. (2020). Insider and outsider fieldwork challenges in Medellín, Colombia. International Journal for Crime, Justice and Social Democracy, 9(3), 87–99. https://doi​.org​/10​.5204​ /ijcjsd​.v9i3​.1207. Dawson, J., Einion-Waller, A., & Jones, D. (2020). Instant messaging: A novel means of facilitating the participation of hard-to-reach groups in sensitive topic research. Qualitative Research Journal, 21(2), 206–216. Dean, J. A., Wollin, J., Stewart, D., Debattista, J., & Mitchell, M. (2012). Hidden yet visible: Methodological challenges researching sexual health in Sudanese refugee communities. Culture, Health & Sexuality, 14(8), 911–924. https://doi​.org​/10​.1080​/13691058​.2012​.709639. Demery, A.-J. C. & Pipkin, M. A. (2021). Safe fieldwork strategies for at risk individuals, their supervisors and institutions. Nature Ecology & Evolution, 5, 5–9. Dempsey, L., Dowling, M., Larkin, P., & Murphy, K. (2016). Sensitive Interviewing in Qualitative Research. Research in Nursing & Health, 39(6), 480–490. https://doi​.org​/10​.1002​/nur​.21743. ​Dennard, S., Tracy, D. K., Beeney, A., Craster, L., Bailey, F., Baureek, A., Barton, M., Turrell, J., Poynton, S., Navkarov, V., & Kothari, R. (2021). Working in a prison: Challenges, rewards, and the impact on mental health and well-being. The Journal of Forensic Practice, 23(2), 132–149. https:// doi​.org​/10​.1108​/JFP​-12​-2020​- 0055. Denzin, N. (2000). Aesthetics and the practices of qualitative inquiry. Qualitative Inquiry, 6(2), 256– 265. https://doi​.org​/10​.1177​/107780040000600208. Díaz-Fernández, A. M., Del-Real, C., & Molnar, L. (eds.) (2023). Fieldwork experiences in criminology and security studies. Cham, Switzerland: Springer. Dickson-Swift, V., James, E., & Liamputtong, P. (2008). Undertaking sensitive research in the health and social sciences: Managing boundaries, emotions and risks. Cambridge: Cambridge University Press. Dickson-Swift, V., James, E. L., Kippen, S., & Liamputtong, P. (2009). Researching sensitive topics: qualitative research as emotion work. Qualitative Research, 9(1), 61–79. https://doi​.org​/10​.1177​ /1468794108098031. Doust Mohammadi, M. M., Salmani, I., & Farahmandnia, H. (2024). Social vulnerabilities among immigrants and refugees in emergencies and disasters: A systematic review. Frontiers in Public Health, 11, 1235464. https://doi​.org​/10​.3389​/fpubh​.2023​.1235464. Driessnack, M. & Furukawa, R. (2012). Arts-based data collection techniques used in child research. Journal for Specialists in Pediatric Nursing, 17(1), 3–9. Ellis, C. S. & Bochner, A. (2000). Autoethnography, Personal Narrative, Reflexivity: Researcher as Subject. In The Handbook of Qualitative Research Ellsberg, M. & Heise, L. (2005). Researching violence against women: A practical guide for researchers and activists. Washington, DC: World Health Organization. Emerald, E. & Carpenter, L. (2015). Vulnerability and emotions in research: Risks, dilemmas, and doubts. Qualitative Inquiry, 21(8), 741–750. Facca, D., Gladstone, B., & Teachman, G. (2020). Working the Limits of “Giving Voice” to Children: A Critical Conceptual Review. International Journal of Qualitative Methods, 19, 1–10. https://doi​.org​ /10​.1177​/1609406920933391. Facca, D., Smith, M. J., Shelley, J., Lizotte, D., & Donelle, L. (2020). Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review. PloS one, 15(8), e0237875. https://doi​.org​/10​.1371​/journal​.pone​.0237875. Fenge, L. A., Oakley, L., Taylor, B., & Beer, S. (2019). The impact of sensitive research on the researcher: Preparedness and positionality. International Journal of Qualitative Methods, 18, 1609406919893161. https://doi​.org​/10​.1177​/1609406919893161. Fernandez, S., Liamputtong, P., & Wallersheim, D. (2015). What makes people sick: Burmese refugee children’s understanding of health and illness. Health Promotion International, 30(1), 151–161. https://doi​.org​/10​.1093​/ heapro​/dau082.

Doing sensitive research in the social sciences: setting the scene  17 Fine, M., Weis, L., Weseen, S., & Wong, L. (2000). For whom? Qualitative research, representations, and social responsibilities. In N. K. Denzin & Y. S. Lincoln (eds), Handbook of Qualitative Research (pp.107–132). Sage. Finlay, L. (2002). Negotiating the swamp: the opportunity and challenge of reflexivity in research practice. Qualitative Research, 2(2), 209–230. https://doi​.org​/10​.1177​/14687941020020020​5. Finley, S. (2005). Arts-based inquiry: performing revolutionary pedagogy. In N. K. Denzin & Y. S. Lincoln (eds), The Sage Handbook of Qualitative Research, 3rd edition (pp.681–694). Thousand Oaks, CA: Sage. Fisher, C. B., & Ragsdale, K. (2006). Goodness-of-fit ethics for multicultural research. In J. E. Trimble, & C. B. Fisher (eds), Handbook of ethical research. Fohring, S. (2020). The risks and rewards of researching victims of crime. Methodological Innovations, 13(2), 1–11. https://doi​.org​/10​.1177​/2059799120926339. Fontes, L. A. (2004). Ethics in family violence research: Cross-cultural issues. Sage. Gair, S. (2002). In the thick of it: A reflective tale from an Australian social worker/qualitative researcher. Qualitative Health Research, 12(1), 130–139. Gilgun, J. F. (2008). Lived experience, reflexivity, and research on perpetrators of interpersonal violence. Qualitative Social Work, 7(2), 181–197. Gilgun, J. F. (2010). Reflexivity and qualitative research. Current Issues in Qualitative Research, 1(2), accessed 19 September 2024 at https://www​.scribd​.com​/document​/35787948​/ Reflexivity​-and​ -Qualitative​-Research. Gordon, B. G. (2020). Vulnerability in research: Basic ethical concepts and general approach to review. Ochsner Journal, 20(1), 34–38. https://doi​.org​/10​.31486​/toj​.19​.0079. Griffith, D. M., Bergner, E. M., Fair, A. S., & Wilkins, C. H. (2021). Using mistrust, distrust, and low trust precisely in medical care and medical research advances health equity. American Journal of Preventive Medicine, 60(3), 442–445. Guerzoni, M. (2020). The emotional labour of researching child sexual abuse and child protection: A postdoctoral reflection. Methodological Innovations, May-August, 1–8. https://doi​.org​/10​.1177​ /2059799120926342. Haider, S. (2022). Sensitive social work research. In S. Haider (ed.), Sensitive research in social work. Cham: Palgrave Macmillan. https://doi​.org​/10​.1080​/13691457​.2023​.2284670. Hallowell, N., Lawton, J., & Gregory, S. (2005). Reflections on research: The realities of doing research in the social sciences. Berkshire: Open University Press. Hammond, N. & Kingston, S. (2014). Experiencing stigma as sex work researchers in professional and personal lives. Sexualities, 17(3), 329–347. Hanna, E. (2019). The emotional labour of researching sensitive topics online: Considerations and implications. Qualitative Research, 19(5), 524–539. https://doi​.org​/10​.1177​/1468794118781735. Harker, K. & Cheeseman, H. (2016). The stolen years: Mental health and smoking action report, accessed 19 September 2024 at https://ash​.org​.uk​/resources​/view​/the​-stolen​-years. Hawkey, A. J., Ussher, J., Liamputtong, P., Perz, J., Marjadi, B., Sekar, J., Schmied, V., Dune, T., & Brook, E. (2021). Trans women’s responses to sexual violence: Vigilance, resilience and need for support. Archives of Sexual Behavior, 50(7), 3201–3222. Heerde, J. A. & Pallotta-Chiarolli, M. (2020). “I’d rather injure somebody else than get injured”: An introduction to the study of exposure to physical violence among young people experiencing homelessness. Journal of Youth Studies, 23(4), 406–429. http://dx​.doi​.org​/10​.1080​/13676261​.2019​ .1610558. Hesse-Biber, S. N. (2017). The practice of qualitative research (3rd edn). Thousand Oaks, CA: Sage. Hesse-Biber, S. & Leavy, P. (2005). The practice of qualitative research (1st edn). Thousand Oaks, CA: Sage. Hilário, A. P., & Augusto, F. R. (eds) (2020). Practical and ethical dilemmas in researching sensitive topics with populations considered vulnerable. Basel: MDPI. Hochschild, A. R. (2012). The managed heart commercialization of human feeling. Berkeley, CA: University of California Press. Hordge-Freeman, E. (2018). “Bringing your whole self to research”: The power of the researcher’s body, emotions, and identities in ethnography. International Journal of Qualitative Methods, 17(1). https:// doi​.org​/10​.1177​/1609406918808862.

18  Handbook of sensitive research in the social sciences Indorewalla, K. K., O’Connor, M. K., Budson, A. E., Guess DiTerlizzi, C., & Jackson, J. (2021). Modifiable barriers for recruitment and retention of older adults participants from underrepresented minorities in Alzheimer’s disease research. Journal of Alzheimer’s Disease, 80(3), 927–940. Isham, L., Bradbury-Jones, C., & Hewison, A. (2019) Reflections on engaging with an advisory network in the context of a ‘sensitive’ research study, International Journal of Social Research Methodology, 22(1), 67–79. https://doi​.org​/10​.1080​/13645579​.2018​.1494971. Jackson, S., Backett-Milburn, K., & Newall, E. (2013). Researching distressing topics: Emotional reflexivity and emotional labour in the secondary analysis of children and young people’s narratives of abuse. Sage Open, 3, 2. https://doi​.org​/10​.1177​/2158244013490705. Jade-Hardy, S. & Chakraborti, N. (2020). Blood, threats and fears: The hidden worlds of hate crime victims. Palgrave Pivot. Jamterud, S. M. (2022). Acknowledging vulnerability in ethics of palliative care – A feminist ethics approach. Nursing Ethics, 29(4), 952–961. https://doi​.org​/10​.1177​/09697330211072. Jayne, M. & Valentine, G. (2023). Beyond moralising, Disciplining and normalising discourses: re-thinking geographies of alcohol, drinking, drunkenness. Dialogues in Human Geography, 14(1). https://doi​.org​/10​.1177​/20438206221144815. Johnson, B., & Clarke, J. M. (2003). Collecting sensitive data: The impact on researchers. Qualitative Health Research, 13(3), 421–34. Johnson, M. E., Kondo K. K., Brems, C., Ironside, E. F., & Eldridge, G. D. (2016) Mental Health Research in Correctional Settings: Perceptions of Risk and Vulnerabilities. Ethics & Behavior, 26(3), 238–251. https://doi​.org​/10​.1080​/10508422​.2015​.1011327. Jones, K., & Murphy, S. (2021). Researching perinatal death: Managing the myriad of emotions in the field. International Journal of Social Research Methodology, 24(5), 603–615. Jones, R., Santos, S., & Gilbourne, D. (2012). Visual methods in coaching research: Capturing everyday lives. In K. Armour & D. Macdonald (eds), Research methods in physical education and youth sport (pp.263–275). London: Routledge. Joseph, J., Liamputtong, P., & Brodribb, W. (2020). From liminality to vitality: Infant feeding beliefs among refugee mothers from Vietnam and Myanmar. Qualitative Health Research, 30(8), 1171– 1182. https://doi​.org​/10​.1177​/1049732318825147. Kara, H. (2015). Creative research methods in the social sciences: A practical guide. Bristol: Bristol University Press. Karcher, K., McCuaig, J., & King-Hill, S. (2024). (Self-)reflection/reflexivity in sensitive, qualitative research: A scoping review. International Journal of Qualitative Methods, 23, 1–15. https://doi​.org​ /10​.1177​/16094069241261860. Khanolainen, D. & Semenova, E. (2023). Self and others in school bullying and cyberbullying: Finetuning a new arts-based method to study sensitive topics. Qualitative Psychology, 10(1), 30–43. https://doi​.org​/10​.1037​/qup0000236. Kincaid, T. W. (2019). Methodological considerations for researching hidden-populations with an emphasis on homeless research sampling methods. Dissertations, 632. University of Northern Colorado, accessed 19 September 2024 at https://digscholarship​.unco​.edu​/dissertations​/632. Kirby, R., & Corzine, J. (1981). The contagion of Stigma: Fieldwork among deviants. Qualitative Sociology, 4(1), 3–20. Kumar, S. & Cavallaro, L. (2017). Researcher self-care in emotionally demanding research: A proposed conceptual framework. Qualitative Health Research, 28, 648–658. Lather, P. (2001). Postbook: Working the ruins of feminist ethnography. Signs. Journal of Women in Culture and Society, 27(1), 199–227. Lazard, L. & McAvoy, J. (2020). Doing reflexivity in psychological research: What’s the point? What’s the practice? Qualitative Research in Psychology, 17(2), 159–177. https://doi​.org​/10​.1080​/14780887​ .2017​.1400144. Leavy, P. (2019). Handbook of arts-based research. The Gilford Press: New York. Lee, R. M. & Renzetti, C. M. (1993) The problems of researching sensitive topics. In C. M. Renzetti & R. M. Lee (eds), Researching sensitive topics. Thousand Oaks: Sage Publications Inc. Les Back, L. & Puwar, N. (2012). A manifesto for live methods: provocations and capacities. The Sociological Review, 60(S1), 6–17. https://doi​.org​/10​.1111​/j​.1467​-954X​.2012​.02114.

Doing sensitive research in the social sciences: setting the scene  19 Letherby, G. (2000). Dangerous liaisons: Auto/biography in research and research writing In G LeeTreweek and S. Linkogle (eds.), Danger in the Field. Routledge. Lewis-Dagnell, S., Parsons, S., & Kovshoff, H. (2023). Creative methods developed to facilitate the voices of children and young people with complex needs about their education: A systematic review and conceptual analysis of voice. Educational Research Review, 39, 100529. https://doi​.org​/10​.1016​ /j​.edurev​.2023​.100529. Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. London: Sage. Liamputtong, P. (2010). Performing qualitative cross-cultural research. Cambridge: Cambridge University Press. Liamputtong, P. (2019). Innovative research methods in health social sciences: An introduction. In P. Liamputtong (ed.), Handbook of research methods in health social sciences. Singapore: Springer Nature. https://doi​.org​/10​.1007​/978​-981​-10​-5251​- 4​_1. Liamputtong, P. (2020). Qualitative research methods (5th edn). South Melbourne: Oxford University Press. Liamputtong, P. (ed.) (2023). Handbook of qualitative cross-cultural research methods: A social science perspective. Edward Elgar: Cheltenham. Liamputtong, P. & Fernandez, S. (2015). The drawing method and Burmese refugee children’s perceptions of health and illness. Australasian Journal of Early Childhood, 40(1), 23–32. Liamputtong, P. & Rumbold, J. (eds) (2008). Knowing differently: Arts-based and collaborative research methods. Nova Science Publishers: New York. Liamputtong, P., Rice, Z. S., Dune, T., & Arora, A. (2022). Ethics in health research. In Liamputtong, P. (ed.), Research methods and evidence-based practice (4th edn) (pp.56–71). Melbourne: Oxford University Press. Liamputtong, P. & Rice, Z. S. (2024). The paradox of health: Social determinants and migrant and refugee communities. In R. Chenhall, K. Senior & N. Jovanovski (eds), Social justice in public health. Routledge. Lor, M. & Bowers, B. J. (2018). Hmong older adults’ perceptions of insider and outsider researchers: Does it matter for research participation? Nursing Research, 67(3), 222–230. Lu, Y., Trout, S. K., Lu, K., & Creswell, J. W. (2005). The needs of aids-infected individuals in rural China. Qualitative Health Research, 15(9), 1149–1163. MacIver, E., Adams, N. A., Torrance, N., Douglas, F., Kennedy, C., Skatun, D., Hernandez Santiago, V., & Grant, A. (2024). Unforeseen emotional labour: A collaborative autoethnography exploring researcher experiences of studying Long COVID in health workers during the COVID-19 pandemic. SSM – Qualitative Research in Health, 5, 100390 Madriz, E. L. (1998). Using focus groups with lower socioeconomic status Latina women. Qualitative Inquiry, 4(1), 114–129. Mallon, S. & Elliott, I. (2019). The emotional risks of turning stories into data: An exploration of the experiences of qualitative researchers working on sensitive topics. Societies, 9(3), 62. https://doi​.org​ /10​.3390​/soc9030062. Mallon, S. & Elliott, I. (2021). What is ‘sensitive’ about sensitive research? The sensitive researchers’ perspective. International Journal of Social Research Methodology, 24(5), 523–535. https://doi​.org​ /10​.1080​/13645579​.2020​.1857966. Mann-Feder, V. R. & Goyette, M. (2019). Leaving care and the transition to adulthood: International contributions to theory, research, and practice. Oxford: Oxford University Press. Mannay, D. (2018). “You just get on with it”: Negotiating the telling and silencing of trauma and its emotional impacts in interviews with marginalised mothers. In T. Loughran & D. Mannay (eds.), Emotion and the researcher: Sites, subjectivities, and relationships (pp.81–95). Bingley: Emerald Publishing Limited. Markowska-Manista, U. & Górak-Sosnowska, K. (2022). Tackling sensitive and controversial topics in social research-sensitivity of the field. Society Register, 6(2), 7–16. Marsh, C. A., Browne, J., Taylor, J., & Davis, D. (2017). A researcher’s journey: Exploring a sensitive topic with vulnerable women. Women & Birth, 30(1), 63–69. https://doi​.org​/10​.1016​/j​.wombi​.2016​.07​ .003.

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Doing sensitive research in the social sciences: setting the scene  21 Paton, J., Horsfall, D., & Carrington, A. (2018). Sensitive inquiry in mental health: A tripartite approach. International Journal of Qualitative Methods, 17, 1–11. https://doi​.org​/10​.1177​/1609406918761422. Pearlman, W. (2023). Emotional Sensibility: Exploring the Methodological and Ethical Implications of Research Participants’ Emotions. American Political Science Review, 117(4), 241–1254. https://doi​ .org​/10​.1017​/S0003055422001253. Pinto, A., Rodriguez, A., & Smith, J. (2022). Researching sensitive topics in healthcare. EvidenceBased Nursing, 25, 41–43. Pio, E. & Singh, S. (2016), Vulnerability and resilience: Critical reflexivity in gendered violence research. Third World Quarterly, 37(2), 227–244. https://doi​.org​/10​.1080​/01436597​.2015​.1089166. Pittaway, E., Bartolomei, L., & Hugman, R. (2010). ‘Stop stealing our stories’: The ethics of research with vulnerable groups. Journal of Human Rights Practice, 2(2), 229–251. Powell, M. A., Graham, A., McArthur, M, Moore, T., Chalmers, J. & Taplin, S. (2020) Children’s participation in research on sensitive topics: addressing concerns of decision-makers. Children’s Geographies, 18(3), 325–338. https://doi​.org​/10​.1080​/14733285​.2019​.1639623. Preece, D. & Lištiaková, I. L. (2022). “There isn’t really anything around here ...”: Autism, education and the experience of families living in rural coastal England. Education Sciences, 11, 397. https:// doi​.org​/10​.3390​/educsci11080397. Probst, B. (2015). The eye regards itself: Benefits and challenges of reflexivity in qualitative social work research. Social Work Research, 39(1), 37–48. Punch, S. (2002). Research with children: The same or different from research with adults. Childhood, 9(3), 321–334. Quest, T. & Marco, C. A. (2003). Ethics seminars: Vulnerable populations in emergency medicine research. Academic Emergency Medicine: Official Journal of the Society for Academic Emergency Medicine, 10(11), 1294–1298. https://doi​.org​/10​.1111​/j​.1553​-2712​.2003​.tb00616​.x. Radley, A., Hodgetts, D., & Cullen, A. (2005). Visualizing homelessness: a study in photography and estrangement. Journal of Community & Applied Social Psychology, 15, 273–295. Råheim, M., Magnussen, L. H., Sekse, R. J. T., Lunde, Å., Jacobsen, T., & Blystad, A. (2016). Researcherresearched relationship in qualitative research: Shifts in positions and researcher vulnerability. International Journal of Qualitative Studies on Health and Well-being, 11, 30996. Robards, F., Kang, M., Luscombe, G., Hawke, C., Sanci, L., Steinbeck, K., Zwi, K., Towns, S., & Usherwood, T. (2020). Intersectionality: Social marginalisation and self-reported health status in young people. International Journal of Environmental Research and Public Health, 17(21), 8104. Rodriguez, L. (2018). Methodological challenges of sensitive topic research with adolescents. Qualitative Research Journal, 18(1), 22–32. https://doi​.org​/10​.1108​/QRJ​-D​-17​- 00002. Rogers-Shaw, C.; Choi, J. & Carr-Chellman, D. J. (2021). Understanding and managing the emotional labor of qualitative research [59 paragraphs]. Forum: Qualitative Social Research, 22(3), 22. http:// dx​.doi​.org​/10​.17169​/fqs​-22​.3​.3652. Rowlands, J. (2021). Interviewee transcript review as a tool to improve data quality and participant confidence in sensitive research. International Journal of Qualitative Methods, 20, 1–11. https://doi​ .org​/10​.1177​/16094069211066170. Rudzki, E. N., Kuebbing, S. E., Clark, D. R., Gharaibeh, B., Janecka, M. J., Kramp, R., Kohl, K. D., Mastalski, T., Ohmer, M. E. B., Turcotte, M. M., & Richards-Zawacki, C. L. (2022). A guide for developing a field research safety manual that explicitly considers risks for marginalized identities in the sciences. Methods in Ecology and Evolution, 13(11), 2318–2330. https://doi​.org​/10​.1111​/2041​ -210X​.13970. Saeed, M. & Griffin, G. (2019). Researching a sensitive topic in an unstable environment: Fieldwork dilemmas in the Khyber-Pakhtunkhwa province of Pakistan. Qualitative Research Journal, 19(3), 248–258. Sarkadi, A., Thell, M., Fängström, K., Dahlberg, A., Fäldt, A., Pérez-Aronsson, A., Warner, G., & Eriksson, M. (2023). Are we ready to really hear the voices of those concerned? lessons learned from listening to and involving children in child and family psychology research. Clinical Child and Family Psychology Review, 26, 994–1007. https://doi​.org​/10​.1007​/s10567​- 023​- 00453​- 4. Sampson, H., Bloor, M. and Fincham, B. (2008). A price worth paying? Considering the cost of reflexive research methods and feminist ways of doing. Sociology, 42(5), 919–933.

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2. The locus of sensitive research Gabriele Griffin

INTRODUCTION This chapter explores the construction of ‘sensitive research’ in the social sciences from the perspective of where and how sensitivity is located and what the implications of this are for the researcher. Starting with a brief literature review and a discussion of research that appeared to have no sensitive dimension but manifested unexpected sensitivities related to— for the researcher, intractable—cross-cultural complexities, the chapter moves on to explore three social science research scenarios in which the idea of sensitive research or sensitivity in research raises important questions regarding the researcher’s expectations, conduct and research realities. The first case concerns research in contexts where a topic is considered sensitive for cultural reasons, and the conduct of the research has to be mediated to accommodate this. This case highlights the contextual specificity of what might be considered sensitive in research. The second case relates to the situation of going into the field with the full expectation that a particular research topic is sensitive and that one is also dealing with so-called hard-to-reach populations, only to find that potential research participants come forward easily and are quite ready to talk about their experiences, partly because they find this cathartic and partly because they want to help others in a similar situation to themselves. This case deals with the gap between researcher expectations and research reality when conducting what might be deemed sensitive research. The third case focuses on the role of gatekeepers when researching a sensitive topic. It discusses contexts in which the use of gatekeepers is unavoidable and examines the ways in which gatekeeping impacts research on sensitive topics. Each of the three scenarios is illustrated with examples from actual research.

‘SENSITIVE RESEARCH’ IN THE SOCIAL SCIENCES—WHAT IS IT? There is significant literature on the topic of sensitive research: on 4 October 2023, a Google Scholar search yielded 3,730,000 hits for this topic alone. Sensitive research occurs in many different disciplines but is particularly extensively addressed in the contexts of medicine and healthcare, and in the social sciences. The literature on sensitive research in the social sciences locates it predominantly on three levels: a) the topic under consideration; b) vulnerable participant groups (children, minorities, oppressed or marginalised groups of various kinds, people with particular health issues); and c) researchers made vulnerable during and through their research. In their discussion about covert research on the internet in the context of cosmetic surgery, which Langer and Beckman (2005) consider a sensitive topic, they use the definition of sensitive topic articulated by Lee and Renzetti (1993): ‘A sensitive topic is one “that potentially poses for those involved a substantial threat, the emergence of which renders problematic for the researcher and/or the researched the collection, holding, and/or 25

26  Handbook of sensitive research in the social sciences dissemination of research data”’ (Lee & Renzetti, 1993, p.5; Langer & Beckman, 2005, p.190). This links the notion of the ‘sensitive topic’ to ‘those involved’ in the research, a fact that also emerges in Sikes and Hall’s (2020) account ‘Too close for comfort? Ethical considerations around safeguarding the emotional and mental wellbeing of researchers using auto/biographical approaches to investigate “sensitive” topics,’ where the discussion of autobiographical research is linked predominantly to the researcher’s grief, distress, and sensitive areas, without any particular definition of what a sensitive topic is. The assumption presumably is that since topics such as early-onset dementia in a parent and miscarriages (both used as examples by Sikes and Hall) are distressing, no further definition is required. Their interest is in the ‘emotional and psychological discomfort and more significant harm that can be experienced by educational researchers employing auto/biographical approaches to investigate sensitive issues’ (Sikes & Hall, 2020, p.164). But as Lee and Renzetti already noted, a sensitive topic is one that ‘potentially poses’ (emphasis added) a threat. In other words, there is a significant subjective or, one might say, contextual dimension to what constitutes a sensitive topic (see also Chapter 1 in this volume). The question of vulnerable groups poses different challenges, not only those of subjective estimation or distressing experience. Here, for example, legal definitions of vulnerable groups play a role, such as those related to age (people who are legally minors or underage, that is, legally they must be treated like children), those related to ability and capacity to comprehend the specifics of the research to be undertaken and its potential impact (people who are mentally incapacitated and not deemed able within the law to make decisions for and about themselves such as people with significant cognitive impairment, people with dementia, and so on), or those related to traumatic experiences. Vulnerable groups require special consideration due to possibilities of exploitation (see Pittaway et al., 2010) or re-traumatisation (Voith et al., 2020), for example. Powell et al. (2018, p.647), for instance, discussing children as a vulnerable group, state: ‘There is considerable caution around [children’s] participation in social research on “sensitive” issues’. Such caution is further amplified by a lack of agreement about what constitutes a ‘sensitive topic’. Their research is intended to elucidate what topics might be sensitive in research with children. They quote Richards et al. (2015, p.26) who argue that ‘the phrase “sensitive topic” is significantly overused and underevaluated, and rolled out to cover particular areas of research as if it were self-explanatory’. Powell et al. (2018, p.657) conclude that rather than the topic, ‘context and relationships’ matter when it comes to what is sensitive in research with children. I shall argue something similar in relation to the research scenarios I explore below. Nonetheless, the designation ‘vulnerable group’ suggests that the locus of sensitivity in research rests with the group deemed to be vulnerable. However, such a designation can also lead to ‘stigmatizing, essentialising, and stereotyping’ (Peroni & Timmer, 2013, p.1057; see also Aldridge, 2014), not least through denying such groups either implicitly or explicitly agency by casting them in the role of victims (see also Chapter 1). Much research has been conducted on researcher vulnerability in the context of research that is sensitive (Dickinson-Swift et al., 2008, 2009; Råheim et al., 2016; Sikes & Hall, 2020). This relates to different facets of potential researcher vulnerability, ranging from notions of distress and secondary trauma when researchers deal with sensitive topics such as interpersonal violence (Williamson et al., 2020) to anxieties about working with ‘hidden’ populations (Lazarus, 2013) and what Rager (2005) terms ‘compassion stress.’ Importantly, much of this work focuses on the difficult emotions a researcher may experience when being exposed to research situations that evoke emotional responses in the researcher (for example, Fohring,

The locus of sensitive research  27 2020). There is also some research on researcher vulnerability related to the physical safety of researchers working in dangerous contexts, such as in war and conflict zones (Saeed & Griffin, 2019) or researching political extremism, terrorism, or criminal activity under cover (Conway, 2021; Lavanchy, 2012; Love et al., 2019; Scheper-Hughes, 2004). In this work, the phrase ‘sensitive research’ encompasses both sensitive topics and researcher vulnerability (see Chapter 1). Underlying the conceptualisation of sensitive research is often a notion that particular topics and particular kinds of research are inherently ‘sensitive’ and difficult to deal with for those concerned. However, as I shall suggest below through the case studies I use, sensitivity in research is not as predictable as one might imagine, and this has important implications for how one approaches research that is deemed to be sensitive in some way. In the following sub-sections, I present three case studies involving sensitivities in research to discuss how the locus of those sensitivities can be both diverse and unexpected and is strongly shaped by researcher assumptions.

CROSS-CULTURAL COMPLEXITIES AND SENSITIVITIES IN RESEARCH One of the common experiences of researchers is that of the gap between one’s assumptions about how the research process will go and one’s experiences in the field, particularly in crosscultural research (see also Liamputtong, 2010, 2023). This was the case for Christina Svens (2016). Researcher assumptions played an important role in her account of ‘Being outsider: the vicissitudes of cross-cultural interviewing in a politically and culturally sensitive context’. In this article, she discusses research on theatre, which she undertook in Kurdistan, northern Iraq. Her topic, theatre, was not obviously sensitive, but the fact that she was a western woman going into a highly patriarchal context where western forces had had occupying roles rendered her research sensitive, first and foremost for reasons of gender identity, but also potentially, because she represented western-ness. In Sweden, Svens’ home country, she had cohabited for a long time with her male Kurdish partner, who accompanied her and acted as translator, something he had done professionally for quite a long time. As she described it: I assumed that he would facilitate any potential communication difficulties or cultural differences ... Because the majority of interviewees were men, I also thought that co-operating with a male interpreter might feel more appropriate to them. My strategy here was intended to mitigate the risks of different sets of norms, for instance around gender roles and power, leading to misunderstandings and meta-communicative barriers. (Svens, 2016, p.96)

Svens had clearly thought through what to expect in her proposed interview scenarios and tried to mitigate potential pitfalls. However, she soon found that her mitigating moves went unheeded, and, from her perspective, for sometimes unexpected reasons. Thus, she was almost entirely sidelined because women in the region where she was conducting her research were simply not part of the public sphere, and since this was the case, there was literally no place for her. As she put it: ‘I was excluded as the single woman in a public space, where men expected to meet and talk to other men’ (p.97; emphasis as in original). The homosociality (Kosofsky Sedgwick, 1985) that ruled this public context meant that Svens was relegated to the role of outsider/bystander. Svens interprets one situation where an interviewee did not act

28  Handbook of sensitive research in the social sciences as expected, bombarding the interpreter with questions rather than answering any, in cultural terms as having less to do with the prevailing gender hierarchy and more associated with notions of respect: His statement about the social situation of women as a pressing issue did not fit with his initial treatment of me as if I was not present, and his rejection of my project. My first gender-related interpretation or fear of postcolonial associations was perhaps not the main focus. The initial blocking of the interview became understandable when related to his experience of not being treated with proper respect by us. The male bonding did not work with the interpreter, who answered in a genderinappropriate way in this context by giving me attention. (Svens, 2016, p.100)

Svens’ use of the word ‘perhaps’ indicates doubt, and everything in the excerpt points to gender as the key sensitive dimension of the situation, gender as imbricated in power structures and hierarchies, including between men who bond by excluding women, and failure to do so involves reprisals such as non-cooperation. Svens was researching in a highly gendered context and sought to safeguard her research and herself as a researcher by taking her male life partner with her, a person ethnically aligned with those she was researching. However, the fact that he was living in exile also meant that he, too, was regarded as an outsider at least some of the time, and his behaviour towards her, which was considered gender-inappropriate by the research participants, added to the difficulties of conducting this research. Svens was confronted with cultural complexities that were tricky to navigate and that generated sensitivities in the research, which could not always be ameliorated. Here, as far as Svens was concerned, the locus of sensitivity was clearly the cultural specificity of the situation, saturated with gender hierarchies and attendant behaviours which were difficult to deal with. For her companion, the situation was partly different; not only did he act in gender-inappropriate ways as far as the informants were concerned, but he was, equally importantly and unexpectedly, perceived ‘as a representative figure of Kurds in exile who supported the new political movement. This had associations with creating chaos in society. Effectively, we represented two types of outsiders/strangers’ (Svens, 2016, p.108). Svens’ considered assumptions and forethoughts regarding her fieldwork did not fully capture what occurred on the ground. Rather, the cultural specificities she encountered created a sensitive research situation which proved frustrating and difficult for her to manage.

RESEARCHING WIFE ABUSE IN JORDAN FROM THE INSIDE: THE SENSITIVITIES OF CULTURAL SPECIFICITY In contrast to Christina Svens’ research situation discussed above, Reem Atiyat’s (2015) research on wife abuse in Jordan, her home country, was not marked by her being an outsider but rather by her topic, wife abuse, which is considered sensitive in many countries and contexts—not just in Jordan—and by the fact that, in order to reach her participants, she was compelled to resort to gatekeepers in the form of official organisations supporting women seeking redress against abuse. The need for using gatekeepers arose because of both custom and practice in Jordan and the legal ramifications of people disclosing family issues to people who are not part of the family. Jordan, like Iraq, is a highly patriarchal culture where women face significant obstacles to independence, such as legally enforced guardianship by male relatives (fathers, brothers, husbands, and so on) and ‘sensitivity towards the disclosure of

The locus of sensitive research  29 private family issues such as wife abuse’ (Atiyat, 2015, p.96) because the Personal Status Act No. 36 of 2010 severely restricts what women can do. Discussing family matters outside of the family is effectively prohibited, which makes seeking help in case of abuse difficult and makes it unlikely that women will come forward to be interviewed about experiencing abuse. Hence, Atiyat decided to work with gatekeepers to access her interviewees. This kind of move is not uncommon in research involving sensitive topics, especially in hierarchical cultures. When a Taiwanese PhD student of mine, who was a social worker in her native country, wanted to research child abusers, she proposed to go straight to the police to access such abusers and to do so in the summer because, according to her, child abuse rates went up during the summer. She was surprised to discover that accessing abusers through police authorities was considered problematic because this context was bound to impact on how her potential research participants might react. I also considered her somewhat at risk of difficult experiences, given that she was a young woman at the time, not far removed from the victims of the men she proposed to interview. In the end, she modified her research and did not interview child abusers. Similarly to the case of this Taiwanese woman who wanted to use authority structures (institutions, personnel) to access her research participants, Atiyat also wanted to make use of such structures. Her rationale was: I thought that having personal connections was crucial at this point in my research in order to gain access to the victims. Caroline Ronsin (2010) explains the issue of connections, also known as ‘wasta’ in Jordan as: ‘The use of informal channels (mostly based on kinship ties) to obtain any kind of service, such as avoiding a fine, speeding-up an administrative process, getting a job or better grade at university.’ (Atiyat, 2015, p.120)

Atiyat had been brought up in a social context where the use of wasta was a norm and considered unproblematic. Consequently, initially, she had no sense that this might impact on her research. Following discussions, she realised that ‘contacting the victims through the assistance of a governmental authority might cause the victims to feel intimidated due to the resulting formal stance as I would be associated with the official gatekeeper’ (Atiyat, 2015, p.120). However, there was also no obvious way in which she could approach women suffering wife abuse directly, given the Personal Status Act and women’s resultant reticence to speak about abuse. As she put it: [Not utilizing wasta] meant I had to start over. I had to look for people whom I did not know to provide me with access to places I had never been to in order to talk to people whom I had never met, and who would think of me as an intruder. I dismissed the use of ‘wasta’ and visited Jordanian nongovernmental organizations and governmental institutions that provide protection services against wife abuse in order to pave the way for my research. (Atiyat, 2015, p.121)

She had great difficulty finding research participants and used a variety of avenues to access them, mostly institutions and organisations such as the Jordanian Women’s Union, an NGO, and the Jordanian Ministry of Social Development. Atiyat gives a detailed account of what happened, which I shall not reiterate here. However, I want to point out that what made her research sensitive was both her topic and, importantly, the sociocultural context in which she conducted her research. That context kept her potential research participants largely invisible through the limitations imposed on their lives and their ability to function as independent

30  Handbook of sensitive research in the social sciences agents. There was thus not one single factor that generated the sensitivity of Atiyat’s research but rather the intersectional confluence of multiple dimensions. This, in turn, necessitated the assistance of gatekeepers, which of course also impacted her research.

RESEARCHER ASSUMPTIONS, THE VULNERABILITY OF RESEARCH PARTICIPANTS AND RESEARCHER VULNERABILITY As previously mentioned, researcher assumptions play a significant role in sensitive research. All researchers who want to research anyone who is considered either a vulnerable subject or part of a hard-to-reach population—and the two not infrequently go together—have to grapple with questions of sensitivity as a function of whom they intend to research. In the case I discuss here, the work of another former PhD student of mine, Nicole Ovesen (2021), the notion of the hard-to-reach, and at least potentially vulnerable, population and the sensitive topic came together in her research on “Intimate Partner Violence and Help-Seeking in Lesbian and Queer Relationships: Challenging Recognition.” Ovesen wanted to explore helpseeking among lesbians and queer women who were experiencing intimate partner violence. She had already done work on this for her Master’s thesis and had found it quite difficult to recruit participants. Thus, when she embarked on her PhD, she expected the same thing to happen. This, however, was not the case. Because hard-to-reach populations ‘can sometimes be more easily recruited via social media and online platforms than via other means’ (Ovesen, 2021, p.52), Ovesen created a blog, and ‘I unexpectedly received many responses from potential research participants within the first few days after having created the blog’ (Ovesen, 2021, p.52). The ‘unexpectedly’ is the clue here: contrary to her assumptions, Ovesen found that recruiting participants for her research on a sensitive topic was not difficult. As Ovesen (2021, p.53) describes it: When I started to recruit for the PhD project, I expected it to be difficult to reach potential research participants since for my Masters research I had struggled to get interviewees. However, I experienced quite the opposite: within the first week 28 people had contacted me.

Ovesen provides several possible explanations for this, including the proximity in time of her research to the #MeToo movement (pp. 53–54). However, ‘violence against LGBTQ people was often left out or at best footnoted in the #MeToo movement’ (p. 54), and Ovesen’s research concerned a specific form of violence, intimate partner violence, within particular sub-sections of that community: lesbian and queer women. She quotes one of her research participants as pointing out that there are people who think that intimate partner violence ‘would never happen in a lesbian relationship’ and that there are ‘those who say, like, “I would always choose to be with a woman over a man to avoid being subjected [to violence]”’ (Ovesen, 2021, p.54). This research participant, therefore, said that I think it needs to get out more and that’s why I am so happy every time I hear about someone who dared to speak up. Because that doesn’t mean … Well, I know that we are an exposed group in general and that’s why it is so difficult. It has to be done the right way. But at the same time I think it’s not weird to think that violence occurs in all types of relationships … But maybe it sort of goes against that idea that violence is always about women being subordinated to men in some way and

The locus of sensitive research  31 then it is difficult to talk about that violence occurs in same-sex relationships. It sort of clashes in some way ideologically. (Ovesen, 2021, p.54)

Here, this research participant clearly articulates the relationship between being in what they call ‘an exposed group’ and thinking that what happens or can also happen in that group needs to be understood better, not least, as Ovesen’s thesis argues, to provide more adequate services for that group. Here, the locus of sensitivity in the research resided both with the research participants as such who had experienced intimate partner violence and with the topic. However, contrary to the researcher’s expectation, it was not difficult either to recruit participants or to discuss the topic. Ovesen’s participants wanted to discuss their experiences for a variety of reasons and came forward readily. That fact itself is, of course, worrying on one level, as it points to a certain level of prevalence of intimate partner violence among same-sex couples. But Ovesen also and specifically used a technique for approaching her topic adopted from the work of Britta Lundgren (2016), who investigated grieving following a sudden death. Ovesen explained: Talking to a stranger about personal experiences might be experienced as challenging and uncomfortable. In her study on grief, Britta Lundgren emphasizes the significance of asking indirect questions to facilitate rapport: “I wanted to question the different imperatives about emotionality. In trying to get hold of this, I did not ask so much about what they felt, rather about what they did” (Lundgren, 2016, p.204, cited in Ovesen, 2021, p.61)

Ovesen, like Lundgren, decided to ask what her participants did rather than how they felt, and one interviewee told her: ‘It was nice that there wasn’t so much emotional talk about how I felt and experienced it, but more concretely this and this’ (Ovesen, 2021, p.61). Focusing on doing rather than feeling helped this interviewee to recount her experiences. It made talking about these experiences more manageable for this research participant. Ovesen also, and importantly, discusses the issue of assumptions about vulnerability and researching a sensitive topic. She cites Julia Downes, Liz Kelly and Nicole Westmarland, who describe vulnerability as ‘a slippery and ambiguous term’ (2014, para.2.8), and who argue that ‘framing research participants as vulnerable is often based on assumptions that victims cannot comprehend potential risks or the consequences it might have on them to take part in a research project’ on intimate partner violence (Ovesen, 2021, p.68). She quotes Downes et al. (2014, para.3.3) as stating: ‘[i]n contrast to the stereotype of a victim of domestic violence as passive, women who live in (or have lived through) violent and abusive situations are often highly skilled in managing risk and harm to themselves and their children’ (Ovesen, 2021, p.68). Here, two different types of vulnerability are conflated: the vulnerability of the research participant in the research process and the vulnerability of the research participant as a person outside of that research process. These two vulnerabilities and their influence in making research sensitive are of somewhat different orders. However, both point to the potential of victimisation, in the former instance through exploitation and potential re-traumatisation, in the latter case through being/becoming the victim of intimate partner violence. But as longstanding feminist debates about the terminologies used to refer to those who have experienced interpersonal (and other) violence and trauma indicate—debates about whether to talk about victims or survivors, for example (see, for example, Anderson and Gold, 1994; Devine et al., 2003; Ross, 2022)—the position of people who have experienced interpersonal violence varies considerably both from individual to individual and across time. Hence, assumptions

32  Handbook of sensitive research in the social sciences about their sense of their vulnerability need to be carefully calibrated, both in relation to their experience of violence and in relation to their potential vulnerability as research participants. Being mindful of these issues is demanding for the researcher: Ovesen (2021) herself found doing her research emotionally demanding; the disclosures to which she was exposed were difficult to deal with. They occurred not only during the interviews but lasted into the data analysis process, when transcribing interviews and analysing them required sustained and detailed engagement with distressing material. As a supervisor in this situation, I have to say that support for researchers dealing with sensitive topics is inadequate; most academics are not trained in dealing with researcher vulnerability regarding the content of their research, possibly because the notion that the most appropriate stance towards one’s research is ‘objective’ and somewhat removed—impersonal, in other words—still largely prevails despite decades of feminist and standpoint theories that emphasise the contrary. However, it is also well established that many feminist researchers work on topics close to their hearts, and these are often sensitive, such as eating disorders, abortion, rape, sexual violence, body image issues, various forms of physical and mental illness, stalking, and so on. In those scenarios, there is a clear need for added support for the researcher, and it would be useful to establish proper protocols and guidelines on this, which, at PhD level at least, are still largely lacking.

DIFFICULT GATEKEEPERS, CROSS-CULTURAL AND SENSITIVE RESEARCH: LESSONS FROM FIELDWORK The last case I want to discuss concerns research across different ethnic groups, the need for, and sometimes problems of, working with gatekeepers, and the issue of sensitive research. In 2010–2011, another of my PhD students, Beatrice Akua-Sakyiwah, who hailed from Ghana, conducted research with Somali women in London about their access to services such as social and health services in the UK. This is important because, according to UK Office of National Statistics (ONS) figures based on the census of 2021, a high percentage of eligible Somali women are economically inactive (that is, not participating in the labour market) and if participating, working in low-paid jobs. Somalis are also highly likely to live in social rented accommodation; according to the ONS, ‘72.0% lived in social rented housing; this is over four times higher than the percentage of the England and Wales population (16.6%)’.1 Whilst Somalis largely represent a younger age group in the UK population who enjoy good health, as they become older, their health is significantly worse than that of the population as a whole: ‘for those aged 60 to 85 years and over who identified as Somali, there was a higher report of “Bad or very bad health” (22.4%), compared with the same age bracket for the population of England and Wales (12.0%)’.2 All of this also held true in 2010–2011 when Akua-Sakyiwah conducted her research, as a report from one of the local councils in London shows.3 It means that Somalis are very likely to rely on services and benefits provided by the state. At the same time, ‘Females who identified as Somali and who reported they spoke a main language other than English (English or Welsh in Wales) were less likely to say they could speak English “Very well” or “Well” (68.1%), compared with males (83.2%)’;4 hence Somali women are likely to need interpreters when accessing services. It also means that when Akua-Sakyiwah went into the field, she needed an interpreter, and, indeed, as she found, she also needed someone to enable her to access women from within the Somali community. Having had prior engagement with Somali women in her role as a teacher,

The locus of sensitive research  33 Akua-Sakyiwah had assumed that she would find it easy to get participants from within the group of Somali women whom she already knew, not least because, as a black woman, she shared their racial background (Akua-Sakyiwah, 2016, p.44). However, this assumption proved to be wrong. Contrary to expectations, the women whom she wanted to work with as informants were very reluctant to do so and ultimately refused to engage with her. As she puts it: ‘I had not considered their cultural backgrounds and that these might create a problem’ (p.46). For one thing, she needed to work with a key informant who could interpret for her and who effectively acted as a gatekeeper, not least because Akua-Sakyiwah had to rely on this informant’s availability, which was not easy. But more than that, ‘the women who had initially agreed to home interviews did not want me to come to their homes when I tried to arrange this’. They also wanted Akua-Sakyiwah to be always accompanied by her key informant during interviews; they wanted to be interviewed in a public place, a local park; and they wanted to be interviewed as a group when Akua-Sakyiwah had planned individual interviews. AkuaSakyiwah understood that asking the Somali women about their access to services might constitute sensitive research, that is, be a topic that they would not want to discuss readily, not least because their migrant status might not be fully established or clear, meaning that they might not (yet) have a legal status as migrants in the country. As Akua-Sakyiwah writes: ‘For the Somali women, there appeared to be “safety in numbers,” although in relation to what was not clear. The notion of an individualised interview proved problematic in this context, and it remained so throughout my research’ (p.47). For these women, individualised interviews were ‘an unfamiliar research format’ (p.47). It was also the case that some of them apparently had experience of participating in research before, but on that occasion, they had been paid, and the fact that they were not remunerated on this occasion may have also reduced their willingness to participate. Ultimately, Akua-Sakyiwah had to resort to a variety of approaches to try and gain participants, and all of these had certain pitfalls. A major one related to her need to use interpreters to access her informants and, as is often the case (see also Smith, 2016), when working with interpreters, she found herself sidelined and not engaged with. She worried about what the interpreters asked and then communicated to her from the answers given by the women. She was also very aware that, as women, her participants were unused to being asked their opinions. As she put it: ‘In a typical traditional African marital home women are expected to be silent ... For uneducated women [which her informants largely were], who might not know how to stand up for their rights, their experience is doubly jeopardized. Sometimes these women only get to talk about their issues when they meet with their female friends’ (AkuaSakyiwah, 2016, p.52). And she was not one of their friends. Multiple sensitivities came together in Akua-Sakyiwah’s research: that of her topic, that of the participants from different ethnic backgrounds than her own, and that resulting from working with intermediaries to access her informants, such as interpreters and gatekeepers. It made for a complex and difficult research situation, which she had not anticipated and which she found personally difficult to deal with, as she felt rejected and undermined in her efforts.

CONCLUSION AND FUTURE DIRECTIONS Although much writing on sensitive research disentangles the various sources, or loci, of that sensitivity for analytical purposes, such that there is work devoted to sensitive topics,

34  Handbook of sensitive research in the social sciences to vulnerable populations, and to researcher vulnerability, in reality these three sources of sensitivity are frequently entangled and require an intersectional disposition to prepare and account for them appropriately when conducting research. However, it is also the case that sensitivities encountered in the field are not always anticipatable or fully foreseeable. Svens (2016), for instance, had quite carefully thought through what she might encounter in the field and had tried to mediate the sensitivities she expected to meet. Those sensitivities, however, proved to be much more intractable than she had imagined, rendering her field experience difficult and demanding. Ovesen’s account, on the other hand, provides something of an antidote to Svens’ experience. Ovesen, too, had anticipated difficulties in recruiting participants and getting them to talk about their experiences of intimate partner violence, but this proved not to be as tricky as she had thought it would be. In other words, researcher assumptions and expectations regarding difficulties one might encounter when conducting sensitive research do not always come true—either at all, or not in the ways one might expect. This calls for significant researcher flexibility when engaging in the field, and for adaptability in relation to the research situation. It means that researchers have to deal with their own responses to the unexpected in the context of sensitive research in a way that allows them to pursue their work whilst remaining alert to the possibility that their anticipations may not be met—for good or ill. Sensitive research is, of course, complicated when the researcher has to work with intermediaries, gatekeepers, and interpreters (see also Liamputtong, 2007, 2010, 2023). This adds yet another potentially sensitive dimension to research, for instance, when a researcher does not understand ethnic diversities and matches an informant with an interpreter who is from an inappropriate group in terms of the informant’s position (Kaufert & Koolage, 1984; Wallin & Ahlström, 2006). It also reinforces the notion that one needs to take an intersectional approach to sensitive research, which seeks to account for all the various dimensions of sensitivity that inform a given research project. Despite the fact that sensitive research is much discussed in terms of identifying what exactly makes research sensitive, we still need much more engagement with what one does in complex sensitive research situations. In particular, I would argue that there is a clear need for proper guidelines regarding how to support researchers undertaking such work. Academics are not trained to work as therapists for such researchers, and yet they are under an ethical and professional obligation to produce appropriate support for such research. Yet, in the institutions in which I have worked, there is no entity (such as a counsellor or therapist of some kind) specifically appointed to deal with such matters. This seems to me to be an institutional and ethical oversight that urgently needs lobbying for and remedying. Alternatively, all academics expecting to supervise or undertake sensitive research need to be trained in how to handle the difficulties that arise when conducting or supervising sensitive research. A final point on sensitive research: all the cases I have discussed here involved direct person-to-person interaction. However, increasingly researchers work remotely, using social media and tools such as Zoom to conduct sensitive research. Undertaking sensitive research online creates additional issues for researchers, not least regarding data protection. When one asks potential informants to respond by email to a call for participants, for example, one is already storing their identities (whether ‘real’ or ‘constructed’), often in a context where one has asserted in a prior ethics application that one will anonymise, pseudonymise or de-identify informant data, and that only a specific group of people (researcher, supervisor, PI, etc.) will have access to that information. Without discussing this issue further, I want to highlight here that conducting sensitive research online brings with it a whole host of additional issues

The locus of sensitive research  35 and although we are beginning to see studies of this issue (for example Roberts, 2015; Smith, Thew & Graham, 2018; Carter et al., 2021), much more work needs to be done on this, too.

NOTES 1. See Somali populations, England and Wales: Census (2021). Employment, accessed 20 September 2024 at https://www​.ons​.gov​.uk​/peo​plep​opul​atio​nand​community​/culturalidentity​/ethnicity​/articles​/som​alip​opul​atio​nsen​glan​dandwales​/census2021​#employment. 2. Ibid. 3. See Tower Hamlets​.gov​​.uk (n.d.). The Somali-born population in Tower Hamlets, accessed 20 September 2024 at https://www​.towerhamlets​.gov​.uk​/ Documents​/ Borough​_statistics​/ Census​_2011​/Somali​_key​_facts​_infographic​_summary​_1​.01​.172​.pdf. See also Tower Hamlets​.gov​​.uk (n.d.). Somali Task Force Report, accessed 20 September 2024 at https:// www​.towerhamlets​.gov​.uk ​/ Documents​/Community​-safety​-and​-emergencies​/ TH​_ Somali​ _Task​_Force​.pdf, for a later account. 4. See Somali populations, England and Wales: Census (2021). Employment, accessed 20 September 2024 at https://www​.ons​.gov​.uk​/peo​plep​opul​atio​nand​community​/culturalidentity​/ethnicity​/articles​/som​alip​opul​atio​nsen​glan​dandwales​/census2021​#employment.

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36  Handbook of sensitive research in the social sciences Langer, R. & Beckman, S. C. (2005). Sensitive research topics: Netnography revisited. Qualitative Market Research: An International Journal, 8(2), 189–203. Lavanchy, A. (2012). Going under cover? Ethics, transparency and witnessing in researching institutions. GRED, Ethical case discussions in the ethnological research, Swiss Ethnological Society, accessed 20 September 2024 at https://www​.seg​-sse​.ch​/pdf​/2012​-10​-30​_ Lavanchy​.pdf. Lazarus, L. (2013). Working with marginalized and ‘hidden’ populations: Researchers’ anxieties and strategies for doing less harmful research. Caribbean Review of Gender Studies, (7), 1–22. Lee, R.M. & Renzetti, C.M. (1993). The problems of researching sensitive topics. In C. M. Renzetti & R. M. Lee (eds), Researching sensitive topics (pp.3–13). Sage. Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. London: Sage. Liamputtong, P. (2010). Performing qualitative cross-cultural research. Cambridge: Cambridge University Press. Liamputtong, P. (2023). Conducting cross-cultural research qualitatively in social science: Setting the scene. In P. Liamputtong (ed.), Handbook of qualitative cross-cultural research methods: A social science perspective (pp.1–24). Cheltenham, UK and Northampton, MA, USA: Edward Elgar. Love, B., Vetere, A., & Davis, P. (2019). Handling ‘hot potatoes’: Ethical, legal, safeguarding, and political quandaries of researching drug-using offenders. International Journal of Qualitative Methods, 18. https://doi​.org​/10​.1177​/1609406919859713. Lundgren, B. (2016). ‘Don’t focus the star; try to catch the light’: indirect questioning in interviews to explore normative assumptions in one’s research focus. In G. Griffin (ed.), Cross-cultural interviewing: Feminist experiences and reflections (pp.192–207). Routledge. Ovesen, N. (2021). Intimate partner violence and help-seeking in lesbian and queer relationships: Challenging recognition. PhD thesis, Uppsala University Press. Peroni, L. & Timmer, A. (2013). Vulnerable groups: The promise of an emerging concept in European human rights convention law. International Journal of Constitutional Law, 11(4), 1056–1085. Pittaway, E., Bartolomei, L., & Hugman, R. (2010). ‘Stop stealing our stories’: The ethics of research with vulnerable groups. Journal of Human Rights Practice, 2(2), 229–251. Powell, M. A., McArthur, M., Chalmers, J., Graham, A., Moore, T., Spriggs, M., & Taplin, S. (2018). Sensitive topics in social research involving children. International Journal of Social Research Methodology, 21(6), 647–660. Rager, K. (2005). Compassion stress and the qualitative researcher. Qualitative Health Research, 15(3), 423–430. Råheim, M., Magnussen, L. H., Sekse, R. J. T., Lunde, Å., Jacobsen, T., & Blystad, A. (2016). Researcher– researched relationship in qualitative research: Shifts in positions and researcher vulnerability. International Journal of Qualitative Studies on Health and Well-Being, 11(1), 30996. Richards, S., Clark, J., & Boggis, A. (eds) (2015). Privileging voices. In Ethical research with children: Untold narratives and taboos (pp.121–145). London: Palgrave Macmillan. Roberts, L. D. (2015). Ethical issues in conducting qualitative research in online communities. Qualitative Research in Psychology, 12(3), 314–325. Ross, L. K. (2022). The survivor imperative: Sexual violence, victimhood, and neoliberalism. Signs: Journal of Women in Culture and Society, 48(1), 51–75. Saeed, M. & Griffin, G. (2019). Researching a sensitive topic in an unstable environment: Fieldwork dilemmas in the Khyber-Pakhtunkhwa province of Pakistan. Qualitative Research Journal, 19(3), 248–258. Scheper-Hughes, N. (2004). Parts unknown: Undercover ethnography of the organs-trafficking underworld. Ethnography, 5(1), 29–73. Sikes, P. & Hall, M. (2020). Too close for comfort?: Ethical considerations around safeguarding the emotional and mental wellbeing of researchers using auto/biographical approaches to investigate ‘sensitive’ topics. International Journal of Research & Method in Education, 43(2), 163–172. Smith, K. V., Thew, G. R., & Graham, B. (2018). Conducting ethical internet-based research with vulnerable populations: A qualitative study of bereaved participants’ experiences of online questionnaires. European Journal of Psychotraumatology, 9(sup1). https://doi​.org​/10​.1080​/20008198​ .2018​.1506231.

The locus of sensitive research  37 Smith, S. (2016). Living differences: Experiences from Botswana. In G. Griffin (ed.), Cross-cultural interviewing: Feminist experiences and reflections (pp.79–93). London: Routledge. Svens, C. (2016). Being outsider: The vicissitudes of cross-cultural interviewing in a politically and culturally sensitive context. In G. Griffin (ed.), Cross-cultural interviewing: Feminist experiences and reflections (pp. 94–110). London: Routledge. Voith, L. A., Hamler, T., Francis, M. W., Lee, H., & Korsch-Williams, A. (2020). Using a traumainformed, socially just research framework with marginalized populations: Practices and barriers to implementation. Social Work Research, 44(3), 169–181. Wallin, A. M. & Ahlström, G. (2006). Cross‐cultural interview studies using interpreters: systematic literature review. Journal of Advanced Nursing, 55(6), 723–735. Williamson, E., Gregory, A., Abrahams, H., Aghtaie, N., Walker, S. J., & Hester, M. (2020). Secondary trauma: Emotional safety in sensitive research. Journal of Academic Ethics, 18, 55–70.

3. The emotional labour of conducting sensitive research: the researchers’ perspective Esmée Hanna and Richard Hall

INTRODUCTION The conduct of research in contemporary universities and research-orientated organisations is, in general, framed in terms of the need to ensure such work is compliant with the principles of ethical conduct and integrity (Universities UK, 2023). Such ‘procedural ethics’ (McGowan, 2020) take the principles of ‘do no harm’ as central and largely focus, with good reason, on the safety and wellbeing of the participants studies seek to include. All disciplinary codes of ethics or institutional ethics guidelines impress upon researchers the importance of having a clear plan for safeguarding participants’ involvement, minimising risk to them, and ensuring that the handling and storage of any data from research is both legally and ethically compliant.1 This is, of course, vital, but it also tends to marginalise the question: ‘What about the researchers? Who is protecting them from the potential emotional challenges of conducting research?’ The British Psychological Society Code of Ethics and Conduct (often held aloft as a ‘gold standard’ code of ethical practice within the social sciences in the UK) mentions researchers in relation to conducting studies with participants who may have experienced or had adverse life experiences: Researchers will need to evidence to the REC [Research Ethics Committee] that they have considered and put in place appropriate measures to address their own psychological and physical safety and wellbeing (Oates, 2021, p.18).

The question of what ‘appropriate measures’ could entail is, however, not clearly defined, and the limits of psychological safety will, of course, be very different for different researchers depending on a number of factors. These include fieldwork experience, positionality in relation to the topic being investigated, and their own personal level of ‘resilience’. The way in which all these aspects intersect is at the heart of this chapter, as we seek to give a clearer understanding of the key aspects regarding the emotional labour of conducting research classified as sensitive. At issue is how we, collectively, better consider the ‘safety’ of researchers from a humanistic perspective rather than a procedural one.

A NOTE ON SENSITIVE RESEARCH AND POSITION However, it is perhaps worth considering first what we mean by ‘sensitive research’ and what the conduct of such research could entail in terms of emotional impacts and implications for researchers. The definitional challenges of what we may consider ‘sensitive’ within research are well accounted for elsewhere (Liamputtong, 2007; Dickson-Swift et al., 2008; see also 38

The emotional labour of conducting sensitive research  39 Chapter 1 in this volume). Broader definitions of ‘sensitive’ encompass something or someone being ‘easily damaged’ or ‘needing to be treated with care or secrecy’ (Cambridge Dictionary, 2023). Sensitive research can, therefore, be seen as that which requires careful handling as it could be something that could cause damage or risk to those involved. In fact, UK university policies tend to focus upon: first, research into illegal activities; second, research that requires access to prohibited websites and services; and third, research into extremism and radicalisation. Of course, the collection of special category data for processing also increases levels of sensitivity. From an ethics and governance perspective, such sensitive work often implies or assumes that those participating in the research may likely be vulnerable and, therefore, require additional measures to safeguard their wellbeing (Mallon & Elliott, 2022). Research being sensitive does not automatically mean all other ‘non-sensitive’ research does not contain an emotional component for participants or researchers, especially if we take Wetherell’s stance that all research is ‘affective practice’ (Wetherell, 2015). However, sensitive research, by virtue of its potential closeness to emotional experiences or traumatic imagery or information, is perhaps more heavily affective. Since the 1960s, there has been a shift towards the ‘personal as political’ (Hanna, 2014), and as contemporary societies are seen to become more ‘liquid’ and unfettered by the solid structures of modernity, there has been a greater focus on personal identity (Branaman, 2007). These wider, personal-political shifts are mirrored in the increasing focus in social science research on topics that are regarded as being more ‘sensitive’. An often symbiotic process can be seen in relation to this, whereby researchers seek to study and investigate social phenomena that are personal to them (Dickson-Swift et al., 2008; Fenge et al., 2019; see chapters in Part 3 in this volume). As previous taboos and stigma are challenged and broken down, this also potentially opens up greater possibilities for the exploration of topics that have not previously been subject to scrutiny, but which are likely sensitive. This also includes the need to engage with the ethical implications of positionality in research gone wrong (Wilkinson & Wilkinson, 2023). Examination of any social science journal will reveal a whole gamut of topics being investigated, from engagement in illegal activities, sexual preferences and practices, death and bereavement to violence and terrorism. Such research may also include speaking truth to power, such as the investigation of whistleblowing, systemic abuse, or the exposition of epistemic violence. Aspects of social life that were once kept hidden or private are increasingly seen as the legitimate focus of research, partly perhaps due to human curiosity to know more about abject, contested, or taboo aspects of social life (Hanna, 2019a) but also due to wider desires for research to contribute (in the altruistic social value sense) to changing and transforming social life for the better. Here, it is important to note that critical feminist methodologies have been at the forefront of such changes, in part due to the insights feminists were able to provide regarding the value of qualitative narratives as a means of empowering social actors (Mallon & Elliott, 2019). Likewise, critical race actors have developed methodologies that stress standpoints, counternarratives, and structural and intersectional movements for liberation (Hughes & Giles, 2010). The personal is, therefore, not only political; it is also now a major focus of research. This means that there has potentially never been more engagement with research that is sensitive, and as a result, researchers, in the course of their studies and work, are increasingly grappling with the emotional labour of such research.

40  Handbook of sensitive research in the social sciences

A NOTE ON THE EMOTIONAL LABOUR ENTAILED BY SENSITIVE RESEARCH Recent reflexive and methodological writings have begun to engage clearly with the emotionality and labour involved in sensitive research, and as a result, the real impact of such work on researchers themselves has begun to be carefully articulated. Much of the emergent work in this area prefaces that the emotional impact and potential harms of research on those who conduct it have largely been overlooked (Fenge et al., 2019). Much of the existing literature talks about negative emotions within research encounters, including emotional fatigue (Sherry, 2013), guilt (Waters et al., 2020; Witty et al., 2014), shame (Mallon & Elliott, 2019), anxiety and uncertainty (Butler-Rees & Robinson, 2020) as well as distress and sadness (Hanna, 2019b). This maps across to a range of research that looks at the lived experiences of those made marginal inside higher education institutions. These institutions have been described as anxiety machines (Hall & Bowles, 2016) and work inside them as self-exploiting labour of love (Tokumitsu, 2014). A range of autoethnographic works has also described them structurally and culturally in negative terms in relation to shaming, performativity, and intersectional injustices (Ahmed, 2017; Gill & Ryan-Flood, 2010). This, then, sets some of the background for the ways in which research practices are conducted, pivoting from within universities that are governed around discourses of impact and excellence. Understandably, such negative aspects require heavy emotional labour and can take a real and problematic toll on the wellbeing of researchers (see also Chapter 1). There are, however, reports of more positive emotions to be found (Hanna, 2019b; Waters et al., 2020). Feelings of gratitude towards participants who give up their time and share deeply personal and sometimes potentially re-traumatising accounts can be a positive emotional response within research (Waters et al., 2020). In fact, some suggest that the focus on negative emotional labour has led to overlooking the position and value that positive emotions have within research (Nelson, 2020). Yet, even when feelings and motivations could be described as positive, it must be acknowledged that they can still be the cause of intense emotional labour within research (Fenge et al., 2019). As Sherry (2013, p.286) notes, ‘when researching vulnerable communities, and developing the empathetic and often reciprocal relationships with participants, a result of this enhanced involvement can be emotional fatigue’. Sherry describes her own experiences with face-to-face research with an extremely vulnerable community that faced significant challenges. During her research, she negotiated self-harm, suicide, and death among her participants. It is not, however, just the ‘standard’ (interviewing) or classical methods (such as ethnography) of social science research, such as those built on relationality, that can elicit such emotional responses. The conduct of research online, for instance, with anonymised participants, can also render researchers vulnerable to the traumatic or emotionally intense experiences of their participants’ lives (Hanna, 2019b). Therefore, the interactional aspect of research is only one possible part of the emotional labour that sensitive studies involve; the topic and narratives researchers are expected to ‘absorb’ are a central element (Hanna, 2019b). As Seear and McLean (2008, p.12) observe,

The emotional labour of conducting sensitive research  41 In the performance of emotional labour, the researcher will frequently suppress her or his emotions in exchange for making the interviewee feel comfortable; eventually, however, the researcher will be left to process these feelings, often on their own.

The researcher is then potentially a ‘sponge’ for the experiences of others. This price of the transaction of gathering stories for the gain of research is often not considered fully in terms of what this means for the researchers themselves. There may then be a lack of preparedness among researchers for the emotions that research may induce or create (Fenge et al., 2019). Such unexpected challenges can be seen as part of the ‘ouch factor’ in research (Alty and Rodham, 1998; Liamputtong, 2007), but how much pain researchers should tolerate in the course of their working lives remains an unexplored question.

THE FACTORS INFLUENCING THE EMOTIONAL IMPACT ON RESEARCHERS WHO ARE CONDUCTING SENSITIVE RESEARCH As we have described above, sensitive research is increasingly normalised within the social sciences, and many researchers will, at one time or another in their careers, conduct a study that could be considered ‘sensitive’. For example, in the past decade, the lead author has been involved in studies that have included interventions for men with mental ill-health, mental health interventions for people with chronic health conditions, the lives of teenage fathers, male infertility, and the disposal of limbs after amputation. The second author has engaged in research with Black and ethnically-minoritised groups inside universities and the impacts of structural racism on their lived experiences. Chapters in Part 3 of this volume also attest to this normalisation. The context of any such sensitive research is mediated through a variety of factors, including the topic, the closeness of the topic to the researcher in their own life, the congruence of the topic with the researcher’s values, and the preparedness of the researcher for the experience. Such complexity is, however, unlikely to fit neatly into the ‘risk assessing’ models that contemporary governance and procedural ethics may often rely upon. This is also true for development work focused on integrity, which tends to situate research design as a process inside a system, focused on honesty, rigour, transparency and open communication, care and respect, and accountability (UK Research and Innovation Office, 2023). As a result, the possible well-being implications of emotional harm may not always be adequately considered (Fenge et al., 2019). Given that ‘[Emotion] is woven into the fabric of the interactions we are engaged in and it is, therefore, also central to the way we relate to ourselves as well as to others’ (Burkitt, 2012, p.459), understanding its centrality within sensitive research remains crucial. In the sections that follow, we will examine some of the key influences and aspects that intersect with emotional labour and its impact on researchers conducting sensitive research. We start with the organisational aspects that influence research so heavily.

42  Handbook of sensitive research in the social sciences Institutional and Structural Factors Shaping the Emotional Landscape of Conducting Sensitive Research Within UK Higher Education (and likely other HEIs within the Global North), there is an ever-increasing drive and pressure for research work to be ‘original’, ‘novel’ and ‘impactful’ as part of the focus on the assessment of the quality of research in terms of its significance, originality, and rigour. As Chubb (2017, p.34) notes, … impact requirements signal a new and direct imperative for researchers to quantify, qualify and articulate the fundamental value of the knowledge they create to society and the economy.

Whilst such shifts may not seem directly related to emotional labour for researchers, they herald an increasing need for research to be ‘meaningful’ to society. The imperative to make positive changes often requires pushing boundaries and deep engagement with participants, both of which inevitably contribute to the emotional labour that researchers experience. This valorisation of ‘impact’ may also inadvertently channel researchers towards the conduct of studies on sensitive topics with potentially vulnerable participants. Innovative or ground-breaking research is increasingly unlikely to occur at the intersection of low-risk, desk-based research, at least from the perspective of those assessing the merit of research and deciding on funding for such projects. As a result, judgements about research, like the UK Research Excellence Framework, have been classed as a Frankenstein’s monster, where the judged find themselves complicit in creating standards and thresholds that come to torment them (Bernard, 2017; Holmes, 2016). Some evidence suggests that ‘… focusing relentlessly on funder driven aims made researchers particularly vulnerable to longer-term negative emotions’ (Mallon & Elliott, 2019, p.13). The context in which research is being done, therefore, may have a substantial impact on the emotional labour of sensitive research, which is not always felt simply in the immediate doing of research but also in the experiences that wrap around fieldwork. Increasingly, research in higher education is founded on precarity. Insecure, fixed-term contracts are the mainstay of such research, leaving those who depend on such contracts in a permanent state of being at risk (Hall, 2024). The ‘eat what you kill’ model, whereby funding for research creates insecure research jobs, is the norm. Researchers, particularly those who are in the early career or postdoctoral stage, tend to end up working on research projects that are not necessarily their first choice of topic, including sensitive research. However, the need for employment is, of course, an overriding factor. As Patulny et al. (2020) note, those who conduct risky, meaningful work (which they describe contract academic work to be) are more likely to experience negative emotions and to hide those emotions within the workplace setting. In these contexts, choice is limited, and the ability to preserve one’s own emotional wellbeing becomes challenging. More significantly, pushback becomes unlikely, if not impossible, due to the employment vulnerability that the precariously employed experience. An additional factor is the oversupply of postdoctoral researchers competing for research positions, which stimulates rises in casualised or precarious employment. Research managers, driven by institutional demands for efficiencies, push down labour costs (#coronacontract, 20212). Thus, it almost becomes imperative that in such a competitive environment, one is able to internalise

The emotional labour of conducting sensitive research  43 and present a particular, resilient face to the institution and research funders in order to reduce vulnerability. The lead author, whilst working as a research assistant a couple of years after completing her doctorate, was asked to work on a project with families bereaved by suicide. She asked what support or supervision would be available for debriefing, feeling concerned about the level of emotional labour likely to be involved, only to be told there was none beyond standard management arrangements. She opted to ask not to be placed on that study, feeling that it was beyond her emotional capacities at that time. As researchers, we have to be both insightful and careful of our own empathic tendencies. In this example, studying this topic would have potentially been highly distressing for the lead author, especially since no additional support was being provided to handle such an emotive topic. As a result, she did not have to conduct the research. Such pushback on this was, however, only possible because she was permanently employed. Job security meant that she could be deployed to any number of projects without consequences for her employment status as a result of resisting involvement in a highly sensitive research project that was not felt to be compatible with good emotional wellbeing. This is, however, an extreme case formulation in higher education. The ability to say no to research activities that involve extensive emotional labour is, sadly, highly unusual due to the structural issues that surround research as a career. Too often, very early career researchers cannot share with more senior academics for fear of how they would be perceived (ButlerRees & Robinson, 2020). This is the broader context that underpins and conditions sensitive research and the emotional labour it entails. Such research does not happen in a vacuum; wider institutional, organisational, and societal factors all influence the experiences of researchers. For Butler-Rees and Robinson (2020, p.5): While precarity and everyday anxiety will always be an inherent part of the postgraduate research journey, it is important to recognise how these feelings may be increased by the neoliberalisation of higher education.

In such neoliberal contexts, the duty of care towards researchers is often greatly undermined or, worse, eroded. Researchers are increasingly being asked to give more and more of themselves, expending additional time and emotional labour, the effects of which contribute to burnout and exodus from the very organisations within which researchers have strived to find security (Chabot, 2019). The ‘more for less’ that precarity seeks to extract is often also a highly ableist doctrine (Butler-Rees & Robinson, 2020, p.4): The increasing workload and expectations of academics may therefore further exclude, marginalise and impede the progress of disabled scholars, who like myself are likely to find it near impossible to keep up with such demands.

These examples serve to highlight how the emotional labour researchers experience is not purely by virtue of being ‘out in the field’ but that the structures and context in which sensitive research is conducted, strived for, and lauded play a significant role in the emotional aspects of being a researcher. Such a message may seem overly pessimistic, but it is important that researchers do not see emotional labour as something that is another neo-liberal individual responsibility for them to manage or cope with.

44  Handbook of sensitive research in the social sciences Lived Experience and Personal Investment in Research It turns out that the greatest challenge and barrier to fieldwork is ourselves (Punch, 2012). Where researchers have the volition to pursue and choose their own research agenda, many are driven to select research on what we might consider to be sensitive topics due to personal interest in or curiosity about the topics themselves. Whilst research on how and why researchers select the research they do is limited, that which does exist suggests that the ‘puzzle’ of a research project, or its ability to contribute to new knowledge, is the greatest motivation (van Rijnsoever & Hessels, 2021). Sometimes, a personal experience can be a catalyst for the exploration of a new research topic, and such experiences remind us of ‘the importance of emotions in motivating and sustaining our research’ (Butler-Rees & Robinson, 2020, p.5). For example, the experience of a family member having an emergency amputation was ultimately the spark for the lead author beginning a new research agenda in relation to the preparation of patients who are undergoing amputations. Without this ‘trigger’, would that avenue of research have been explored? It’s quite unlikely. This matters because in our consideration of approaching a new research topic, we rarely focus on the researcher(s) themselves and what the pursuit of a sensitive topic will mean for their own emotional wellbeing (Pillay, 2023). In the example above, the sensitivity of the topic—recruiting those who have just had the life-changing procedure of an amputation—was not necessarily a deciding or driving factor in the decision to proceed with this research agenda. Naturally, the connection to the topic as a result of personal or familial experience creates a certain sensitivity alongside a strong intrinsic motivation. There are, therefore, emotions as driversat play here, and this may mean that researchers overlook emotions as obstaclesin doing so. Pillay (2023, p.406), in their poignant and personal reflection on their own choice of research area, gives further insight into this very aspect; My academic journey towards LGBTQ+ research began with a need for visibility, prompted by a curious search for psychological literature about people like me. This yearning has forced me to grapple with a flip side, the emotional labour of visibility and the ripple effect on my personal and professional life.

Similarly, Carroll (2013, p.557) notes, … the fertility problems recounted by the participants (many of whom were of similar age to me) crossed a sheer and tenuous separation between myself and the participant, to unite with my own deeply private emotions and desires relating to personal aspects of my identity.

In searching for answers, often related to our own senses of self or personal challenges and curiosities, researchers may then open up a direct line between their own personal vulnerabilities and their work, creating further emotional labour to manage (Seear & McLean, 2008). Nelson (2020, p.921), in their reflection on research, emotions, and self-identity, notes how the conduct of their research study was, in fact, transformative of their own identity. Prior to embarking on this research, I identified as a cis woman and bisexual/queer. Now I identify as non binary and the way in which I experience my queerness has transformed … The way in which my views on relationships and identities have changed over time has been both wonderful … and uncomfortable.

The emotional labour of conducting sensitive research  45 Time and again, the post hoc reflections of researchers on the personal and professional tensions they experienced in their research highlight how often the sensitive research topic and our own sensitivities as people may be intertwined. Yet, the very same researchers often note how, during the ‘doing’ of the research, they did not feel able to describe or discuss such emotional labour. Seear and McLean (2008), for example, describe how the entrenched belief that researchers should be ‘objective’ leads many to consider that self-reflection may, in fact, be considered professionally self-indulgent. This is particularly true where researchers are themselves ‘insiders’ within the very groups, communities, or topics that they are examining (Nelson, 2020). This fear of lacking ‘objective distance’ (Pearce, 2020) is exacerbated for those early in their careers. For instance, doctoral students may feel the need to ‘cover up’ the messy nature of fieldwork and the emotional aspects it engenders (Butler-Rees & Robinson, 2020) for fear of judgment from senior academics, supervisors included. Whilst this is largely due to the wider structural career-making/breaking potential that such a hierarchical and prestige-based system holds, significant ground has opened up around positionality statements that support reflection by students and supervisory teams. This also applies to research groups as a whole. A critical engagement with positionality accepts that attempts to stigmatise emotional labour within sensitive research only further silence around it (Waters et al., 2020). The acknowledgement that committing to print our emotional experiences as researchers is ‘exposing’ (Nelson, 2020) highlights how unless people continue to ‘speak up’, this silence will continue to be perpetuated. The personal, once again, is political. Ultimately, the strength of feeling researchers experience, particularly when the topic is personal to them, may be channelled to provide greater insight and empathy with participants and to dig deeper into the meaning of the phenomenon at hand. Here, the fluid nature of positionality helps to define a more meaningful engagement with sensitivities, vulnerabilities, and harms, both for the fieldwork cohort and the researcher (Bernard, 2017; Holmes, 2020). This may be intellectually, methodologically, and politically useful in generating counternarratives and standpoint theories (Johnson & Joseph-Salisbury, 2018). Whether it comes at too high a personal price remains a central question for our collective consideration. Emotional Labour as Unequal Experience Qualitative research, particularly that which engages in sensitive contexts, opens up the possibility of highly personal disclosures, whereby participants may be, in effect, ‘offloading’ their emotions onto the researcher (see also Chapter 1). As a female researcher, the lead author, who has conducted numerous studies with men about highly personal and sensitive aspects of their lives, the statement from participants, ‘I’ve never told anyone this before’, may be one other researchers are themselves familiar with. The heartbreak, anger, jealousy, despair, and frustration that men have reported during our studies into infertility are not unusual within sensitive research. The anonymous ear, often (but not always) of a female researcher, makes for some participants an ideal quasi-therapeutic encounter. Other studies of women’s experiences in academia highlight that extensive emotional labour is often carried out by women (Rickett & Morris, 2021). Much of the work at the forefront of discussing the need for greater focus on the emotional impacts of sensitive research is authored by female scholars (Carroll, 2013; Seear & McLean, 2008; Sherry, 2013). This is in part due to the relationship between feminist research and emotional reflexivity and the intersection of sensitive research topics within that, but again, the emotional labour of highlighting

46  Handbook of sensitive research in the social sciences the level of emotional work that sensitive research entails is itself largely gendered (Carroll, 2013). As Carroll (2013, p.558) notes; Given feminist concern regarding hidden, additional and unpaid labours that go unrecognised but are crucial to the performance of study, it is doubly important to attend to this gendered trend in the under-recognition of emotional labour in professional research study. It would be ironic if the high degree of emotional labour enacted predominantly by women in sensitive and feminist research remains under-recognised in the methodological debate surrounding these forms of sociological research.

The ongoing tension between awareness and recognition of emotional labour within sensitive research and professionalism by researchers often draws into focus the ways in which such ‘professionalism’ and positivist accounts of research are themselves embedded in what Seear and McLean call ‘masculine ways of knowing’ (Seear & McLean, 2008, p.11). These tensions are also mirrored in the rich range of autobiographical critiques of the struggle to work and conduct research while also trying to exist within the university context. Narratives have emerged from Black women (Ahmed, 2020; Ahmed, 2017; Gabriel & Tate, 2017), mothers or carers (Amsler & Motta, 2019), the Queer faculty (Davies & Neustifter, 2023), Indigenous scholars (Burkhart, 2004; Tuck, 2018) and so on. These researchers have to deploy more emotional and psychological energy in undertaking their research inside structures, cultures and practices that tend to make the validity of their existence dependent upon their productivity in a competitive environment. Productivity inside competing institutions and research teams lies at the heart of much of the daily struggle to exist as researchers, scholars, and teachers in higher education. It tends to calibrate the everyday practices of research because of the pressure to generate impact, entrepreneurial activity, excellence, knowledge transfer, or spill-over. Historically and materially, the tempo of success and impact has been set against the privilege represented by white, male, cis researchers or those who exhibit the behaviours of those ‘archetypal’ researchers. Thus, the desire to undertake sensitive research, which itself is emotionally demanding, inside a system that requires additional emotional labour in order to enable self-care is a double-bind for many researchers. Elsewhere, this has been referred to in relation to battle fatigue (Smith et al., 2011) and it has led individuals or networks of researchers made marginal to highlight ongoing institutional and structural injustices. For example, in response to the murder of George Floyd in 2020, several professional associations and networks highlighted how the practices of closed professions and institutions that reproduced social inequalities cannot simply be met by equality, diversity and inclusivity policies (see for instance, the American Economic Association, 2020; Particles for Justice, n.d.). This is not to say that male or non-binary researchers, or those who are straight or white, will not experience the emotional labour of sensitive topics. Equally, across research teams, there are questions to be asked about how the emotional labour of sensitive fieldwork is to be managed with care. Such teams include those with privilege or identity markers that tend to inoculate them from the everyday lived experiences of vulnerability and harm. However, such accounts are perhaps less frequent in the existing literature. One interesting account of the emotions of conducting sensitive research from a male perspective is that of Witty et al. (2014). Witty (in Witty et al., 2014, pp.17–18) carefully describes his experiences of conducting a study with men who had experienced penile cancer;

The emotional labour of conducting sensitive research  47 When participants released deep emotion, sometimes breaking down in tears, I could feel guilty for having facilitated a release of such emotions whilst being unable to attend to them in any therapeutic sense. Within these instances I was made very conscious of my lack of nurse training, experiencing a desire to attend to men’s emotional distress but lacking the skills to do so.

This points us towards the idea that the gendered differences around the management of emotions and the doing of emotional labour in research reflect the generalised societal expectation that women will attend to the emotional distress of others and that training is not required because it is more ‘innate’ for women to be emotionally intuitive. This is perhaps further supported by the idea that some suggest female researchers are more likely to ‘extract’ the rich and emotive insights (Arendell, 1997) lauded in qualitative enquiry, further positioning this emotional engagement as necessary but also fruitful. The requirement of women to deal with and manage emotional labour is seen as both invisible (unrecognised in formal structures in HE) and unquestioned (which then contributes to its invisibility as a form of ‘labour’) (Rickett & Morris, 2021). Yet, it may also be that for some researchers whose identity markers make it easier for fieldwork participants to identify with them or for whom there is an opportunity within sensitive research to develop group and self-identity, there is also the possibility for this to be empowering or liberatory. Kimura (2019) has articulated how laywomen in Japan engaged in citizen science around radioactive materials in food, post-Fukushima. In part, this challenged stereotypes of women as overreacting due to scientific illiteracy and reinforced popular ideas about women in science. McDonald (2013, 2016) has identified, through autoethnographic research, the ability of queer reflexivity to highlight the fluid, shifting nature of identity that enriches research engagement. Welcoming such reflexivity, including or especially in sensitive research contexts, as a gateway to a richer understanding of self and community has also been highlighted by Islam (2020) in relation to Muslim-on-Muslim research. Given the increasingly politicised nature of higher education and its relationship to society, an openness in relation to reflexivity, positionality, and accountability, might help in uncovering and addressing inequalities in emotional labour. This is important because, for instance, in the UK context, equality, diversity and inclusivity, or the idea of decolonising, have been reframed as contested ideologies, with ramifications for those engaged in sensitive research (Doharty et al., 2021; Hall et al., 2022). Here, we are reminded that lone and team-based research takes place within the context of institutions that are governed and regulated in a sector-wide terrain that claims neutrality, with a focus on value for money. This also impacts professional, practitioner, and end-user networks. Yet, the context for much sensitive research points beyond economic value towards the desire to centre values. As such, it needs to be treated ethically and with integrity.

MANAGING VULNERABILITY IN ACADEMIC RESEARCH The risk-assessing modus operandi of procedural ethics in the ethics committee format has, to some extent, illuminated some aspects of unequal risk in relation to the conduct of research. Increasingly, the notion of researchers going out alone into the field is covered by risk assessments or through the requirement of institutional ‘lone working’ policies. In relation to gendered violence, as Hunt (2022) notes, the risk of sexual harassment or sexual violence within

48  Handbook of sensitive research in the social sciences the field is a real and present issue for female researchers. Despite the risk and possibility of such harassment, there has been very limited investigation or discussion of these experiences in relation to the doing of research (Harries, 2022). Studies which could be defined as being sensitive research are perhaps more inclined than other topic areas to consider researchers going out into the private spaces of participants; for example, undertaking interviews in people’s homes. The notion of participants being more comfortable in a private setting if asked about emotive topics, where the risk of emotional display in public may cause further distress or unease to the participant, perhaps underpins this. As the chairs of a large health and life sciences faculty ethics committee, the authors see such requests from researchers from time to time. With our ethics committee ‘hat’ on, the presence of a researcher in a private space with an unknown person, asking sensitive questions about something that could be emotionally charged for both parties for the purpose of work, would put a researcher at a greater risk than they might experience in their everyday life. Only in the context of low-risk, non-triggering questions, with researchers in pairs, would the use of private spaces now routinely be considered acceptable (at least within our ethics committee). Much sensitive research is not considered routine and needs to unfold through discussion. In this, crucial importance is given to dialogue between researchers and the ethics committee seeking to balance risk and the potential for harm, including to the researcher(s), where there are potential vulnerabilities and sensitivities. In thinking through issues in relation to research integrity, such dialogue might usefully focus on honesty, rigour, transparency and open communication, care and respect, and accountability in a complex set of relationships involving participants, the environment, researcher(s), institutions, and society. Beyond this negotiation of, and dialogue around, the non-routine, meaningful reflection upon the context for the research is crucial. For instance, in relation to sexual harassment or even unwanted overfamiliarity, research demonstrates that this does not simply occur in private spaces. Harries (2022) describes her experiences in the field, conducting interviews in semi-public and public spaces with men, whereby she reports being ‘asked out’ three times, receiving a marriage proposal once, and having sexual intercourse suggested to her twice. Such experiences call into view the way in which gendered inequalities and the necessary emotional labour they entail are normalised within research. To this end, ‘the research interaction is viewed as a site in which the politics of intimacy exposes normative expectations and structures of inequality’ (Harries, 2022, p.680). The emotional labour of research, including sensitive research, is therefore not equal and demands recognition from institutions, including in the management of ethics and integrity. This matters because some people, or groups of people, are more predisposed to be required, formally and informally, to manage and cope with complex, burdensome and often harassing emotional labour in the course of their research work. Whether or not those who regulate institutional and professional research, through their engagement on ethics committees, have the personal and professional development to undertake this work is a crucial question. These committees have the responsibility to support research in sensitive contexts by managing emotional vulnerability and the potential for secondary trauma. For instance, emotional vulnerability within research is likely to be further heightened for those who are marginalised, such as those who are queer, trans, or whose sexual identities may be minoritised (Pearce, 2020). Researching of communities of which LGBTQIA+ scholars may themselves be part can lead to further secondary trauma, compounding the oppression, marginalisation, and discrimination that they already experience

The emotional labour of conducting sensitive research  49 within everyday life. According to Pearce (2020, p.815), ‘secondary trauma is a phenomenon in which people who have heard multiple stories of horrifying or shocking experiences from trauma victims begin to experience intrusive symptoms’. Such experiences of secondary trauma should be a serious concern for all within the research community, highlighting how emotional labour for researchers can and does tip over from a research issue to a wider societal issue that has serious consequences for the mental health and well-being of researchers. Mirroring work on racial battle fatigue, Pearce (2020, p.816, the Sistine Original) reflects: … while I survived my PhD, I have become considerably more emotionally vulnerable as a direct consequence both of my research and because of other events which took place during the same time period. I have learned that it is vital to consider my mental health carefully prior to undertaking a new project, and to prepare accordingly.

Inequalities, both gendered and those resulting from other forms of marginalisation and discrimination, deepen the unequal experience of emotional labour. All researchers may experience emotional labour in conducting sensitive research studies, but for some, additional emotional labour resulting from broader societal positions or intersections of personal identity may leave them bearing a heavier burden than is the case for others. This is why ethics committees, those who lead research teams, and those responsible for the strategic governance of research within higher education and professions have a responsibility to support those engaged in sensitive research in self-care. They ought to be accountable for creating structures, cultures and practices that openly and dialogically encourage self-care (O’Dwyer et al., 2018).

CONCLUSION AND FUTURE DIRECTIONS Sensitive research has the potential to re-traumatise participants and researchers. However, it also has the potential to support empowerment and liberatory activity for communities and individuals made marginal. Listening to and learning from a multiplicity of voices and engaging in a range of research contexts are central to our societal engagement with polycrises (Hall, 2024). In such an engagement, research emanating from universities, situated against disciplinary and professional codes and networks, provides energy for reimagining relations and conditions for social reproduction. As a result, it is incumbent upon those institutions, along with allied disciplinary and professional networks and organisations, to develop concrete strategies and processes for supporting researchers in undertaking this work. It may be that research is sensitive in relation to voice or the lack of voice, social or cultural marginalisation, or the political conditions that wrap around particular contexts. When connected to the everyday realities of inequality and power within the prestige economy of higher education research, addressing potential vulnerabilities and sensitivities, alongside the risk of harm, is fundamentally important. This work might usefully be realised in practical dialogue, led by those who have undertaken sensitive research, with researchers and institutions. There is a need for senior leaders, those involved in the governance and regulation of research, ethics committees, and research centres and teams, to understand the impacts of sensitive research upon researchers, participants, and society. Finding mechanisms that enable

50  Handbook of sensitive research in the social sciences concrete discussions to be led by researchers and participant groups, in ways that increase the reflexivity of institutions, is a starting point for increasing institutional literacy around sensitive research. Any such ‘solutions’ to the management of researcher emotions, therefore, need to move beyond the purely discursive. Whilst there has been much awareness raising in contemporary work around the topic, we must now collectively look to the wider structural factors and institutional safeguarding of researchers. Possible aspects for consideration include the following: 1. Continued campaigning against and reduction of the use of precarious forms of employment for conducting sensitive research are essential. Only by making wider structural changes to the ways in which higher education (particularly in the UK) is organised will we begin to provide safety and security for research staff to engage in research in less personally harmful ways. 2. The use, and as importantly, the evaluation, of the adoption of the ‘supervision’ model for debriefing emotionally burdensome work that is utilised by counselling and psychotherapy professionals for researchers. Developing an evidence base of how this type of approach may work for researchers will be important to make a case for any such intervention being a routine feature of academic work in the future. Any such models should be mindful of not asking already emotionally fatigued staff to take on additional supporting roles or to reinforce gendered aspects of care within research. 3. A decreased focus on boundary-pushing across research would be helpful; however, many scholars themselves are often attracted to such facets of study. The encouragement and normalisation of research that includes less risk and less sensitivity at all levels is likely a more pragmatic approach to take. Assessment of PhD proposals, for example, should look for projects that are intellectually interesting but not personally damaging to the proposed students. The inclusion of a statement assessing the sensitivity of the project and the potential impact on researchers in PhD applications and funded project applications would be sensible. Such statements would, however, need to be careful not to demand any disclosure from researchers of personal or other sensitive data. Building into application processes, the assumption that research itself can have an impact on researchers would be a useful signal that this is important and that protecting the emotional wellbeing of those who conduct or seek to conduct research matters. 4. Allyship matters. Those in senior positions, including directing and leading research programmes or research agendas, should provide meaningful allyship to researchers, especially those in junior, precarious, or vulnerable positions. Meaningful engagement with the sensitivity of research only occurs when we each check our own privilege and use our power for the collective good. Simple actions could include clearer trigger warnings for transcribers and research staff about the content of papers, interviews, transcripts, and so on, including clear information about the sensitivity of the topic in job advertisements to help researchers make informed decisions, providing meaningful support and discussion about the sensitive aspects of projects, and making sure that researcher wellbeing is foregrounded so that staff feel able to raise concerns before they become personally impactful. 5. Ethics committees should make sure that the researcher's impact on any research is considered in reviews and assessments of research. This should go beyond procedural aspects of ethics applications in terms of risk assessments or lone working protocols. It should

The emotional labour of conducting sensitive research  51 seek to understand how emotionally safe the research is and to make sure that appropriate suggestions are made where applicable to help ensure that the impact of sensitive research on those conducting it is well considered and that there are appropriate safeguards to help those conducting such research. This is especially pertinent when the researchers themselves are likely to experience additional inequities or emotional burdens. Understanding why the research is being conducted, for example personal motivation, may be a helpful way to frame this within the procedural framework of ethics applications. This is, of course, not an exhaustive list, but we hope this chapter provides a fresh way of conceptualising the challenges for researchers conducting emotionally sensitive research, specifically through the lens of the wider social and structural factors that shape such experiences and research activities. Protecting the emotional wellbeing of researchers is a shared endeavour, and one we must take seriously, in order to ensure that the future of research is a safe and fruitful space for everyone to engage in.

NOTES 1. Two such examples include the British Psychological Society (2021). Code of Ethics and Conduct, accessed 20 September 2024 at https://www​.bps​.org​.uk​/guideline​/code​ -ethics​-and​-conduct; Royal Society of Chemistry (2022). Guide to Ethics, accessed 20 September 2024 at https://www​.rsc​.org​/globalassets​/03​-membership​-community​/join​-us​/ membership​-regulations​/guide​-to​-ethics​.pdf. 2. https://coronacontract​.org/.

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54  Handbook of sensitive research in the social sciences Tokumitsu, M. (2014). In the name of love. Jacobin, accessed 20 September 2024 at https://jacobin​.com​ /2014​/01​/in​-the​-name​-of​-love/. Tuck, E. (2018). I do not want to haunt you but I will: Indigenous feminist theorizing on reluctant theories of change. Workshop presentation. Indigenous Feminisms Workshop, University of Alberta, accessed 20 September 2024 at https://vimeo​.com​/259409100. UK Research and Innovation Office (2023). What is Research Integrity? - UK Research Integrity Office, accessed 20 September 2024 at https://ukrio​.org​/research​-integrity​/what​-is​-research​-integrity/. Universities UK (2023). The Concordat to Support Research Integrity. Universities UK, accessed 20 September 2024 at https://www​.universitiesuk​.ac​.uk​/topics​/research​-and​-innovation​/concordat​ -support​-research​-integrity. van Rijnsoever, F. J. & Hessels, L. K. (2021). How academic researchers select collaborative research projects: A choice experiment. The Journal of Technology Transfer, 46(6), 1917–1948. https://doi​.org​ /10​.1007​/s10961​- 020​- 09833​-2. Waters, J., Westaby, C., Fowler, A., & Phillips, J. (2020). The emotional labour of doctoral criminological researchers. Methodological Innovations, 13(2), 2059799120925671. Wetherell, M. (2015). Trends in the turn to affect: A social psychological critique. Body & Society, 21(2), 139–166. https://doi​.org​/10​.1177​/1357034X14539020. Wilkinson, S., & Wilkinson, C. (2023). The role of positionality in research ‘gone wrong’: critical reflections on research involving young people. Children’s Geographies. http://doi​.org​/10​.1080​ /14733285​.2023​.2227598. Witty, K., Branney, P., Bullen, K., White, A., Evans, J., & Eardley, I. (2014). Engaging men with penile cancer in qualitative research: Reflections from an interview-based study. Nurse Researcher, 21(3), 13–19.

4. The art of ‘sensitive’ supervision: supporting, sharing and strengthening Sharon Mallon, Erica Borgstrom and Sam Murphy

INTRODUCTION The challenges of post-graduate supervision are well documented: the shift in role and the lack of formal training beyond the administrative role of supervision can mean many supervisors struggle to provide support for their students (Andrew et al., 2019). Students may also have multiple supervisors, each with their own approach and varying levels of experience and competence, leading one study to conclude that ‘accountability must be considered in expertise development program planning and decision-making’ (Bazrafkan et al., 2019, p.1). As many of the contributions in this collection attest, in sensitive research, the individual nature of research encounters and processes, in combination with the emotional responses we bring to these areas, means effective and safe supervision is essential for robust and effective doctoral-level study. However, even after many years of fieldwork as a researcher in a ‘sensitive’ area, some academics may struggle to transition towards supporting students working in similarly challenging areas. This chapter will explore how even a very knowledgeable and experienced academic can feel unexpectedly vulnerable within a supervisory team, particularly if their own experience of being supervised took place prior to some of the more recent acknowledgements of the emotional tensions of this work (Borgstrom, Mallon & Murphy, 2022). In the chapter, three experienced supervisors share their personal experiences of supervising students across a range of sensitive subjects, from suicide attempts, self-harm, and experiences of illness to end-of-life care and bereavement. It provides honest reflections on the challenges of this type of supervision, including issues related to setting realistic expectations, re-traumatisation, boundary maintenance and risk management for both students and participants. We conclude with a commentary that encourages supervisors to consider a framework of ‘Sharing, Supporting, and Strengthening’ when embarking upon supervising this type of work.

SENSITIVE RESEARCH AND SUPERVISION: SOME BACKGROUND The literature base advising supervisors on how best to oversee doctoral-level studies has grown considerably over the past two decades. Early texts focused on the individual tasks of supervision, with the various stages of a thesis being treated as distinct areas, each with its own challenges (Wisker, 2004; Delamont, Atkinson & Parry, 2004). However, there has been a noticeable shift towards texts with extended commentaries acknowledging the inherently ‘messy’ nature of doctoral-level study. These include first-hand accounts from students who have ‘happily and successfully’ made it through their studies but are willing to speak frankly 55

56  Handbook of sensitive research in the social sciences about the challenges of what is described as ‘complicated, rewarding experience(s)’ (Peabody, 2014, p.ix). This emergence has gone hand in hand with an increasing awareness of and concern about the levels of mental health distress among doctoral students (Jackman, Sanderson & Jacobs, 2021). Fortunately, the recent discussion of the various stresses has been far from simplistic and has included an acknowledgement that supervising students researching sensitive topics is likely to involve responding to multi-layered reactions (Mallon & Elliott, 2021). Collectively and individually, we have written about the emotional consequences for researchers involved in sensitive research (see Borgstrom, Mallon & Murphy, 2022 for a discussion; see also Chapters 1 & 3 in this volume). Our analysis suggested these researchers’ sensitivities were closely linked to the context of the research. In addition, they described how issues of identity, as well as political motivations, meant there was a strong personal and professional investment in the research. Included in these accounts are details of how to manage participants’ emotional reactions and how this can overlap or diverge from that of the researcher (Jones & Murphy, 2022). One recent scoping review of dissertations and theses identified a risk of secondary distress for graduate students who are conducting qualitative research on sensitive subjects (Orr, Durepos & Jack, 2021). The same study also highlighted that less than 5% (n = 11) of the dissertations they reviewed included a plan to mitigate psychological risk to the researcher. The need to actively plan to minimise the risk of emotional distress is something we have been actively working to highlight (See Mallon & Elliott, 2019). The responsibilities of universities to support early career researchers have also been highlighted by Velardo & Elliott (2021), who suggest that current research training processes and university support structures are not robust enough to protect novice researchers. Jackman, Sanderson & Jacobs (2021) suggest developing inductions to support mental health, and that wellbeing is key. Similarly, one of the authors of this chapter (SM) has drawn upon data from a roundtable with 12 researchers working across a range of ‘sensitive’ research areas to highlight how the academy might proactively work to improve the support that is provided to these students (Mallon & Elliott, 2021). This paper included guidance for supervisors; it is widely acknowledged that the supervision process is the dominant way in which the socialisation of doctoral students into academia takes place (Andrew et al., 2019). Notably, few students see themselves as active agents in developing their own networks (McAlpine, Castello & Pyhaltö, 2020). Significantly, empirical research has provided important knowledge about the different types of mentorship experiences in doctoral supervision, revealing how this can influence students’ wellbeing (Al Makhamreh & Stockley, 2020). It is difficult to argue against the notion that supervision is a key part of the support that is needed by students. Some have focused, as we do in this chapter, on how successful supervisors can use their experience to ensure they help students avoid some of the worst mistakes and pitfalls of work in this area (Delamont et al., 2004). Here, each of us presents a narrative of our own experiences, using it to reflect upon our concerns about the support provided to these researchers, including through their supervision processes.

The art of ‘sensitive’ supervision: supporting, sharing and strengthening  57

SUPERVISOR NARRATIVES Erica’s Narrative: Being Open to Challenging Assumptions I have been researching palliative and end-of-life care for nearly 15 years; over that time, I have undertaken my own PhD and have supervised, advised, examined, and mentored many others. Here, I discuss an aspect often not covered in PhD proposals (and sometimes not even in theses) on this topic—doctoral researcher well-being. Before I begin, I want to add the caveat that I do not presume that everyone will find every aspect of palliative, end-of-life, or death/dying research emotionally difficult; however, it can bring up a range of issues for individuals that they may not have considered before, including their own and others’ mortality. Coupled with the stresses of doing doctoral work, what can feel like existential threats or even enlightenment can impact the doing of doctoral work, including fieldwork, communicating with supervisors and writing the thesis or publication. After sharing a personal experience, I use three examples to show the types of issues that can arise and how I approach them. I do not offer them up as ‘perfect solutions’ but as a way to think about how we support researchers, especially during the doctoral phase. Let me first start with a personal example. Before my PhD, I was hired as a research assistant on an eight-month contract (see Borgstrom et al., 2010, 2013, 2016). My job was to analyse 200-plus essays written by medical students after they had met dying patients. They were asked to reflect on the encounter, both in terms of what they would do professionally and how it impacted them personally. I remember one team meeting when someone remarked how ‘difficult’ it was for these medical students to do these visits and essays. The presumption was that it was difficult because ‘death is difficult,’ and the students were young, with presumably little personal experience of death. The comment stuck with me as no one asked how it was for me to read the vivid accounts and hold space for the emotions shared. It especially struck me because the age of the students was explicitly stated as a reason for this suspected ‘difficulty’, yet I was the same age. This encounter taught me much about assumptions that operate in ‘sensitive’ research and the presumed distance one has during analytical processes. Since then, I have sought to understand and question such assumptions and consider how experiences influence how we make sense of data, ourselves, and our own being in the world. Now, in my own practice, one of the things I like to do early on when supervising someone is to ask what support system they tend to have around them, whether this be people, practices, groups, or routines. This can require a bit of trust to have been established between us already, especially if they realise they have not thought about this before or if they feel unsupported by those who may be considered ‘close to them’. If they mention specific people, it can be helpful to query whether they’ve discussed issues around death and dying with them previously. While some may have those they feel they can ‘share everything with’, it turns out that sometimes they may still feel reserved about some topics or view death as a ‘societal taboo’ (a view I try to help them challenge through the research). Many doctoral programmes require training alongside the research, and where appropriate, we develop training ideas or plans that may explicitly or implicitly strengthen their support systems. Another issue that is not uncommon, especially given the length of doctoral studies, is managing personal loss while studying dying and death. What this looks like and how it impacts the student will vary for each person and the context they find themselves in. During my PhD, I experienced several family bereavements and took some time (as an informal break) to care

58  Handbook of sensitive research in the social sciences for my dying grandmother in the USA shortly after I had finished data collection about endof-life care in the UK. Some students may need to have a study break to care for others or to take some time off following a bereavement; this can be a helpful strategy to reduce doctoral study programme expectations, but it can raise other issues in terms of longer-term concerns about progress and financial strain if study breaks are unfunded. Discussing these options and having ‘return to study’ conversations can support students experiencing loss. Regardless of the amount of time away from study, it is constructive to remember that there can be what I call ‘tentacles’ of grief—long, perhaps at times stuck, trails of feelings and impacts that last beyond the initial death and bereavement period. This can show up in doctoral studies as something that impacts motivation or focus or can make specific project-related tasks (such as data collection or analysis) emotionally complicated. Not everyone can be self-aware that grief can have such impacts, so it can be helpful to have non-judgmental ways of discussing loss and to know where to direct students should they benefit from conversations that extend beyond the student-supervisor relationship. The last example I want to highlight is similar to the previous one, but the loss or experience occurred before the studies began and may indeed be why someone took up doctoral study in the first place—a kind of personal motivation driving the research. Here, I have encountered students who are steadfast in their assumptions about how things are in their area of study (often based on their experience) and may struggle to ‘unpack’, question or challenge these, whether that be in their supervision, their analysis, or even their writing. There can be psychological and emotional safety in holding one’s beliefs as true. For supervisors, spotting when this is occurring is vital for helping the student learn how to reflect in a supportive manner critically. This can include teaching critical analysis on an unrelated topic first to embed the skills, encouraging reflective journalling, and exploring assumptions in supervision. Sometimes exploring ‘how would you feel if your data did not support this idea’ early on in training can prepare students to be open to multiple interpretations and to practise how they respond in a relatively supportive space (as compared to at a conference or in an oral exam/ viva). Sharon’s Narrative: Wisdom Not Trauma I struggled throughout my PhD studies but feel that much has changed since that time, both individually in my personal understanding of the experience and collectively in how we as academics respond to and understand researchers’ emotions in sensitive research. At the time of doing my research, I felt I had to remain largely silent about how tortured I felt by the writing process and the challenging subject matter. I hope that by writing honestly and reflectively about my experiences, I have contributed to this change. Here, I want to focus on areas of personal change and professional development that I noted have been most useful to my reflective practice as a supervisor. This includes a range of subject areas related to mental health, but the bulk of the reflection undertaken here relates to those who are studying in areas related to self-harm and suicide. My first learning point is that the creation of knowledge often takes place is often not only in relation to the topic but also in relation to the students’ understanding of themselves, including their reaction to the subject under study. While there is increasing awareness of the impact of this type of work on the researcher, it can be more difficult to predict how and when students might be impacted. This may be partly because, as Erica has already indicated,

The art of ‘sensitive’ supervision: supporting, sharing and strengthening  59 unexpected events may occur in the student’s life which connect with the area being studied. However, you can never tell which part of the student’s world will be dislocated in the efforts to examine the philosophy of knowledge itself or the particular topic under investigation. Related to this is the awareness that it is not necessarily just a research topic that makes a subject ‘sensitive’. For example, when the topic is as ‘sensitive’ as suicide, it is often assumed that providing support for students is dominated by managing emotions around the topic itself. However, one can never really know what emotions a PhD will bring forth. My personal PhD journey has allowed me to recognise that emotional naivety can sometimes be confused with emotional stability. This has been backed up by my experience of supervising students, as I have found that regardless of the mindset, resilience, or fortitude of the student at the outset of the PhD journey, the reaction to the subject over the length of time and depth of thought required for doctoral-level study, can be unpredictable. Exploring with the student where the sensitivity and emotional response are coming from is crucial—as is not making any assumptions about either resilience or vulnerability. Learning to listen and respond to emerging sensitivities is important in recognising that life events can perpetuate a reaction or that the student may simply get ground down by the study or by the meaning that is bound up in the doctorate. While this can be challenging to the inexperienced supervisor, with reflection and increasing confidence over the years, I have found this is part of the charming nature of supervising a student. I have an acceptance that one comes to know about something, and oneself, through doctoral study—and that it is my job as a supervisor to ensure that this knowledge is safely integrated into the lives of the students. That said, sometimes a sensitive subject is challenging in all the ways you might imagine it to be. For example, my doctoral work on suicide bereavement led to intrusive thoughts about suicide, dreams of those who had died, as well as a sense of existential hopelessness and futility that at times caused misery. I have found a similar pattern in some of my students; to see one’s own painful experience played out repeatedly, particularly among students who display emotional resilience at the outset of projects, requires significant internal strength and compassion. Yet, it can be a tremendous strength if boundaries around your past emotions are in place, as one can utilise them to bring empathic sensitivity to the supervision encounter and conjure a sense of competence that can inspire the student in the management of their own emotions. In order to support these students and transfer wisdom, not trauma, it is important that you make peace with your own experiences. I have reflected, at times with a therapist, on the psychological pain I experienced during my PhD. This has been invaluable in allowing me to supervise and engage with students, many of whom come to the area with the same passion. My supervisory relationship with students works with my co-supervisors to make it clear that I reject the idea that engaging in sensitive research is ever an ‘unemotional’ task. I make it clear that within the boundaries of my role as supervisor, I have an expectation that emotional support is part and parcel of the work for them. This relies on students being encouraged to see the distinction between these traumatic lives and their own, to be reminded that the creation of knowledge is often the creation of hope. Sam’s Narrative: On Being Kind in Supervisory Meetings My own PhD was in stillbirth. I chose this subject due to my personal experience—I remember clearly being warned by a fellow student who told me ‘not to do it’ as she was worried for

60  Handbook of sensitive research in the social sciences my wellbeing. I went ahead, albeit with a former therapist of mine on hand, in case I needed her. In the event, I found the PhD study itself more traumatic than any revisiting of my own stillbirth experience, but at no point did I resort to counselling. In terms of the trauma of study, it was a lonely journey fraught with self-doubt and worry. At one point, I felt that the data I was collecting was something everyone would know anyway, so what was the point of it all? It was determination, motivation, and sheer bloody-mindedness that got me through it. I was clear, then, that when being a supervisor myself, I would be conscious of my students’ sensibilities and be kind to them. I hope that I have, to a certain extent, achieved this, but I often reflect on what it means to be ‘kind’ in a supervisory relationship. The nature of the supervisor's role is to engage with students and their projects, support them as they grapple with theories and methodologies, and challenge them when necessary. It is not our role to be their friend, and they certainly don’t have to like us! But that does not preclude being kind. While challenging a student might be relatively straightforward when supervising an innocuous subject, once the student is fully immersed in interviewing, analysing and reporting on subjects that cover dying, chronic illness, and bereavement, I believe it becomes trickier to do so. In terms of my experience, I believe this is because impartiality can never be achieved, especially where students have participants whom they perceive to be like themselves or with whom they quickly bond. This can either mean they over-rely on the particular participant(s) (a trap I fell into while a student) or, more worryingly, find it difficult to engage with data that is collected from people who remind them of themselves. In circumstances where the students find themselves dealing with interviews and experiences that are ‘too close to home’, what does it mean to be kind? Is it to say, ‘don’t worry, leave that interview out’, or do you insist on that voice being included? The answer, of course, is easy: you have to insist on its use. The participant has given freely of their time, sometimes at an expense to themselves in respect of time, physical reserves, and emotional energy. To respect that participant is to ensure their inclusion in the thesis and their voice is heard. Thus, what I want to reflect on here is not the nature of the messages that, as supervisors, you might have to deliver to students but how we deliver those messages. You might already use phrases such as ‘we understand how hard you’ve worked’ or ‘obviously your ideas here are important’ to preface the difficult message you are about to give. However, by the time you reach the end of such phrases, students will then be expecting the ‘but’ that comes next. Such phrases are excellent, but once the difficult message is given, the supervisor needs to do more to soften the blow. Our job is about constructive criticism, not destructive, so the next step then is to help the student work positively to take and use the criticism. This, of course, has implications for all supervisors, no matter the topic, but we need to remember to be kind to our students. To deliver those difficult messages with kindness, without brutality, is a skill in itself. So how to do that? First comes the understanding that the message being given might be difficult to hear. This requires the supervisor to have more than a cursory understanding of the student’s positionality within the research. It also means that prior to meeting, the supervisor needs to have had time to reflect on the work submitted and, if there is a difficult conversation to be had, then to think about the messages to be given. This is not always easy in the academic world, where many colleagues are overloaded with teaching and research. This is further compounded if delivering such news requires a meeting with other supervisors beforehand. While it is okay for supervisors to disagree within the meeting, there are some points at which they need to

The art of ‘sensitive’ supervision: supporting, sharing and strengthening  61 sing from the same hymn sheet. Hence, time to meet and discuss the approach needs to be carved out. I have had to do this with several students since being a supervisor, and these meetings have proved to be immensely useful. On occasion, it has meant that the problems I thought I saw were not as troublesome as I presumed; at other times, the other supervisor has been relieved to mull over how best to provide feedback. Sometimes we decided who will be ‘bad cop’ and who will be ‘good cop’—by dividing up who provides which kinds of feedback and support. I see nothing wrong with this approach as the student will need an ally in the meeting—and someone the student feels able to check in with later. Indeed, if it becomes a very difficult meeting, it is useful for one of the supervisors to check in with the student afterwards. If problems are raised within the supervisory meeting itself, then supervisors need not rush in to comment. We are allowed thinking time, too, and words said in haste cannot always be retracted later. It is a fine balance—at the same time as saying to a student that they need to improve, think differently, work harder, etc., we also need to shore up their resilience and not break their confidence. We have a duty of care; indeed, we have many conflicting duties of care—not just to the student but to our fellow supervisors, the research community, the discipline within which we work, and to the academy. Being kind to our students is not always easy, but it is an effort worth making. And a box of tissues in the meeting room is never a bad idea.

CONCLUSION AND FUTURE DIRECTIONS Here, using personal testimony, we have identified key areas of tension when supervising a student who is researching a ‘sensitive’ topic. These include being unable to protect students from the emotional challenges of this work, finding a balance between supporting and pushing, and responding to ongoing or emerging crises and emotional sensitivity. Alongside this is the recognition that there may be emotional challenges (expected and unexpected) and that, as supervisors, we need to be prepared for this, particularly if the issue relates closely to one’s own experiences. Additionally, students need kind support to enable them to progress and challenge their own assumptions, but many supervisors do not have training in how to do this effectively. Lastly, students may, at times, experience events and emotions that result in a crisis, and it is the role of the supervisor to help them navigate this to continue to undertake their studies safely. In summary, we believe much of this work can be helpfully summed up using a framework of supporting, sharing, and strengthening. Supporting: Each of our narratives highlights how we see emotional support as a crucial part of doctoral supervision. However, we acknowledge that this support is not solely the responsibility of the supervisor; rather, they must also draw upon wider support systems, services, training plans, and resources that students can develop for themselves. In addition, we can appreciate that life events can happen during a PhD that can impact even the most resilient student. Study breaks can be helpful but can also add other stressors. Sharing the wisdom we have about the consequences of each of these options is crucial in allowing students to make decisions. Sharing: We should enter supervision relationships with an appreciation that, as we each were, students may be affected by what they study for a wide range of reasons, some of which they may not be able to self-identify but which they may come to appreciate through gentle

62  Handbook of sensitive research in the social sciences sharing of our stories. In addition, we urge other supervisors to be mindful of assumptions in this area, in the sense that they must be at pains not to assume what topics will be sensitive and why/for whom. Rather, we must be open to exploring this within supervisions, role modelling what supportive care looks like, as well as challenging assumptions and learning how to think critically about topics that may be ‘close to home.’ Above all, we should be willing to listen and share the load. Strengthening: Finally, being a supervisor involves strengthening oneself, resolving past traumas, and learning how to use them to encourage growth in others. We must also acknowledge that strengthening students comes hand in hand with being critical, but this does not preclude kindness, which is crucial to embedding and inducting our students into the academy. We have several recommendations to support supervisors in this type of work. 1. Researchers should reflect upon their personal experiences of undertaking research to ensure boundaries are in place prior to embarking on supervision. 2. Supervisors should educate students on the support that their university, professional organisations, and informal networks can offer. 3. Doctoral students should be encouraged to keep in contact with their peers and researchers who work in the same or similar fields for informal support. 4. Supervisors must work as a team to help support the student and recognise that, at times, the supervisor(s) may need some space from the project or topic. 5. Know that study breaks can be supportive but that they can have consequences for students that may not be helpful (that is, leading to delayed deadlines or unfunded periods of study that can make the student financially precarious). 6. Supervisors should be aware that while they need to be critical of their students’ work, this does not preclude them from being kind to the students. 7. Help students challenge their own assumptions but also be willing to challenge one’s own assumptions. 8. Finally, emotional support for these students is non-negotiable; they should be encouraged to make contact so they are not sitting with challenging thoughts and feelings. However, it is important to be clear about expectations/boundaries around contact so that students know what is reasonable.

REFERENCES Al Makhamreh, M. & Stockley, D. (2020). Mentorship and well-being: Examining doctoral students’ lived experiences in doctoral supervision context. International Journal of Mentoring and Coaching in Education, 9(1), 1–20. https://doi​.org​/10​.1108​/ IJMCE​- 02​-2019​- 0013. Andrew, K., Richards, R., & Fletcher, T. (2019). Navigating the personal challenges and sociopolitics of doctoral supervision. Studying Teacher Education, 15(3), 260–277. https://doi​.org​/10​.1080​/17425964​ .2019​.1634537. Bazrafkan, L., Yousefy, A., Amini, M., & Yamani, N. (2019). The journey of thesis supervisors from novice to expert: a grounded theory study. BMC Medical Education, 19, 320. https://doi​.org​/10​.1186​ /s12909​- 019​-1739​-z. Borgstrom, E., Cohn, S., & Barclay, S. (2010). Medical professionalism: conflicting values for tomorrow’s doctors. Journal of General Internal Medicine, 25(12), 1330–1336. https://doi​.org​/10​ .1007​/s11606​- 010​-1485​-8.

The art of ‘sensitive’ supervision: supporting, sharing and strengthening  63 Borgstrom, E., Barclay, S., & Cohn, S. (2013). Constructing denial as a disease object: accounts by medical students meeting dying patients. Sociology of Health and Illness, 35(3), 391–404. https://doi​ .org​/10​.1111​/j​.1467​-9566​.2012​.01487​.x. Borgstrom, E., Morris, R., Wood, D., Cohn, S., & Barclay, S. (2016). Learning to care: medical students’ reported value and evaluation of palliative care teaching involving meeting patients and reflective writing. BMC Medical Education, 16(1), 306. https://doi​.org​/10​.1186​/s12909​- 016​- 0827​- 6. Borgstrom, E., Mallon, S., & Murphy, S. (2022). Unpacking sensitive research: Epistemological and methodological implications. London: Routledge. Delamont, S., Atkinson, P., & Parry, O. (2004). Supervising the doctorate: A guide to success (2nd ed.). Maidenhead: Open University Press. Jackman, P., Sanderson, R., & Jacobs, L. (2023). Developing inductions to support mental health and wellbeing in doctoral researchers: findings from a qualitative co-design study with doctoral researchers and university stakeholders. European Journal of Higher Education, 13(1), 62–79. https://doi​.org​/10​.1080​/21568235​.2021​.1992293. Jackson, D., Power, T., & Usher, K. (2021). Feedback as a balancing act: Qualitative insights from an experienced multi-cultural sample of doctoral supervisors in nursing. Nurse Education in Practice, 54. https://doi​.org​/10​.1016​/j​.nepr​.2021​.103125. Jones, K. & Murphy, S. (2022). Researching perinatal death: managing the myriad of emotions in the field. In E. Borgstrom, S. Mallon & S. Murphy (eds), Unpacking sensitive research epistemological and methodological implications. London: Routledge. Mallon, S. & Elliott, I. (2019). The emotional risks of turning stories into data: An exploration of the experiences of qualitative researchers working on sensitive topics. Societies, 9(3), 62. https://doi​.org​ /10​.3390​/soc9030062. Mallon, S. & Elliott I. (2021). What is ‘sensitive’ about sensitive research? The sensitive researchers’ perspective. International Journal of Social Research Methodology, 24(5), 523–535. https://doi​.org​ /10​.1080​/13645579​.2020​.1857966. McAlpine, L., Castello, M., & Pyhaltö, K. (2020). What influences PhD graduate trajectories during the degree: a research-based policy agenda. Higher Education, 80(6), 1011–1043. https://doi​.org​/10​.1007​ /s10734​- 019​- 00448​-7. Orr, E., Durepos, P., Jones, V., & Jack, S. M. (2021). Risk of secondary distress for graduate students conducting qualitative research on sensitive subjects: A scoping review of Canadian dissertations and theses. Global Qualitative Nursing Research, 8. https://doi​.org​/10​.1177​/2333393621993803. Peabody, R. (2014). The Unruly PhD. New York: Palgrave Macmillan. Velardo, S. & Elliott, S. (2021). The emotional well-being of doctoral students conducting qualitative research with vulnerable populations. The Qualitative Report, 26(5), 1522–1545. https://doi​.org​/10​ .46743​/2160​-3715​/2021​.4421. Wisker, G. (2005). The good supervisor. Basingstoke: Palgrave Macmillan.

5. ‘Majority doesn’t exist’: a critical perspective on research with LGBTQ+ people Clifford Lewis and Nina Reynolds

INTRODUCTION More and more countries have sought to protect people of diverse sexual orientations and gender identities commonly aggregated under the LGBTQ+ acronym (lesbian, gay, bisexual, trans, queer, and other diverse identities) through anti-discrimination legislation, with some even recognising the right of same-sex people to marry and have children. However, legislation to protect minoritised groups does not guarantee social acceptance but instead makes discrimination covert and hard to regulate (McLean, 2019). While legislation may serve to discourage conscious acts of discrimination that are overt and intended, it may do little to influence unconscious bias that emerges through normative socialisation (Consul et al., 2021). We use the word normative here to denote characteristics associated with the perceived majority—which may be characterised by gender identity, sexual orientation, race and/or culture. Unconscious biases operate at a subconscious and automatic level (Teal et al., 2012), leading scholars to explain it as ‘human nature’ (Consul et al., 2021, p.769). Such biases reinforce the position of dominant groups while concurrently undermining the minoritised (Sidanius & Pratto, 1999). These biases can be particularly detrimental as they are perpetuated by people who may believe they are not prejudiced and may not enact processes to manage it (Teal et al., 2012). As an act of human inquiry, the design and conduct of research in the social sciences are not immune to unconscious bias. Sue (2010) positions unconscious forms of discrimination as microaggressions that are experienced by minoritised groups on a daily basis. Such aggression represents behaviours and statements that communicate negatively about members of a target group, undermine their sense of self and self-worth, and detrimentally impact their health and wellbeing (Nadal, 2019). Such microaggressions may not be intended but are the outcome of socialisation in a heteronormative world that positions diverse identities as unnatural and deviant. Nadal et al. (2010) advance a typology of microaggressions experienced by the LGBTQ+ communities, which includes: (i) the use of heterosexist or transphobic terminology that others LGBTQ+ identities; (ii) the endorsement of heteronormative or gender-conforming culture/behaviours; (iii) assumptions about the universality of LGBTQ experiences that ignore the diversity encapsulated by the acronym; and (iv) the assumptions of sexual pathology/abnormality. Indeed, such microaggressions artificially normalise a hegemony underpinned by heterosexual and cis-gendered ideologies and can seep into interactions conducted as part of research praxis. Often, research projects are designed and implemented by members of the dominant majority, whose lived experience may not enable them to identify and confront their own biases (Lewis, Mehmet, Quinton et al., 2023). Arguably, the notion of respect and beneficence underpinning the ethical conduct of research (the British Psychological Society, 2014; National Health and 64

‘Majority doesn’t exist’: a critical perspective on research with LGBTQ+ people  65 Medical Research Council, 2007 (2018), for example) can only be achieved if researchers identify and manage their biases—conscious or unconscious. This chapter aims to advance considerations to make researchers more aware of their unconscious bias and how it may impact their research practice. We take a critical lens to challenge social inequities within the research process caused by the influence of dominant ideologies (Giroux, 1983). In doing so, we position research in the social sciences as a system that is influenced by, and in turn can influence, discourses that privilege hegemonic power structures and ideologies. Given the human influence in the design, conduct, and interpretation of research, the process is not free of bias – conscious or unconscious. Such bias can directly harm those who participate and undermine the research findings while indirectly having long-term consequences for marginalised groups based on the policies and practices informed by the research. We take the view that, as researchers, we are bound by our own lived and scholarly experience; however, through reflection, we can overcome some biases. Accordingly, we propose considerations to facilitate these reflections within the context of research with LGBTQ+ people (see also Chapters 28 & 29 in this volume). A brief overview of the LGBTQ+ communities is now provided.

THE SIGNIFICANCE OF LGBTQ+ The LGBTQ+ acronym emerged as a form of collective protest based on the reasoning that individuals who identified as lesbian, gay, bisexual, trans, queer, or with another diverse sexual orientation and/or gender identity would be more successful at gaining their (human) rights in Western society if they protested together (Funk, 2019). The acronym, however, while useful in protest, has served to undermine the diversity inherent within the communities, conflating the lived experiences of those with a diverse sexual orientation (lesbian, gay, bisexual) with those who have a diverse gender identity (trans). Historically, people with a diverse gender identity and/or sexual orientation have been positioned as the antithesis of the norm and an aversion to society (Lewis, 2023). It was only in 1992 that homosexuality was removed from the International Classification of Diseases by the World Health Organisation (Burton, 2023). At the time of writing, same-sex sexual acts are still criminalised in 65 jurisdictions and transgender expressions in 14 jurisdictions (Human Dignity Trust, 2023). Reports indicate that approximately 10 per cent of the population is born with a diverse sexual orientation (Perales & Campbell, 2019), but an estimated 83 per cent globally are not public about their identity due to fears of prejudice and violence (Pachankis & Bränström, 2019). At the same time, up to 5 per cent of the population is trans and/or gender-diverse (TransHub, 2020). Given the prevalence of LGBTQ+ people within the population, researchers are likely to engage with LGBTQ+ participants even in research not directly focused on LGBTQ+ identities. LGBTQ+ people continue to experience prejudice within society. In Australia, where laws have been enacted to protect LGBTQ+ rights, 60 per cent of LGBTQ+ students report feeling unsafe in secondary school, and LGBTQ+ employees are twice as likely to experience discrimination in the workplace (The Equality Project, 2023). Such social prejudice, when internalised, results in unique mental health challenges and stigma, complicating the relationship between how individuals see themselves and how they express themselves publicly (Jaspal & Breakwell, 2022). Accordingly, creating a safe environment through the design and implementation of research practices can help foster participation where LGBTQ+ people feel

66  Handbook of sensitive research in the social sciences empowered to express their identity and describe their lived experiences without fear of social judgement. Our aim in this chapter is to advance general considerations that are relevant for researchers whether or not their research is specifically focused on LGBTQ+ populations. To do so, we take a critical stance, drawing on Ghaziani and Brim’s (2019) four propositions for queering methods as a framework to propose considerations for reducing unconscious bias in research practice. We discuss these next.

THE FOUR PROPOSITIONS Ghaziani and Brim (2019), drawing on queer theory, advance four propositions relevant for researchers when queering methods. They call on researchers to reject (1) unchanging categories, (2) impermeable categories, (3) interest group politics, and (4) dualisms. •

•

•

•

The necessity to reject unchanging categories derives from the socially constructed nature of categories where, as society changes, those categories also evolve. Sexual and gender identities, as we understand them, are constantly evolving as we further our understanding of human lived experiences. This evolution is marked by changing sensitivities, role performance, and expectations from those who fit within a category and can vary over time and between cultures. Researchers need to be aware of these changes when considering both the necessity for and any definitions of categories they believe are relevant to their research. Impermeable categories are based on the principle that an individual’s membership in categories is static and clear-cut. However, an individual’s identities and behaviours may not always align with the categories and boundaries they are socially assigned. For instance, identifying as heterosexual does not preclude homosexual encounters. This may be particularly the case for LGBTQ+ identities, where stigma may prevent the alignment of behaviours with the social categories one is classified within. As such, rejecting impermeable categories enables category membership to be porous and evolving. The need to reject interest group politics highlights the importance of identifying power structures that inform identity politics as they are reproduced through the research process. Rejection of interest group politics might include explicit consideration of issues related to intersectionality, considering the power dynamics inherent when an individual experiences multiplicative disadvantage based on their multiple identity categories. Similarly, researchers may also need to question whether all relevant information is being collected as part of the research process. Dualisms implicitly place value on conceptually binary categories such as male or female, gay or straight, where being a member of one group immediately places that individual in contrast to members of another group. In reality, the human condition is multifaceted. For instance, not everyone is either biologically male or female (intersex people, for example), nor is everyone either heterosexual or homosexual (bisexual, pansexual, and asexual people). In the queer space, dualisms and their associated binaries need to be rejected to enable research to capture the fluidity of spaces that represent gender, sex, and sexuality.

‘Majority doesn’t exist’: a critical perspective on research with LGBTQ+ people  67

Table 5.1  Considerations for research practice Proposition

Application

Consideration emerging

Reject unchanging categories

The considerations under this proposition focus on highlighting how categories can change over time. At the macro level, this could include changes in how categories are defined and used, while at the micro level, this can have implications for how individuals see themselves. The considerations urge us to consider how we inform ourselves as researchers to ensure we are demonstrating respect for our participants.

Consider the evolving nature of language. Consider the evolving nature of self-identity. Consider cultural influence on the manifestation of identities.

Reject impermeable categories

The considerations under this proposition focus on highlighting how categories can be fluid and not mutually exclusive. Individuals can be members of multiple and potentially conflicting categories (based on accepted societal norms and classifications) at the same time. The propositions urge us to consider how the impermeability of categories can be constructed based on heteronormative constructions and imposed alignments between behaviour and identities.

Consider when behaviours do not indicate identities. Consider the imposition of cis-gendered heterosexual norms. Consider diversity within LGBTQ+ identities.

Reject interest group politics

The consideration under this proposition focuses on destabilising heteronormativity and examining the power dynamics that heteronormativity fosters within research practice that may minoritise diverse identities.

Consider how participants may be minoritised. ​

Reject dualisms

The consideration under this proposition discourages the use of binary categories, instead encouraging a focus on continuums and spaces.

Consider spaces rather than categories.

Looking across these four propositions (rejecting unchanging and impermeable categories, interest group politics, and dualisms) helps researchers to remove unconscious expectations about categories. For instance, the expectation that those born male present and act in a masculine way and are attracted to those born female. These rejections facilitate the recognition of a reality where categories are constantly emerging, multiplicative, and plural, informing the identities an individual may classify themselves within and display. Underpinning these propositions is a call to embrace the messiness of social research and dismantle the structures of heteronormativity in how they may manifest within the research context. It is our aim to extend these propositions by putting forward specific considerations to help deconstruct unconscious bias in research. Table 5.1 summarises the considerations proposed in view of each proposition.

68  Handbook of sensitive research in the social sciences

CONSIDERATIONS FOR SENSITIVE LGBTQ+ RESEARCH Considerations are now presented based on the above four propositions and drawn from experience in conducting research with LGBTQ+ people and various engagements on ethical practice in LGBTQ+ research. The considerations presented are not mutually exclusive, given they are unified in their focus on making research more sensitive to the needs of LGBTQ+ people. They are intended to provide researchers with prompts that can be implemented within research practice—and are not designed to be prescriptive—considering projects differ in scope and context. Before discussing the considerations derived from Ghaziani and Brim (2019), we put forward two additional considerations to highlight our belief that underpinning the notion of sensitive research is the need for self-reflection and consultation. Consider Commencing with Self-reflection Reflection should seek to identify and destabilise our own beliefs and knowledge about a group, or groups, of people we are likely to reach as part of a research project. As individuals socialised within a system of beliefs, attitudes, and values that have hitherto favoured heteronormativity, we all carry some form of unconscious bias (Lewis, Mehmet, Quinton et al., 2023). Critical self-reflection can help uncover some of our own biases that we bring to the research, which can permeate the design of the study and how results are analysed. Earlier work on gay men in tourism, for instance, focused on sexual promiscuity, creating a narrative that gay men travelled for sex, and produced a reductionist view of travel motivations based purely on sexual desire (Ong et al., 2020). Self-reflection begins with reflecting on who is likely to participate in the study, given the sample being studied and the identities and lived experiences likely to be represented. For instance, even a study focusing on mainstream consumers will likely include people with disabilities, people with diverse sexual orientations, and people who fit both categories. The composition of a study focusing on a geographic area may also include people with specific identities—for example, the inner-west of Sydney (Australia) has a larger LGBTQ+ population compared to the Western suburbs, which has a larger population of first-generation migrants. Both groups require different sensitivities to enable them to participate in the study. Reflecting on the types of people who are likely to participate can help implement processes to identify and manage unconscious biases that are likely to emerge. Self-reflection could also be designed to understand and remedy the limits of our own knowledge and experience (Coffin et al., 2016). As researchers, we may not understand the intricacies within the lived experiences of different groups because our own experience and knowledge do not enable us to do so. For instance, a gay man who may understand what it means to be attracted to a person of the same sex would not be able to comprehend being attracted to a person of the opposite sex in the same way, whereas an asexual person may not understand the draw of sex in anything other than an intellectual way. Understanding the limits of our experience can help identify blind spots we may have and preemptively seek to remedy them through self-education.

‘Majority doesn’t exist’: a critical perspective on research with LGBTQ+ people  69 Consider Gaining Insider Perspectives Pilot testing is a common practice in quantitative research, particularly designed to ensure questions are worded appropriately and participants understand the meaning of those questions (Malhotra, 2015). Similarly, drawing on the perspective of others to ensure the questions and approaches are sensitive can help enhance the quality of the findings. Consulting with LGBTQ+ advocacy organisations and individuals to explore the focus of the research, design methods and research instruments, and inform the interpretation of the findings can help by adding an emic (or insider’s) perspective where the researcher may not have such a perspective. This can also be the case when working across cultures. For instance, as a gay scholar, when the first author was conducting research in India, understanding the nuances of the Indian LGBTQ+ culture was essential to ensure participants felt safe participating in the study. This was particularly important considering the Indian context, where LGBTQ+ identities are significantly socially stigmatised, in comparison to Australia, where the first author lives, and there is (somewhat and in some places) greater acceptance. It is, however, also noted that advocacy organisations and LGBTQ+ individuals may approach the research through their own lens, and accordingly, researchers should consider and manage the agendas their participation may bring. Consider the Evolving Nature of Language Language can play a significant role in demonstrating respect for diverse identities, helping to acknowledge and validate how individuals see themselves (Lewis & Reynolds, 2021). However, at a macro level, language is constantly evolving as we better understand the nuances of different characteristics and identities. An example of this evolution is the move towards person-first language, such as ‘person with a disability,’ which does not centre the disability as a defining characteristic of the individual. Within the LGBTQ+ context, as more forms of sexual and gender diversity gain prominence, the language used to describe them has also evolved. For instance, while it was common practice to refer to people who cross-dressed as ‘transvestites,’ the same word is now seen as unacceptable because of the medical connotations associated with ‘transvestism.’ In contrast, the word ‘queer,’ previously used as a slur, has now been reclaimed by LGBTQ+ communities, integrated into the acronym, and even adopted as an identity category for those who do not feel they effectively fit a specific category (Knee & Anderson, 2021). Another example of such evolution is the growing understanding of different forms of sexual orientation—not just based on sex, but on aspects like personality and intellect (sapiosexual and pansexual). These identities have entered mainstream usage relatively recently, paralleling the growing understanding of sexual orientation. Ensuring that the language and terminology used are contemporary and demonstrate respect is important in all stages of the research process, from designing recruitment material (such as participant information sheets and participant recruitment screeners) and research instruments (designing questions and categories used in surveys, for example) to reporting on the findings.

70  Handbook of sensitive research in the social sciences Consider the Evolving Nature of Self-identity At an individual level, how one defines their identity may also not be fixed and can change over time. It is not uncommon for gay men, for instance, to come out first as bisexual before they come out as gay (Rasmussen, 2004). For some, coming out as bisexual first allows them to test social attitudes, while for others, this defines an evolution of how they see themselves moving from heterosexual, as socially assigned and expected by birth, to self-identifying as gay. Relatedly, gender as a fixed identity can also serve to classify individuals artificially into categories they do not consistently identify with. For instance, gender-fluid individuals may identify with different gender identities at different times and enact behaviour in line with those identities. This has implications for the language used in research questions, moving away from ‘what is your gender?’ towards ‘what is your current gender identity?’, acknowledging both the transient nature of the response and that gender is an identity. Individuals may also see and present themselves differently based on context. For instance, LGBTQ+ people from conservative communities may adopt normative identities and behaviours within their home environment in order to manage the prejudice they experience but may adopt identities aligned with sexual orientation and gender identity when travelling to more accepting spaces (Lewis, Mehmet & McLaren, 2023). Forcing individuals to adopt a fixed identity in research not only ignores the complexity of one’s lived experience but also disrespects how individuals see themselves—and can devalue their own self-identity. Consider Cultural Influence on the Manifestation of Identities Categories may change across cultural contexts, given that identities are socially constructed. The LGBTQ+ acronym, we acknowledge, originated in the West and presents a Westernised perspective of sexuality and gender without capturing identities experienced within other contexts (LaFont, 2007). For instance, in India, the word hijra is used to define a community of people who, within Western parlance, are termed intersex and trans. Similarly, some cultures acknowledge additional genders, such as two-spirit within Native American cultures and Fa’afafine within the Samoan diaspora. Within these contexts, imposing Westernised perspectives may not only detract from the research but also disrespect how individuals see themselves within their culture. Cultural context may also influence the lived experience of people with diverse gender and sexual orientations. Typically, LGBTQ+ identities have been imagined and constructed as White, displacing those who come from other ethnic groups (Lewis, Chandra et al., 2023). Cultural context may influence the socio-economic position of people with diverse gender and sexual orientations. For instance, in a study in progress in India, it has become apparent that people with diverse sexual orientations experience greater stigma compared to those with diverse gender orientations. One explanation proposed was that diverse sexual orientations are seen as a Western import, while hijras have been a part of Indian history—normalising such expressions to some extent. However, hijras in India typically live below the poverty line (Goel, 2016), impacting how they participate in society, and having implications for how researchers may reach them to collect data. Culture may not only play a role in an international context but also within a country. For instance, in rural Australia, conservative ideologies based on religious beliefs have created a culture where LGBTQ+ people perceive greater prejudice compared to their metropolitan

‘Majority doesn’t exist’: a critical perspective on research with LGBTQ+ people  71 counterparts (Lewis, Mehmet & McLaren, 2023). This results in rural LGBTQ+ people typically remaining in the closet and hiding their identity. Conducting research with this group requires considerations of how a safe space can be created, as they would be less likely to interact or visit a place known to be LGBTQ+ friendly due to fears of being outed. Online research methods could help in this context, removing the need for physical space while enabling a form of anonymity. Consider when Behaviours do not Indicate Identities While it is commonly accepted that people behave in ways congruent with their identity (Tajfel, 1974), this may not always be the case, particularly when identities are stigmatised. The prejudice LGBTQ+ people experience can mean that, for some, it is safer not to disclose their orientation publicly—though they may act in ways consistent with it privately. For instance, not all men who engage in sexual activity with other men see themselves as gay or bisexual. For this reason, HIV Management in Australasia has adopted the phrase ‘men who have sex with men’ rather than using terms like gay, bisexual, and/or homosexual, which would suggest an identity (see: https://hivmanagement​.ashm​.org​.au/). This example of HIV illustrates it is important for researchers to question if the focus of their research is on behaviour or an identity. Indeed, in this context, focusing on identity (gay, bisexual, and/or homosexual) instead of behaviour (men having sex with other men) could lead to the development of health promotion material that does not resonate with the audience it should impact. Ascribing an identity based on behaviour can impose an identity where one may not believe an identity exists, disrespecting the individual’s agency to identify the way they want. This may play out in the context of ascribing a gender identity based on one’s birth sex—given that one’s identity and behaviours used to express oneself can depart from one’s birth sex. Relatedly, trans people who behave in ways consistent with the opposite sex may also not identify as ‘trans’ but instead with the opposite sex. As one participant told the lead author, ‘I’m a woman, not a trans woman’. At the same time, LGBTQ+ people who identify with a diverse sexual or gender orientation may not see their identity as being salient in their day-today lives. For this reason, in research where identity is important, researchers should enable participants to define their own identity and potentially indicate the centrality of that identity to them. This divergence between behaviour and identity needs to be kept in mind during data collection and in the analysis/interpretation phase, as it can be common for researchers to ascribe groupings. Consider the Imposition of Cis-gendered Heterosexual Norms We are socialised in a cis-gendered (where one’s birth sex and gender identity align) heteronormative (where people are attracted to the opposite sex) world and internalise beliefs based on what society defines as ‘normal’. However, such constructions of ‘normal’ are artificial and can serve to regulate identities and relations permissible within a space and place by positioning those that depart as ‘abnormal’ and ‘deviant’ (Sidanius & Pratto, 1999). These norms can extend to the forms and types of relationships one is permitted to have. For instance, asexual people may not experience any sexual interest in members of any sex, challenging the very stability of sexuality as universal. Similarly, research in Australia suggests that 14 per cent of gay men are in a committed and strictly monogamous relationship (Prestage et al., 2014),

72  Handbook of sensitive research in the social sciences suggesting that the number of partners an individual may have may differ from what is perceived to be the norm. Imposing notions of monogamy may result in collecting incorrect data concerning relationship status and family dynamics. Relatedly, because of socialisation, we may also ascribe identities differently from how individuals see themselves. The following relationship illustrates how identities can be ascribed based on cis-het norms: John and Michelle began a relationship when John identified as a heterosexual male and Michelle as a heterosexual female. John transitioned to Jane to align their gender expression (how one presents oneself to the world) with their female gender identity (how one sees oneself). Jane and Michelle continue to remain in a relationship. Externally, while this relationship may be viewed as a same-sex relationship (Jane and Michelle both look female)—where identity is ascribed to the individuals, the individuals involved identify as a heterosexual couple. Accordingly, LGBTQ+ identities can be complex, requiring researchers to understand how individuals see themselves as opposed to how they appear externally. Consider Diversity within LGBTQ+ Identities The LGBTQ+ acronym combines individuals with diverse sexual orientations and gender identities, creating an illusion of homogeneity. Underpinning this acronym are complex elements that are not mutually exclusive, including: 1 . Sex: the characteristics one is born with, which include male, female, or intersex. 2. Gender identity: how one sees oneself, which may or may not align with one’s sex but includes male, female, non-binary, gender-fluid, and so on. 3. Gender expression: how one chooses to express oneself, which can be consistent with one’s sex or align with what is socially associated with the opposite sex. 4. Sexual orientation: who one is attracted to (male, female, etc.) or what draws one’s attraction (sex vs. personality/intellect). 5. Sexual identity: how one publicly presents oneself. Sexuality and gender are not mutually exclusive, and individuals can identify with diverse sexual orientations and diverse gender identities. For instance, an individual may be a trans male (born female and transitioned to male) and gay. Relatedly, an individual may have a male gender identity but choose to express their gender as female by using clothing and accessories socially ascribed to females. This has implications for the type of data that is collected and how it is analysed. For instance, depending on the focus of the study, researchers may choose to collect and analyse data in view of all five descriptors noted above. However, caution needs to be exercised in collecting data relevant to the project and its scope. For instance, when studying clothing choices, collecting data on biological sex may be less important compared to collecting data on gender identity or gender expression. LGBTQ+ experiences may also differ based on the impact of confounding social categories such as ethnicity/race, socio-economic grouping, and ability—to name a few. Reducing LGBTQ+ experiences to a singular axis (that is, just sexual orientation or gender) may run the risk of ignoring the nuances in an individual’s lived experience, with research finding that LGBTQ+ people with an intersectional identity are often worse off compared to the broader LGBTQ+ communities (Prayag et al., 2023). Defining the characteristics that may be relevant to the context of the study can help collect data that has a stronger impact on practice.

‘Majority doesn’t exist’: a critical perspective on research with LGBTQ+ people  73 Consider how Participants may be Minoritised Given the prevalence of LGBTQ+ people within the population, it is inevitable that studies would capture LGBTQ+ identities. For instance, in a survey of n=300, it is likely that 30 respondents have a diverse sexual orientation (10 per cent of the population), and 15 have a diverse gender identity (5 per cent of the population). While these identities may sometimes be incidental to the study, it is important that research practices do not further marginalise them. Such marginalisation may happen when individuals are othered through questions on gender (in the case of response categories like male, female, or other). The implication emerging from the use of the word other here is that the individual departs from what society considers normal and important to measure (Lewis & Reynolds, 2021). Even the ordering of response categories can signal social power dynamics. This argument has been previously made in the prominence of males as the first response category in questions about gender. In relation to the LGBTQ+ communities, positioning normative identities first serves to position diverse identities as a minority, lacking the same status and gaining validity only when compared to the ‘norm.’ Depending on the population being surveyed, researchers may consider randomly rotating or even reversing response options (starting with minoritised groups). Consider Spaces rather than Categories LGBTQ+ identities related to gender identity and sexuality are commonly positioned along a binary continuum—male/female, homosexual/bisexual/heterosexual. While these extremes, or dualisms, need to be rejected, it might also be necessary to reject the notion of a continuum connecting those extremes. Gender identities, for instance, can fall outside the continuum of male/female (non-binary, agender, pangender, genderqueer, or third gender). In the same way, sexuality along a continuum of the gender one is attracted to does not capture those individuals who are either not or rarely sexually attracted to others (asexual) or those whose sexual attraction is not exclusively, or at all, based on gender (demisexual, pansexual, omnisexual, sapiosexual). As gender identity and sexuality are socially constructed and evolving, labels for gender and sexuality might not be appropriate. This is because, in some instances, identity may be experienced but not categorised by the individual. In the authors’ experience, it is not uncommon for gender-fluid people to say ‘today I feel more male’—this does not necessarily translate into a male identity on that day. In addition, some queer identities may be difficult to define as there are no clear terms available to capture that identity. In other cases, the terms can only be considered appropriate to use in specific circumstances or by specific people. When the complex nature of both gender identity and sexuality is considered alongside the evolving nature of both language and individual identity, assuming gender or sexuality exists along continuums can lead to oversimplification. As such, rejecting dualisms requires researchers to move from categorical classifications to considerations of evolving spaces. Negotiating how to understand an individual’s identity is, as such, about negotiating the evolving nature of that identity, both within the social space and the individual’s personal journey. Drawing from an earlier example, an individual’s personal journey might move from identifying as a straight man to a gay man through bisexuality, then to a realisation that the continuum of gender does not adequately express their sexuality as a pansexual person. Relatedly, the category of ‘asexual’ includes individuals who are sex-negative (see sex as

74  Handbook of sensitive research in the social sciences unpalatable), sex-neutral (indifferent to sexual activity), and sex-positive (see sex as a healthy part of life but do not experience sexual attraction). Therefore, it cannot be assumed that someone who identifies as asexual is automatically repulsed by the notion of sexual activity. Researchers recognising the complex nature of LGBTQ+ identities must consider the salience of the different elements of identity to determine the extent to which their research needs to explore these spaces. This consideration should extend beyond how data is collected (such as categories used on a questionnaire) to include how the research is analysed (such as how and why groups are aggregated) and interpreted (is it appropriate to compare just the dominant groups—male/female, homosexual/heterosexual).

CONCLUSION AND FUTURE DIRECTIONS The considerations presented herein are by no means exhaustive and have been designed to give researchers a framework with which to approach LGBTQ+ research, as well as more general population research that will include LGBTQ+ participants. These considerations may be applied at all stages of the research project—for instance, the use of contemporary language (Consideration 3) is relevant to the design of screeners to ensure the right people are included, as well as to the design of questions and the analysis of data to ensure respect for participants. It is acknowledged that these considerations, too, are likely to evolve as we gain a deeper understanding of gender and sexual orientation. However, we hope that providing these considerations will help researchers uncover their own unconscious biases and facilitate greater sensitivity throughout the research process. Moving forward, researchers need to discard the notion that participants conform to a majority, or typical, norm and embrace the idea that, unless specifically excluded as part of the selection criteria, their research sample will contain LGBTQ+ participants. Consequently, researchers need to consciously consider how they exert power in the research process through the design and conduct of a project so they can create an environment where all participants feel safe to participate. This approach will help create knowledge that is not premised on or interpreted based on the normativity of heterosexuality. Instead, by consciously discarding the normative lens, more inclusive understandings and interpretations will emerge. Grounding knowledge that is inclusive of an unfiltered expression of LGBTQ+ experiences can facilitate the development of policies and practices that are best suited to support equality and well-being for queer people. Finally, while the considerations advanced are underpinned by queer theory, future scholars may contribute to this conversation from an intersectional lens, considering how disadvantage is multiplied based on one’s identities, drawing implications for research practice. Relatedly, scholars may also take a post-colonial perspective, examining queer identities beyond those situated in Westernised contexts.

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‘Majority doesn’t exist’: a critical perspective on research with LGBTQ+ people  75 Burton, N. (2023). When homosexuality stopped being a mental disorder. Psychology Today, accessed 21 September 2024 at https://www​.psychologytoday​.com​/au​/ blog​/ hide​-and​-seek​/201509​/when​ -homosexuality​-stopped​-being​-a​-mental​-disorder. Coffin, J., Banister, E., & Goatman, A. (2016). Revisiting the ghetto: How the meanings of gay districts are shaped by the meanings of the city. ACR North American Advances, 44, 290–295. Consul, N., Strax, R., DeBenedectis, C. M., & Kagetsu, N. J. (2021). Mitigating unconscious bias in recruitment and hiring. Journal of the American College of Radiology, 18(6), 769–773. Funk, M. (2019). The book of pride: LGBTQ heroes who changed the world. HarperOne. Ghaziani, A. & Brim, M. (2019). Imagining queer methods. New York: New York University Press. Giroux, H. (1983). Critical Theory and Educational Practice. ESA 841, Theory and Practice in Educational Administration. ERIC. Goel, I. (2016). Hijra communities of Delhi. Sexualities, 19(5–6), 535–546. Human Dignity Trust. (2023). Map of Countries that Criminalise LGBT People, accessed 21 September 2024 at https://www​.humandignitytrust​.org​/ lgbt​-the​-law​/map​-of​-criminalisation/. Jaspal, R. & Breakwell, G. M. (2022). Identity resilience, social support and internalised homonegativity in gay men. Psychology & Sexuality, 13(5), 1270–1287. Knee, E. & Anderson, A. R. (2021). Queer politics, the gay bar, and hapless victimhood during COVID19: A brief response to Burns (2021). Queerness as/and political attunement. Leisure Sciences, 46(2), 143–149. LaFont, S. (2007). Decolonising sexuality. In H. Melber (ed.), Transitions in Namibia: Which changes for whom (pp.245–260). Stockholm: Nordiska Afrikainstitutet. Lewis, C. (2023). A wolf in sheep’s clothing: A critical view of the post-gay in an Australian context. In D. Bridges, C. Lewis, E. Wulff, C. Litchfield, & L. Bamberry (eds) Gender, Feminist and Queer Studies (pp.191–202). Routledge. Lewis, C., Chandra, S., & Markwell, K. (2023). Exploring queer people of colour’s perceptions of pride in Sydney. Tourism Geographies, 26(3), 520–539. Lewis, C., Mehmet, M., & McLaren, S. (2023). ‘A lot of gay energy in the city’: An identity-based exploration of leisure travel to domestic cities for rural queer people in Australia. Journal of Hospitality and Tourism Management, 54, 22–31. Lewis, C., Mehmet, M., Quinton, S., & Reynolds, N. (2023). Methodologies for researching marginalised and/or potentially vulnerable groups. International Journal of Market Research, 65(2-3), 147–154. Lewis, C. & Reynolds, N. (2021). Considerations for conducting sensitive research with the LGBTQIA+ communities. International Journal of Market Research, 63(5), 544–551. https://doi​.org​/10​.1177​ /14707853211030488. Malhotra, N. K. (2015). Essentials of marketing research: A hands-on orientation. Essex: Pearson. McLean, N. (2019). (Re) considering the Rainbow. International Journal of Critical Diversity Studies, 2(1), 24–40. Nadal, K. L. (2019). A decade of microaggression research and LGBTQ communities: An introduction to the special issue. Journal of Homosexuality, 66(10), 1309–1316. Nadal, K. L., Rivera, D. P., & Corpus, M. J. (2010). Sexual orientation and transgender microaggressions: Implications for mental health and counseling. In D. W. Sue (ed.), Microaggressions and marginality: Manifestation, dynamics, and impact (pp.217–240). John Wiley & Sons, Inc. National Health and Medical Research Council. (2007 (updated 2018)). National Statement on Ethical Conduct in Human Research, accessed 21 September 2024 at https://www​.nhmrc​.gov​.au​/about​-us​/ publications​/national​-statement​-ethical​-conduct​-human​-research​-2007​-updated​-2018​# toc_ ​_111. Ong, F., Vorobjovas-Pinta, O., & Lewis, C. (2020). LGBTIQ+ identities in tourism and leisure research: a systematic qualitative literature review. Journal of Sustainable Tourism, 30(7), 1476–1499. Pachankis, J. E. & Bränström, R. (2019). How many sexual minorities are hidden? Projecting the size of the global closet with implications for policy and public health. PloS one, 14(6), e0218084. https:// doi​.org​/10​.1371​/journal​.pone​.0218084. Perales, F. & Campbell, A. (2019). How many Australians are not heterosexual? It depends on who, what and when you ask. The Conversation, accessed 21 September 2024 at https://theconversation​.com​/ how​-many​-australians​-are​-not​-heterosexual​-it​-depends​-on​-who​-what​-and​-when​-you​-ask​-118256. Prayag, G., Lewis, C., & Pour, S. (2023). Travel in my life: queer identity, travel motivation, resilience, life-satisfaction and wellbeing. Current Issues in Tourism, 27(2), 323–340.

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6. Exploring death, dying, and bereavement: characteristics and challenges of a sensitive field of research Ekkehard Coenen and Matthias Meitzler

INTRODUCTION Dying, death and mourning have always been marginalised topics in the social sciences.1 Within this already marginalised field of research, contributions explicitly dedicated to a methodological—and, in particular, a sensitive—approach are even rarer. However, while socalled death studies2 have gradually gained momentum in recent years and are now dedicated to numerous well-known and novel fields, there is still a lack of detailed analysis of the unique features of the research process in this discipline. What are the characteristics that define endof-life research? In this chapter, we start at this point and focus on the unique characteristics of qualitative death studies. To this end, the second section discusses qualitative death studies’ historical development and status quo. In doing so, we try to make it clear that although social science research on the end of life has been opened up to qualitative methods since the 1960s, the question arises more often than ever about what holds together this sensitive field of research, also concerning the characteristic features of the research process. The third section then discusses six basic assumptions which, in our opinion, unite the extremely heterogeneous research areas of qualitative death studies. Specifically, these are the epistemological boundaries, the (extra-)everyday nature of the research object, the difficulty of accessing the field, the (implicit) norms and piety requirements, the particular relevance of research ethics and the emphasis on the subjectivity and emotionality of the researchers. An inherent characteristic of all, but especially the last two points, which is also at the centre of this article, concerns the particular sensitivity of the object of investigation (Dickson-Swift et al., 2007). The confrontation with dying, death, and mourners often represents a significant challenge for those affected and, therefore, also for the researchers, which requires an empathetic approach. The main concern here is to do justice to the emotional needs and reactions of the research participants, aiming to minimise or even avoid potential stressors (see also Chapter 35 in this volume). Finally, the fourth section addresses the implications of this for methodological reflection within qualitative death studies.

BEGINNINGS AND STATUS QUO OF DEATH STUDIES For a long time, social scientists paid little attention to death, dying and bereavement. Although death is an elementary phenomenon of social coexistence, togetherness, and opposition, which cannot be understood in isolation from interpretations, negotiation processes, and normative 77

78  Handbook of sensitive research in the social sciences settings and thus inherently touches on some fundamental questions of the social sciences, the widely propagated thesis of death denial (see Becker, 1973) seemed to apply mainly to the social sciences’ observation of society—while the primary responsibility was generously entrusted to other disciplines (such as philosophy, theology, law, biology, medicine, and so on) rather than to the social sciences. It was not until the middle of the twentieth century that an increase in publication density could be observed, and research on death, dying and bereavement developed into an independent field. In general, the second half of the century saw an increased academic focus on these topics—which, incidentally, can be seen as a symptom of a change in how society views death. Neil Small (2001, pp.21–24) distinguishes between five phases: while the field of research was opened up from the 1940s onwards, the 1960s saw the emergence of informal networks and disciplinary advances. These structures were formalised from the 1970s onwards. In the 1980s, there was an expansion of death-related research. Finally, from the 1990s onwards, there was a stronger focus on research concerning the ‘revival of death’ (Walter, 1994) and the concept of ‘continuing bonds’ (Klass et al., 1996). However, this development broadly only applies to the English-speaking world. In other countries, such as Germany, this process was much slower. While most texts initially remained at a theoretical-abstract level and empirical works were dominated by those with a quantitative orientation, an increase in qualitative research in this subject area has been apparent for some time. This applies particularly to the Anglo-Saxon academic world, where qualitative death research was initiated in the 1960s. The research activities of Barney G. Glaser and Anselm L. Strauss (1965, 1968) in US hospitals should be mentioned first and foremost—and are exemplary for later work. They proved groundbreaking for qualitative sociology on death, dying and bereavement and were a reference point for developing grounded theory methodology (Glaser & Strauss, 1967). The diversity of empirical research topics in the tension between death and society is due not least to societal transformation processes (such as secularisation, individualisation, pluralisation, medicalisation, and the associated demographic changes), which give rise to more or less new phenomena and discourses. Corresponding developments pose significant challenges for society and science in general and contribute to the empiricisation, as mentioned above, of death studies. At the very least, it is probably no coincidence that death studies gained momentum when they began to discover their areas of phenomena and field approaches. This, in turn, is accompanied by various methodological issues—including access to and behaviour in the field, the expectations of normality there, the collection and evaluation of data under methodologically controlled conditions, ethical considerations, and the like. Despite the growing relevance of qualitative methods within death studies, on the one hand, only a few comprehensive concepts have been developed on the theory side that can be applied to different social science questions and phenomena. On the other hand, there has been a lack of in-depth reflection on the research process’s characteristics, challenges, and potential in this sensitive field, which all death-related subjects of investigation have in common. In the individual works, the methods used are presented and embedded in methodological discussions, sometimes more and sometimes less intensively. However, this is always only done against the background of the specific object of investigation and often without a look at other similar research projects. As a result, there is now not only a loose juxtaposition of independent methodological analyses of death, dying and bereavement. The individual fields are also highly heterogeneous in their internal structure and only insufficiently linked. There are no

Exploring death, dying, and bereavement  79 interdisciplinary reflections on the death-related research process. We want to take this desideratum as the starting point for our following considerations.

BASIC ASSUMPTIONS OF QUALITATIVE RESEARCH ON THE END OF LIFE Our aim is not to conceive an all-encompassing universal methodology for death studies. After all, death-related research involves a conglomerate of multiple approaches, questions, and field realities that are difficult to subsume under a single perspective. Instead, we aim to work out and discuss some of the basic assumptions of qualitative death studies. Specifically, these are the epistemological limits, the (extra-)everyday nature of the research object, the difficulty of accessing the field, the (implicit) norms and piety requirements, the particular relevance of research ethics and the emphasised significance of researcher subjectivity and emotionality. Epistemological Boundaries The boundary separating life from non-life, the meaning of mourning, and the starting point of dying are not always clearly defined and vary historically and culturally (Charmaz, 1980; Doka, 2008). Death, dying, and bereavement are, thus, social products. However, the epistemological boundaries of qualitative death studies are now—and above all due to the socially constructed nature of death, dying and bereavement—to be equated with the lifeworld boundaries of the researchers. As people who have not (yet) died, they do not know what it means physically to die; as long as they have not taken anyone’s life, they do not know what it feels like to kill; as living people, they do not know what it is like to be dead; as individuals who have never lost a significant other, they can only develop a vague understanding of how such a loss is experienced due to the differing degrees of emotional impact. The boundaries of knowledge also extend along those institutionalised areas in which special death-related knowledge has developed. Laypeople cannot know what it is like to work as professional death workers—for example, clinical pathologists, end-of-life caregivers, or thanatopractitioners.3 The methods used must be critically reflected upon. What possibilities do interviews, participant observation, image, video, or artefact analyses, for example, offer for analysing the sensitive threshold situations of dying, death, and mourning? Indeed, there are (life-worldanalytical) ethnographies where researchers intentionally enter specific death-related professional contexts and seek to approach the research subjects’ worlds of meaning (Bernard, 2009; Coenen, 2020, 2021; Knopke, 2020; Pearce, 2019). There are also autoethnographies in which, for example, the researchers themselves are existentially (and more or less ‘accidentally’) affected by grief and the death of other people (Armstrong-Coster, 2005; Brennan, 2017; Ellis, 1993, 1995, 1996, 2003; Pierburg et al., 2023; Thornton & Letherby, 2009; Timmermans, 1994). In such cases, the subject under investigation becomes essential to the researchers’ lifeworld. They reflect on their existential involvement and the associated experiences, feelings, and emotions to make differentiated statements about their experience in a death-related context. The logic of the field in question is thus explored through a reflexive approach to one’s own experiences. However, these methods and methodologies also reach their limits when making statements about death.

80  Handbook of sensitive research in the social sciences At first glance, death researchers are confronted with an object of research that gives their sub-discipline its name, but which consistently eludes them as a state of being. They fail at the final boundary drawn by death. In this respect, their actual areas of investigation are those fields of action in which death is ‘a problem of the living’ (Elias, 2001, p.3). On closer inspection, it becomes clear that researchers do not investigate death but how it is dealt with. Their research interest is focused on how death, dying, and bereavement are dealt with communicatively and which patterns of interpretation, references to meaning, and expectations of normality exist within this sensitive field of research. The Ordinariness and Extra-ordinariness of the Object of Research Those who conduct empirical research on death-related topics are dealing with areas that are both extraordinary and ordinary at the same time: as unusual as some fields of action (such as assisted dying, autopsies, or funerals) may seem to ‘outsiders’, and as much as the corresponding processes usually remain hidden from their view, they are just as commonplace for those professionals who regularly come into contact with them. This alone shows that the ambivalence of everyday remoteness and organisational routine is not rooted in the death-related object itself but simply in the point of view of the individual observers and their different approaches. Qualitative researchers who have the first opportunity to gain (ethnographic) insights into such practices, which are often located on the social backstage (behind the closed doors of an organisation, for example), usually do so without any insider knowledge of the field that has become commonplace. Instead, the aim is to familiarise themselves with the field’s meanings, routines, and normalities through (participant) observation and to allow themselves to be productively irritated. As newcomers to the field, they will likely come across things that surprise, astonish, or disturb them because they form a sometimes more and sometimes less clear contrast to their familiar everyday reality. It, therefore, makes sense to describe the research sojourn as a temporary ‘leap’ into a sub-province of meaning far removed from everyday life in the sense of Schütz (1962). Sub-provinces of meaning are characterised by the fact that, on the one hand, they are still connected to the everyday world—institutional validity such as language still exists—but, on the other hand, they have their own rules and definitions of meaning. It is not only the field and its actors that have a morbid image but also the social scientists who research it, that is who voluntarily expose themselves to such situations. The fact that this is an unusual step may be seen by death researchers in the (often emotional) reactions of their social environment, against which the latest field knowledge is presented. However, researchers are not always wholly unfamiliar with their object of study before entering the field. For example, they already have an everyday knowledge of mortality (Benkel & Meitzler, 2021). Even if, as stated above, this is abstract knowledge ‘from afar,’ no one can escape the socialised prospect of their own and others’ physical futures. In contrast to research areas that, due to their particular characteristics, presumably have no points of contact with the researchers’ non-scientific lives, it is almost impossible not to have an attitude towards the end of life due to the existential concern mentioned above (Meitzler, 2019, p.121). In most cases, it can even be assumed that such a reference is not merely based on abstract intellectual discussions but also concrete experiences with the dying and death of a loved one. In this respect, academics are not entering the field and viewing it as a tabula rasa.

Exploring death, dying, and bereavement  81 The recent developments in the hospice and palliative care context should be mentioned (Carr & Luth, 2019). Although—or rather precisely because—people still predominantly die in hospitals and nursing homes, and the hospice movement continues to encounter numerous infrastructural and practical challenges (Livne, 2021), concepts of outpatient palliative care are being pursued in an attempt to fulfil the frequently expressed wish to be able to die at home (Rosenberg, 2011). Against this backdrop, the situation still lamented by Elias (2001), according to which the living in modern society take too little care of the dying, requires a relativising correction (Meitzler, 2021). Problems of Field Access What are the particularities of field access when researching in the sensitive context of death, dying and bereavement? What challenges, barriers, and potentials arise? The answers to these questions can already provide important information about the nature of the field (Frake, 1980). However, it is sensible to differentiate between empirical areas to answer these questions. Specific sensitivity to the particular case, the research question, and the intended data generation methods is required. Nevertheless, let us look for commonalities between all the sub-fields. We can again conclude, as Elias (2001, p.23) does, that the processes in these areas primarily occur ‘behind the scenes of social life.’ Unlike in earlier societies, where in some cases up until the nineteenth century, when death was much more public and, therefore, more visible, and the treatment of dying and dead bodies was much more the responsibility of the family, nowadays such processes take place mainly behind the scenes. This is primarily because these are professional activities under conditions of institutional compartmentalisation but also because the corresponding contexts are coded as private and intimate. Initially, there may be more to suggest that social researchers interested in a particular topic will always be welcomed with open arms when seeking empirical insights. To enter the targeted field, it is often necessary to legitimise one’s presence. This significantly differs from settings characterised by publicity, continuous accessibility, and visibility. The mere articulation of a (social) scientific interest in knowledge is not always enough to be ‘let in’ to a field relevant to death research. Researchers must prove themselves and may need a cover story to gain access—knowing fully that they may not see everything they want. When it comes to death, dying and bereavement in particular, however, it makes sense to assume a challenging approach to the field, given the assumed intimacy of the subject matter. How high the barriers to entry ultimately turn out to be and how much this depends on the legitimisation of the researcher’s presence depends on the specific object of investigation and other parameters. For example, anyone interested in attributions of meaning in the cemetery, or in the representation of specific death-related topics in media products, who wants to interview practitioners in their office about their professional experiences, or who intends to analyse publicly accessible artefacts such as obituaries, will have fewer hurdles to overcome in this respect than when observing processes in the back rooms of funeral homes, crematoria, or autopsy rooms. On the other hand, anyone wishing to videographically record events in a funeral café (under non-obscured conditions) will probably have to reckon with greater resistance than in the case of planned oral interviews at the same location. There are good reasons why there is no textbook-like knowledge on how best to behave when entering the field. The research areas, their mechanisms of inclusion and exclusion,

82  Handbook of sensitive research in the social sciences the motivations for participation, expectations, attitudes, and the respective field-immanent understandings of (social) scientific practice differ too much. Against this background, the ‘access negotiations’ while establishing contact with heads of forensic medicine institutes can sometimes differ significantly from interactions with private individuals, bereavement and death counsellors, or funeral directors. This applies not least to the degree of formalisation, which depends not only on the social position of the other person but also on their age and the specific relationship with the researcher. In some cases, there is no way around ‘cold’ field access by formal means, and the presentation of certain academic credits is required. In other cases, researchers can fall back on an existing network of (informal) contacts who do not need to be convinced of the seriousness of the research project. The explicit, sometimes casual presentation of existing field knowledge and corresponding expertise can also help. Furthermore, researchers are not always newcomers to the field at the start of their research. As mentioned above, auto-ethnographic studies in the context of the end of life can be motivated by past experiences in the private environment, such as the diagnosis and life with a serious illness, or death or bereavement (see Armstrong-Coster, 2005; Brennan, 2017; Thornton & Letherby, 2009). Here, entry into the field does not follow the initial research interest; rather, scientific reflection follows an existential concern in the lifeworld. Research that has already been initiated by previous (part-time or voluntary) involvement in the field should also be considered. A frequent example of this constellation is ethnographic research in the hospice context. (Implicit) Norms and Piety Requirements No area of social action is free from normative settings. The task of qualitative researchers is to identify a field’s explicit and implicit rules and reflect on their conditions of origin and effects. However, this can make the investigation challenging: to what extent is the ideal-typical value-judgment-free research (Weber, 2011) compatible with the field’s norms, and where might conflicts lurk? How can researchers respect norms without merely doubling them in the sense of going normative, but instead analysing them with the necessary critical distance? In principle, nothing else applies to the research context of death, dying and bereavement. However, the normative charge in this area is critical because normativity is also negotiated here as piety. The fact that there are corresponding expectations of piety seems to be so selfevident that they usually remain implicit—as if no further explanation is needed as to what lies behind this term. Therefore, understanding reverent action seems unproblematic until one is asked for a definition. In other words, field actors do not need to be explicitly taught what to do or to refrain from behaving irreverently. Piety norms characterise the field—and, thus, also the everyday actions of the actors involved, which do not merely follow pragmatic directives. Piety, therefore, also functions as a quality feature and value-orientated basis for professional funeral behaviour. Qualitative death researchers are also confronted with such piety requirements, unlike researchers in other fields. They are often assumed to have a corresponding understanding due to pre-scientific socialisation. There is no need to spell out to them in advance that, for example, no photos should be taken of the bereaved in a funeral parlour, that dying people should not be asked questions about their current state of mind, and that dead bodies should not be touched roughly. In ethnomethodological terms, an action-orientated everyday methodology

Exploring death, dying, and bereavement  83 can be used in such situations (Garfinkel, 1967). If this is made the object of investigation, essential insights into the field and its logic of action can already be gained. However, the fact that the understanding of piety remains implicit poses a particular problem for researchers. After all, the relationships are not always as clear as in the mentioned examples. Where does social science curiosity come up against the boundaries of piety established by the field? How much ethnographic nosing around is legitimate, and where is tactful restraint required so as not to jeopardise the trust placed in the field actors? What can be discussed in qualitative interviews with the bereaved, for example, and what is better left out in the interest of discretion? Which method is appropriate in which context, and who ultimately decides? Finally, what role do expectations play here—in the sense of researchers following the norms of piety they assign to the field in advance? In any case, researchers are also subject to the potential risk of being labelled as irreverent due to their actions (from field access to data collection to the publication of results), despite all ‘reverence intuition’. Nevertheless, against this backdrop, what is meant by reverent research? Considerations such as these already indicate that research ethics are also of greater relevance in the qualitative study of death, dying and bereavement. Special Features of Research Ethics It is not uncommon for talk about death, dying and bereavement to evoke consternation, and it is part of the inner logic of this field that ethical and moral conventions are not only present as in other areas of research but are even emphasised in this case. For this reason, Paul C. Rosenblatt (1995, p.154) pointed out that it is inherent in grief research to ask oneself whether one is doing the ‘right thing. This partly uncertain, partly self-critical attitude can also be observed in research into death and death-related phenomena, be it hospices, palliative care units, pathologies, cemeteries, and so on. These research fields are characterised by numerous ethical and moral dilemmas in practice (Coupal, 2005; Earle & Bartholomew, 2009). As a result, the usual research ethical consequences such as anonymisation, the concession of confidentiality, informed consent, integrity, data protection, and protection against harm (Israel & Hay, 2006) are brought to the fore in the death-related context (see also Chapter 18). As mentioned regarding expectations of piety, many qualitative death researchers are in more or less intensive contact with particularly vulnerable people (Liamputtong, 2007; see also Chapter 1). At least those who have lost a significant other, who are dying, or who are regularly confronted with ‘natural’ and violent death are exposed to high emotional pressure and are susceptible to psychological, social and—especially in the case of the dying— sometimes also physical harm. This makes it all the more important for researchers to reflect on their proximity to the field and their actions in it, as well as to implement the three relevant research ethics requirements: to minimise harm in the field, to respect the autonomy of the field actors, and to protect their privacy (Hammersley & Traianou, 2012). Furthermore, regarding a (research) ethical prognosis, it is essential to assess the potential risks for researchers and research participants and to take precautions in case of a possible crisis among the participants as part of (research) ethical prevention. This ultimately leads to an outstanding debate about what measures death researchers (can) take to minimise the risk of harm in the field and its consequences. In essence, this raises the question of how the central principles of research ethics can be adequately applied to research on death, dying and bereavement.

84  Handbook of sensitive research in the social sciences Therefore, regarding sensitive research, the aim is to integrate ethical considerations into the methodological procedure. This approach already extends to the recruitment of study participants (see also Chapter 18). A concrete example from our research will illustrate this: if, for example, the research interest is to talk to people about their experiences of loss and grief, a particularly cautious approach is required due to the vulnerability that can be attributed to this area and those affected (Rosenblatt, 1995). Instead of ‘persuading’ target individuals ad hoc (such as a surprise phone call or by waiting at the cemetery gate, at the grave, or another emotionally charged or perceived as intimate location) to participate in the study and jeopardising their autonomy with such almost ‘ambush-like’ cold acquisition, a somewhat more defensive, less intrusive mode of contact would be advisable. This does not put pressure on those affected but gives them the necessary freedom to take their time to consider the intentions of the study and decide at their own pace whether they are willing to participate (Butler et al., 2019). This could be achieved, for example, through postal/electronic delivery or by publishing a text that explains the research purpose and the opportunities for participation in language that is as easy to understand as possible. In turn, the interview situation must be characterised by respect and empathy, and the research participants should be given as much freedom as possible. Sensitive relationshipbuilding, which begins with the initial contact and the creation of a trusting interview atmosphere in which the participants feel as comfortable as possible, are therefore essential prerequisites ‘that will allow the researcher access to that person’s story’ (Dickson-Swift et al., 2007, p.331; see also Booth & Booth, 1994). It is, therefore, all the more important that the interview setting appears as minimally ‘artificial’ as possible and is perceived as a relaxed conversation at eye level (Dickson-Swift et al., 2007, p.335). A low level of standardisation, along with a similarly low claim to authority by the interviewer, who has much more to do than ‘ask questions’, addresses this requirement into account. Of utmost importance, in addition to providing a sufficiently transparent explanation of the goals and procedures of the study and obtaining informed consent from the interview partners, is their assurance that they decide alone on the duration, pace, and content of the interview. This includes, among other things, that they do not need to justify omissions (such as particularly unpleasant aspects), the desire to end the interview, or temporary emotional outbursts. In turn, researchers should always be aware that this is a reactive procedure—in contrast to analysing certain material artefacts in the cemetery or other places (Benkel & Meitzler, 2019). This means that the study participants, despite their trust and every effort by the interviewers to create a relaxed interview atmosphere, are already influenced by the study itself and how it is conducted. Both their expectations of the interview and their communication behaviour during the interview may change as a result. In any case, it is not unlikely that interviewees who deal with their loss in the context of qualitative, semi-structured interviews will become (re)aware of one or more painful memories, which in turn can have a considerable influence on their mood and thus also on the further course of the interview. Ashleigh E. Butler, Beverley Copnell, and Helen Hall (2019, p.226) also point out in this context that those affected individuals ‘may experience secondary distress or trauma when they are approached to participate in a research study.’ In principle, ensuring adequate and situationally appropriate treatment of participants is paramount, especially in the face of potential emotional burdens (Kavanaugh & Ayres, 1998) that could arise in the context of confronting death-related topics—even if, according to the relevant specialist literature, they are not believed to be higher than in everyday life situations (Corbin & Morse, 2003).

Exploring death, dying, and bereavement  85 In addition to establishing contact and the interview situation, ethical principles also pervade the downstream dissemination of research results. The mode in which individual case vignettes or statements made by participants or material made available to the specialised public must, therefore, be considered with the utmost care, particularly concerning the protection of identity and privacy. The adequate anonymisation of specific narratives and quotes is one of the research ethics standards that must be observed, regardless of the subject of the study. However, this needs to be emphasised even more when, as in the present case, vulnerable phases of life and sensitive content concerning the loss of a loved one are involved. However, sensitive research does not only refer to the ethically responsible treatment of research participants. It also includes considerations regarding the appropriate presentation of research findings to (potential) recipients (see also Chapter 8). In the context of the end of life, this dimension contains, among other things, the critical examination of explicit content in both textual and visual form (Benkel & Meitzler, 2023; Coenen, 2021). This primarily involves weighing up the most authentic or detailed depiction of social reality possible and considering any (negative) emotional effects of the material in question (such as descriptions of particularly tragic circumstances of loss, images of dead people and the like). However, this is linked to the fundamental problem that one can never precisely predict the ‘attribution career’ of this or that content and that different recipients react differently to the same content depending on their specific lifeworld backgrounds. What evokes tremendous discomfort in some people—possibly triggering deep-seated fears or even traumatic experiences, or at any rate leading to a short-term or even long-lasting impairment of psycho-emotional wellbeing—may be assessed quite soberly by others as merely existing field reality. Even if they cannot resolve this discrepancy, researchers need to reflect in advance that the field, which has become more or less familiar to them, will soon hold more or less serious potential for irritation for others, not least due to the above-mentioned extraordinary nature. Contrary to a widespread assumption, however, none of this implies that qualitative studies on the end of life are, per se, depressing and upsetting for the research subjects (and, as outlined above, for the research recipients). For example, Margo J. Milne and Cathy E. Lloyd (2009) emphasised that talking about loss experiences can also positively affect the research subjects. Meanwhile, Alicia S. Cook and Geri Bosley (1995) pointed out that the research process can sometimes take on therapeutic traits (Sque, 2000). We want to add that this is expressed, for example, in productive reflection processes, helpful self-knowledge, newly opened horizons, or simply in the welcome opportunity to ‘get things off one’s chest’ in a protected communication space. This was also observed in the course of specially conducted interviews on the topic of grief (Meitzler, 2019). Some interviewees expressed gratitude for being able to talk about their situation with an attentive and patient listener without encountering a lack of understanding, rejection, judgement, pressure to justify themselves and the like. Although the improvement in the interviewees’ state of mind can undoubtedly be categorised as a positive accompanying effect, the qualitative interview follows different premises than the psychotherapeutic or counselling setting. Nevertheless, some parallels certainly stand out about the open narrative orientation, the joint relationship building, the discussion of intimate matters, the supportive listening by the interviewer and so on. Against this background, the attitude that all contact persons must be anonymised without exception should be questioned under certain circumstances. For example, Jenny Hockey (2007, p.443) described how using real names instead of pseudonyms could positively affect the research field. The deceased would, thus, be memorialised and their memory preserved.

86  Handbook of sensitive research in the social sciences In our research, too, some interviewees sometimes deliberately did not want to appear anonymously. They saw using their real name as an enhancement of their participation in the research and a guarantee of authenticity for the research results (Meitzler, 2019). This was particularly noticeable in interviews on supposedly taboo topics such as mourning or specific, sometimes controversial, burial practices, where some participants even exhibited a kind of political agenda that they wanted to spread through the conduit of science. Comprehensive ethical guidelines for thanatological research are needed. Although the ethics codes of some scientific associations offer a general framework for research ethics, they are, in part, too vague to be applied to the requirements of death and bereavement-related research. As a result, qualitative death researchers are currently faced with the challenge that although their field of investigation reveals enormous research ethical demands, there are hardly any concrete guidelines for action. In their research activities and their reflection on research ethics, they are more or less left to their own devices, which should not necessarily be interpreted as a dead end but can—in a positive sense—encourage researchers to engage in creative practice. Research ethical questions in the context of qualitative death studies are very closely linked to subjectivity and emotionality. In addition to the field actors and recipients of the research reports, this also applies particularly to the researchers themselves (Gazso & Bischoping, 2018; Haskell et al., 2002). This brings us to another aspect that requires special attention. Emphasising the Subjectivity and Emotionality of the Researchers In the few existing texts on the requirements of qualitative research in the field of death, dying, and bereavement, the subjectivity of the researchers and its influence on the entire research process was always placed at the centre of reflection (see Meitzler, 2019; Rowling, 1999; Visser, 2017; Woodthorpe, 2007, 2009). It was emphasised repeatedly that the researchers, during the research process, were consistently confronted with their relationship to death and the deceased, as well as to dying and the dying. Researchers are sometimes confronted with very stressful field experiences (Rowling, 2009), whether they build up relationships with the dying, are affected by the mourning behaviour of bereaved people or their experiences of loss (such as the death of children), or see the corpses of people who have either died a ‘natural’ death, through accidents or acts of violence, or are already well-decomposed. This is linked to numerous value attachments and existential problems, which are reflected—sometimes more and sometimes less clearly—in the data and the presentation of research results. How does one encounter corresponding fields (collecting and evaluating data, dealing with contact persons, perceiving information, and addressing questions to the field actors, oneself, and the material)? How one experiences the impressions gained and to what extent this influences the further procedure not only has to do with the academic socialisation of the researchers and their methodological competence but is also a result of previous lifeworld encounters with death. The experiences one looks back on in this regard, the cultural patterns one has internalised, the extent to which death has been thematised or tabooed, and whether shyness or curiosity dominates—all these factors play a role in the research. They may ultimately have led to the decision for or against entering the field. Conversely, the field experiences, in turn, affect the personal non-scientific world. For example, repeated contact with dead bodies

Exploring death, dying, and bereavement  87 can lead to a more open-minded approach and, thus, promote a (subjective) removal of taboos (Knopke, 2018). Conducting research in the field of the end of life means dealing not only with other people’s emotions and feelings but also with one’s own (see also Chapter 35). Consequently, as already mentioned, fears, prejudices, and aversions can lead to individual researchers not wanting to deal with specific death-related topics, thereby placing limits on their research. Not everyone feels able to observe what happens in (paediatric) hospices or palliative care units, look over the shoulders of forensic pathologists during autopsies, or conduct in-depth interviews with the bereaved. A fundamental aversion to death, that is, , one that extends far beyond the personal environment (again combined with diffuse or concrete fears), can prevent researchers from dealing with any topics relating to the end of life. At least here, the thesis of the denial of death, which can extend even into one’s discipline, proves to be true. Against this background, sensitive research, therefore, also means recognising the researchers’ dispositions as vulnerable in principle (Dickson-Swift et al., 2007; Liamputtong, 2007; see also Chapters 1 & 3), protecting them from any psychological stress (Butler et al., 2019; Johnson & Clarke, 2003) or, if necessary, dealing with the latter as part of a debriefing (Kitson et al., 1996). With this, not only the timing of data collection but all phases of the research process are intended. Butler et al. (2019, p.231) write: The emotional work of sensitive research [...] continues well into data analysis and reporting results when researchers are constantly inundated with highly distressing images, stories and reports. During transcription, the researcher must slowly re-live each interview moment to extract as much data as possible and create an accurate written account of the events. [...] This can be an extremely emotional task, in which researchers are required to repeatedly share in the distress and pain caused to participants in their study.

One example from our research is the joint evaluation of potentially emotionally stressful data material, particularly explicit as part of an interpretation group. If videos showing lethal violence or suicides are to be viewed and interpreted together with co-researchers, an agreement must be reached in advance. Other researchers should be made aware of the content and always have the opportunity to withdraw from an incriminating viewing. Unannounced, ‘surprise’ recordings of killings can cause lasting distress. If such incriminating data is regularly viewed, it is advisable to consider professional therapeutic supervision as an accompaniment to the research process. In the past, researchers’ emotions were sometimes seen as disruptive variables for empirical social research because they would threaten the scientific claim to objectivity. They could distort field observations and the resulting theorisation and even affect everyday practice beyond the boundaries of academia. For this reason, some authors have pointed out that the emotionality of researchers requires unique reflection and emotion management (Behar, 1996; Dunn, 1991; Rager, 2005). This also applies to a large extent to death research, in which researchers can all too easily have feelings (such as pity, disgust, anger, worry, and fear) that influence their attention during the research process and can also have a partly empowering and partly disturbing effect on their everyday life (Knopke, 2018). However, minimising such emotional burdens does not equate to preventing any emotional expression on the part of the researchers, and any irritations should not only be seen negatively; they can also become a medium for criticism or gain in understanding (Copp, 2008; Davies & Spencer, 2010; Kleinman & Copp, 1995; Woodthorpe, 2007). The subjectivity and

88  Handbook of sensitive research in the social sciences emotions of the researchers should not be dismissed as sources of interference that obscure the unclouded view of the essentials. Instead, they should be recognised and taken seriously as data to be reconsidered reflexively. From this, as Robert Fulton (1977, p.25) notes, arises the opportunity to ‘look deeply and afresh at our own beliefs and emotions as they relate to our own lives and our own deaths’.

CONCLUSION AND FUTURE DIRECTIONS As we have tried to demonstrate in the preceding discussions, qualitative research in the context of dying, death and bereavement is shaped by some basic assumptions essential to researchrelated methodological reflection. Although these assumptions are not unique to qualitative death studies, they are also relevant in other research fields. In their constellation, however, there are special requirements for the death-related research process that can be more than equated with those in different fields and present researchers with specific problems. Therefore, research on the end of life is a prerequisite as numerous obstacles to research practice must be overcome or at least considered by researchers. Death, dying, and bereavement are extremely sensitive fields of action, which, in extreme cases, can result in lasting harm to the people and groups being researched. At the same time, there can also be strong emotional stress on the part of the researchers and, if applicable, the recipients of the research. These hurdles can be countered with suitable methodological reflection and, above all, a sensitive approach that enables “death researcher[s]” (Borgstrom & Ellis, 2017, p.94) to approach their research subject profitably and, at the same time, take into account more recent social, methodological, and theoretical developments. Research into death, dying and bereavement requires a high degree of sensitivity. However, researchers are often left to their own devices when acquiring the necessary expertise and know-how. It would, therefore, be helpful if qualitative studies were used not only to produce and publish records of the analyses and research results but also practical research notes could be passed on to the scientific community, in which options for action may also describe failed procedures and worst-case events. Our explanations should have clarified that death studies, in particular, depend on such practical research reports and reflections and can benefit from them. With the basic assumptions outlined in this chapter, we would like to provide impulses for the further institutionalisation of qualitative death studies to explore its relationship to its fields of investigation and incorporate the corresponding insights into the research processes. However, this is not to suggest that there are specific ‘death-related methods’ that are of particular relevance for further research. Instead, we would like to emphasise that death studies have so far been characterised by pluralism and opportunism of methods, which will continue to be indispensable for context-sensitive analyses of the phenomena of death, dying, and bereavement in the future. Discussing the basic assumptions enables qualitative research on dying, death, and bereavement to benefit mutually from the respective approaches and research practices. It could represent a starting point for exploring the prerequisites and potentials of interdisciplinary research. Furthermore, research on the end of life could take account of a growing blurring of boundaries between field research and field practice in that researchers and research subjects irritate each other and nevertheless—or precisely because of this—learn from each other. It is

Exploring death, dying, and bereavement  89 necessary to consider how the research results can be communicated to the research subjects and how they can be profitably integrated into the research field. The significance of participatory research designs (Bergold & Thomas, 2012) in the scientific consideration of death, dying and bereavement should also be discussed. We also see our contribution as a plea for qualitative research on death, dying and bereavement to pay more attention to the theoretical references to empiricism and to search for appropriate methodological approaches, ensuring these are reflected upon with a view to their prerequisites. This is because the future potential of research on the end of life, in terms of productive further development, can only be realised if the researchers are concerned with their relationship to empiricism.

NOTES 1. The main features of this article were inspired by a text published in the journal Forum: Qualitative Social Research (Coenen & Meitzler, 2021). 2. Erica Borgstrom and Julie Ellis (2017, p.93) use the term “death studies” to mean “an umbrella term for research spanning all aspects of death, dying and bereavement, including end-of-life care”. 3. However, we are not implying, for example, that all dying people know what it means to die. Glaser and Strauss (1965) have shown that dying people are not always aware of their dying process. Moreover, it cannot be denied that the dying who learn of their illness cannot fully know what their dying process means. Nevertheless, existential involvement provides entirely different prerequisites for approaching the topics of death, dying and bereavement from a social science perspective. As long as researchers are not existentially engaged with their research subjects, they face unavoidable epistemological hurdles.

REFERENCES Armstrong-Coster, A. (2005). In morte media jubilate 2. A study of cancer-related pathographies. Mortality, 10(2), 97–112. Becker, E. (1973). The denial of death. New York: Free Press. Behar, R. (1996). The vulnerable observer. Anthropology that breaks your heart. Boston, MA: Beacon Press. Benkel, T. & Meitzler, M. (2019). Materiality and the body. Explorations at the end of life. Mortality, 24(2), 231–246. Benkel, T. & Meitzler, M. (eds) (2021). Wissenssoziologie des Todes. Beltz Juventa. Benkel, T. & Meitzler, M. (2023). Images that hurt. Visual challenges in qualitative research. Jahrbuch für Tod und Gesellschaft, 2, 92–132. Bergold, J. & Thomas, S. (eds) (2012). Partizipative qualitative Forschung. Forum: Qualitative Social Research, 13(1), art. 30. Bernard, J. (2009). Croquemort. Une anthropologie des émotions. Paris: Éditions Métailié. Booth, T. & Booth, W. (1994). The use of depth interviewing with vulnerable subjects. Social Science and Medicine, 39(3), 415–424. Borgstrom, E. & Ellis, J. (2017). Introduction: researching death, dying and bereavement. Mortality, 22(2), 93–104. Brennan, M. (2017). Christopher Hitchens, public dying and the cultural public sphere. In M. Brennan (ed.), Theorising the Popular (pp.61–88). Newcastle upon Tyne: Cambridge Scholars Publishing.

90  Handbook of sensitive research in the social sciences Butler, A. E., Copnell, B., & Hall, H. (2019). Researching people who are bereaved. Managing risks to participants and researchers. Nursing Ethics, 26(1), 224–234. Carr, D. & Luth, E. A. (2019). Well-being at the end of life. Annual Review of Sociology, 45, 515–534. Charmaz, K. (1980). The social reality of death. Addison-Wesley. Coenen, E. (2020). Zeitregime des Bestattens. Thanato-, kultur- und arbeitssoziologische Beobachtungen. Weinheim: Beltz Juventa. Coenen, E. (2021). “What has the field done to you?” Researching death, dying, and bereavement between closeness and distance. In: A. Thamann & K. Christodoulaki (eds), Beyond the veil. Reflexive studies of death and dying (pp.109–124). Berghahn. Coenen, E. & Meitzler, M. (2021). Researching the end of life. Reflections on qualitative sociology of death, dying, and bereavement. Forum: Qualitative Social Research, 22(2). https://doi​.org​/10​.17169​ /fqs​-22​.2​.3624. Cook, A. S. & Bosley, G. (1995). The experience of participating in bereavement research. Stressful or therapeutic? Death Studies, 19(2), 157–170. Copp, M. A. (2008). Emotions in qualitative research. In L. A. Given (ed.), The Sage Encyclopedia of qualitative research methods (pp.249–252). Sage. Corbin, J. & Morse, J. M. (2003). The unstructured interactive interview. Issues of reciprocity and risks when dealing with sensitive topics. Qualitative Inquiry, 9(3), 335–354. Coupal, L. (2005). Practitioner-research and the regulation of research ethics. The challenge of individual, organizational, and social interests. Forum: Qualitative Social Research, 6(1). https://doi​ .org​/10​.17169​/fqs​- 6​.1​.528. Davies, J. & Spencer, D. (eds) (2010). Emotions in the field. The psychology and anthropology of fieldwork experience. Redwood City, CA: Stanford University Press. Dickson-Swift, V., James, E. L., Kippen, S., & Liamputtong, P. (2007). Doing sensitive research. What challenges do qualitative researchers face? Qualitative Research, 7(3), 327–353. Doka, K. J. (2008). Disenfranchised grief in historical and cultural perspective. In M. S. Stroebe, R. O. Hansson, H. Schut & W. Stroebe (eds), Handbook of bereavement research and practice. Advances in theory and intervention (pp.223–240). American Psychological Association. Dunn, L. (1991). Research alert! Qualitative research may be hazardous to your health! Qualitative Health Research, 1(3), 388–392. Earle, S., Komaromy, C., & Bartholomew, C. (eds) (2009). Death and dying. A reader. Sage. Elias, N. (2001). Loneliness of the dying. Continuum. Ellis, C. (1993). “There are survivors.” Telling a story of sudden death. Sociological Quarterly, 34(4), 711–730. Ellis, C. (1995). Final negotiations. A story of love, loss and chronic illness. Philadelphia, PA: Temple University Press. Ellis, C. (1996). Maternal connections. In C. Ellis & A. P. Bochner (eds), Composing ethnography. Alternative forms of qualitative writing (pp.240–243). Walnut Creek, CA: Altamira Press. Ellis, C. (2003). Grave tending. With mom at the cemetery. Forum: Qualitative Social Research, 4(2). https://doi​.org​/10​.17169​/fqs​- 4​.2​.701. Frake, C. O. (1980). How to enter a Yakan house? In A. S. Dil (ed.), Language and cultural description. Essays by Charles O. Frake (pp.214–232). Stanford: Stanford University Press. Fulton, R. (1977). The sociology of death. Death Education, 1(1), 15–25. Garfinkel, H. (1967). Studies in Ethnomethodology. Saddle River, NJ: Prentice-Hall. Gazso, A. & Bischoping, K. (2018). Feminist reflections on the relation of emotions to ethics. A case study of two awkward interviewing moments. Forum: Qualitative Social Research, 19(3). http://dx​ .doi​.org​/10​.17169​/fqs​-19​.3​.3118. Glaser, B. G. & Strauss, A. L. (1965). Awareness of dying. Venice: Aldine. Glaser, B. G. & Strauss, A. L. (1967). The discovery of grounded theory. Strategies for qualitative research. Mill Valley, CA: Sociology Press. Glaser, B. G. & Strauss, A. L. (1968). Time for dying. Venice: Aldine. Hammersley, M. & Traianou, A. (2012). Ethics in qualitative research. Controversies and contexts. Sage. Haskell, J., Linds, W., & Ippolito, J. (2002). Opening spaces of possibility. The enactive as a qualitative research approach. Forum: Qualitative Social Research, 3(3). https://doi​.org​/10​.17169​/fqs​-3​.3​.827.

Exploring death, dying, and bereavement  91 Hockey, J. (2007). Closing in on death? Reflections on research and researchers in the field of death and dying. Health Sociology Review, 16(5), 436–446. Israel, M. & Hay, I. (eds) (2006). Research ethics for social scientists. Between ethical conduct and regulatory compliance. Sage. Johnson, B. & Clarke, J. M. (2003). Collecting sensitive data. The impact on researchers. Qualitative Health Research, 13(3), 421–434. Kavanaugh, K. & Ayres, L. (1998). “Not as bad as it could have been.” Assessing and mitigating harm during research interviews on sensitive topics. Research in Nursing & Health, 21(1), 91–97. Kitson, G. C., Clark, R. D., Rushforth, N. B., Brinich, P. M., Sudak, H. S., & Zyzanski, S. J. (1996). Research on difficult family topics. Helping new and experienced researchers cope with research on loss. Family Relations, 45(2), 183–188. Klass, D., Silverman, P. R., & Nickman, S. L. (1996). Continuing bonds. New understandings of grief. London: Routledge. Kleinman, S. & Copp, M. A. (1995). Emotions and fieldwork. Sage. Knopke, E. (2018). Touching the dead. Autoethnographical reflections about the researcher’s body in the field of death, dying, and bereavement. Death Studies, 42(10), 640–648. Knopke, E. (2020). The arranged mourning ambience. About the professional production of atmospheres at funeral services. Mortality, 25(4), 433–448. Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. London: Sage. Livne, R. (2021). Toward a sociology of finitude. Life, death, and the question of limits. Theory and Society, 50(6), 837–865. Meitzler, M. (2019). Keine Angst vor echten Tränen. Die Erforschung von Trauer als methodologische Herausforderung. In T. Benkel, M. Meitzler & D. Preuß (eds), Autonomie der Trauer. Zur Ambivalenz des sozialen Wandels (pp.75–125). Baden-Baden: Nomos. Meitzler, M. (2021). Norbert Elias und der Tod. Eine empirische Überprüfung. Springer VS. Milne, M. J. & Lloyd, C. E. (2009). Keeping the personal costs down. Minimising distress when researching sensitive issues. In S. Earle, C. Komaromy & C. Bartholomew (eds), Death and dying. A reader (pp.221–229). Sage. Pearce, C. (2019). The public and private management of grief. Recovering normal. Palgrave Macmillan. Pierburg, M., Benkel, T., Coenen, E., Meitzler, M., & Sitter, M. (2023). Autoethnography in the vicinity of death. Sociological work on and with challenging identification processes. Forum: Qualitative Social Research, 24(2). https://doi​.org​/10​.17169​/fqs​-24​.2​.4065. Rager, K. B. (2005). Self-care and the qualitative researcher. When collecting data can break your heart. Educational Researcher, 34(4), 23–27. Rosenberg, J. (2011). Whose business is dying? Death, the home and palliative care. Cultural Studies Review, 17(1), 15–30. Rosenblatt, P. C. (1995). Ethics of qualitative interviewing with grieving families. Death Studies, 19(2), 139–155. Rowling, L. (1999). Being in, being out, being with. Affect and the role of the qualitative researcher in loss and grief research. Mortality, 4(2), 167–181. Rowling, L. (2009). The role of the qualitative researcher in loss and grief research. In S. Earle, C. Komaromy & C. Bartholomew (eds), Death and dying. A reader (pp.230–236). Sage. Schütz, A. (1962). Symbol, reality and society. In M. Natanson (ed.), Collected papers, Vol. 1: The problem of social reality (pp.287–356). Nijhoff. Small, N. (2001). Theories of grief. A critical review. In J. Hockey, J. Katz & N. Small (eds), Grief, mourning and death ritual (pp.19–48). Open University Press. Sque, M. (2000). Researching the bereaved. An investigator’s experience. Nursing Ethics, 7(1), 23–34. Thornton, D. & Letherby, G. (2009). Experience of the loss of a husband/father. In S. Earle, C. Bartholomew & C. Komaromy (eds), Making sense of death, dying and bereavement. An anthology (pp.202–204). Sage. Timmermans, S. (1994). Dying of awareness. The theory of awareness contexts revisited. Sociology of Health and Illness, 76(3), 322–339. Visser, R. C. (2017). “Doing death.” Reflecting on the researcher’s subjectivity and emotions. Death Studies, 41(1), 6–13.

92  Handbook of sensitive research in the social sciences Walter, T. (1994). The revival of death. Routledge. Weber, M. (2011). “Objectivity” in social science and social policy. In E. A. Shils & H. A. Finch (eds), Max Weber. Methodology of social sciences. Routledge. Woodthorpe, K. (2007). My life after death. Connecting the field, the findings and the feelings. Anthropology Matters, 9(1), 1–11. Woodthorpe, K. (2009). Reflecting on death. The emotionality of the research encounter. Mortality, 14(1), 70–86.

7. Social street work: intervention method as a research method in sensitive research? Tiago A. Lobo-Dos-Santos

INTRODUCTION In the special issue of the International Journal of Social Research Methodology, ‘Unpacking Sensitive Research’, Mallon, Borgstrom and Murphy (2021, p.518) elegantly synthesised the nature of sensitive research in the previous literature. When considering ‘sensitive research’, sensitivity is often thought of in terms of two key elements: firstly, the inherent sensitive or taboo qualities of the research topic itself and secondly the methodological and practical means of sensitively addressing such ‘sensitive’ issues.

Most social street workers are not researchers and have never carried out research, at least by the standards of mainstream social sciences. Yet, in reading this quote and reflecting on these two key elements, I believe any social street worker or outreach worker will rapidly feel ‘at home with this topic—some sort of familiarity in coming to terms with these elements. Based on my direct experiences as a street-based youth worker, as well as the lessons I learnt from years of collaborating with senior social street workers, I could immediately tie the nature of SSW with the key features of sensitive research. In fact, the strongest reason for an intervention methodology such as SSW to operate and be sustained is usually due to both the taboo or stigma ingrained in the social issue to be addressed (such as addiction, prostitution, sexual education racism) and the need for a special, sensitive approach to those issues that can circumvent borders, bias, violence, or inefficacy of traditional intervention methods, projects, or practices. It is a no-brainer for any social street worker that SSW is a flexible social intervention tool to be used in sensitive contexts for sensitive topics. Even beyond this, SSW is a ‘sensitive’ tool per se. The term Social Street Work (SSW) is used in this chapter as an umbrella term for a methodology that encompasses various social intervention models, such as ‘outreach’, ‘detached work’, ‘street-based youth work’, ‘street education’, ‘street work,’ and ‘natural setting’ approaches. For this reason, taking SSW as a subject is painstaking due to its multiple labels and the unclear conceptualisations attached to interchangeable terminology. Without delving deep into the problems associated with defining SSW (see Andersson, 2013), I will present existing conceptualisations: first, the ones advanced by social street workers as a professional group; second, those extracted from recently published studies on SSW. After laying the basic conceptual foundations, I seek to contribute to both the SSW and the research methods literatures by extending SSW to a perspective not explicitly taken in mainstream accounts of SSW—SSW as a research method, particularly, an action-research method. In doing so, I will provide a useful methodological blueprint for research conducted in sensitive contexts or about sensitive topics. 93

94  Handbook of sensitive research in the social sciences

SOCIAL STREET WORK: DEFINITIONS As Defined by Social Street Workers The International guide on street work methodology throughout the world (International Network of Social Street Workers & Dynamo International [INSSW & DI], 2008) is the reference publication for SSW practitioners. SSW was defined as ‘a socio-educational action carried out within a long-term perspective starting from the needs, demands and aspirations of target audiences and which strives to strengthen their capacities and empower them to take ownership of and build their own lives. [original emphasis]’ (p. 25). It is an ‘extra muros [outof-walls]’ (p. 16) approach directed to excluded or marginalised children, youth and adults who cannot be reached by existing organisations and institutions. Such a concept is extracted by pulling the pieces spread across the publication. Indeed, a section for a clear SSW formulation is absent. This is not incidental, provided that ‘there is no universal framework on the methodology of social street work’ (p. 10), which is justified because creativity, diversity, and flexibility are needed in SSW practices. Nonetheless, this poses challenges in terms of conceptual clarity and validity. Although a universal model of SSW is absent, a common underlying framework between different SSW approaches needs to be in place. In other words, perhaps SSW might be best conceived as a meta-methodology (such as an intervention model of intervention models), rather than a method per se. In this vein, Segulin et al. (2019, p.9) argued that ‘The common characteristic of street work in every country is the fact that we all go out of our institutions to work with young people in their own environment with the purpose of getting to know them, establishing trustful relationships and understanding and answering their needs and talents.’ Therefore, SSW practitioners self-define as relentlessly ‘practical’ because they carry out activities in peoples’ immediate social environments to directly promote their positive development. Finally, SSW, as defined by its professional group, bends toward ‘streetbased youth work,’ ‘education,’ or ‘non-formal education,’ more than other orientations or domains such as harm-reduction (INSSW & DI, 2008; Segulin et al., 2019, 2021). That is, its focus is the educational process rather than public health or risk minimisation concerns. As Defined by Social Scientists Generally speaking, researchers seem to be concentrating efforts on evaluating the outcomes of SSW (see, Hureau et al., 2023; Miller, 2013; Ross et al., 2023) rather than elaborating on the concept (Andersson, 2013). By drawing a ‘sample’ of SSW definitions by convenience, one might conclude that this is an activity mainly performed in natural, extra-institutional public spaces and contexts that the worker does not control. Rauwerdink‐Nijland et al. (2023) posit that SSW involves a long-term process in which a worker offers forms of social support— mostly in streets and parks—to highly marginalised clients. These contacts are driven to foster rapport, trust and motivation in bridging the gap between institutionalised public services and clients’ needs. They argue that Bronfenbrenner’s (1979) bio-ecological model is at the heart of SSW due to the worker’s tie to the client’s environment, which needs to be developed to support the client. However, absent from this definition are SSW goal(s) and/or vision. In reviewing gang outreach programmes, Hureau et al. (2023, p.759) define SSW as the development of activities by professionals ‘who perform their work on the street, beyond the walls of parochial institutions’ to deliver anti-violence services. Remarkably, the procedural

Social street work: intervention method as a research method in sensitive research?  95 elements are left out of the picture, and this formula is limited to a specific social problem/need—a common pitfall (Andersson, 2013). In addressing such procedural elements, Andersson advanced that outreach work is directed towards target groups whose needs are not currently being attended to by generating ‘workable connections to support [social] systems’ (p. 185), encompassing the following stages: (1) initiating contact; (2) initiating change-driven actions; and (3) sustaining support for the change process to be continued. In a nutshell, scholars’ conceptualisation of SSW seems more akin to incorporating the outreach and its respective processes of action—the logic of performing actions and behaviours outside the walls of an institution, to reach out to individuals and/or groups. Moreover, the definitions advanced are highly sensitive to the context that leverages SSW in the first place (such as gang, school truancy, violence) or to what is usually framed as the SSW ‘target population.’ For instance, the definitions would differ for an SSW project aiming to educate children in a low SES neighbourhood and an SSW project aiming to help homeless people with healthcare needs.

SOCIAL STREET WORK OUTCOMES: EVALUATION STUDIES I now turn to providing some examples of recent studies on diverse outcomes of SSW. Results from RCTs of a perinatal intensive home visitation programme in which nurses outreach to low-income families with an unborn/newborn child, providing education ∕care related to maternal and infant healthy development show diminished risk for child neglect, improvements in the child’s neurodevelopment and mothers’ employment, as well as reduced reliance on subsidies (Olds, 2006; Miller, 2013). There are especially positive effects on cognition and behaviour at the age of 18 years for the offspring of mothers with limited psychological resources (Kitzman et al., 2019). The programme’s estimated benefit to society per family was $53,900 over a 19-year period (Miller, 2013). The benefit-to-cost ratio was $5.3 to $1, with greater savings attributed to prevented infant deaths and youth crimes. Hureau et al. (2023) employed a quasi-experimental approach to study the effects of the StreetSafe Boston project on gang violence. Their approach was particularly careful in parsing out the intervention effects by triangulating matching strategies and considering time trends in a seven-year follow-up. They showed a null effect of this SSW intervention on gangrelated shootings, trending toward iatrogenic effects. In a different vein, Lobo-Dos-Santos, Fernandes, and Pereira (2021) used a single-case research design with three replications, showing that their SSW intervention produced consistent declines in school absenteeism/truancy rates across students/classrooms of mostly Romani students in Porto, Portugal. Furthermore, it is plausible that SSW affects not only individuals but also wider social contexts in which the individual is embedded. For instance, caregivers of people experiencing homelessness who had frequent contact with street workers were less likely to worry and reported improvements in their relationship with the homeless person (Rauwerdink-Nijland et al., 2023).

THE GAP IN THE LITERATURE As shown, the efficacy of SSW in pursuing its varied goals cannot be taken for granted. The evidence of positive outcomes following SSW intervention depends on the specific domain

96  Handbook of sensitive research in the social sciences being assessed, the type of programme, and the study methodology. Nonetheless, the value of SSW, as a cross-domain overarching methodology that seeks to achieve positive social outcomes, is yet to be established empirically. That said, the scientific literature focuses mostly on assessing the outputs of SSW. The existing formal attempts at conceptualising SSW, both from practitioners and scholars, merge into the idea that SSW is an outreach method that serves to create a trust relationship that activates behavioural or psychosocial change in individuals and/or groups. And yet, it is seldom recognised that in so doing, the social street worker (or the SSW team/project) necessarily observes reality, collects, analyses, and interprets data. Sometimes, there are outputs of such endeavours, such as field notes, diaries, biographical accounts, intervention activities reflections, self-recordings, reports, and presentations. Furthermore, the social street worker often does this by having the participants targeted by the intervention act as fellow research partners. In most cases, this is just implicit in the daily practice of SSW. There are at least two exceptions to this that I can point out. First, in the International guide on street work methodology, the first stage of SSW is explicitly acknowledged to be ‘studying the setting both theoretically (historical, social and cultural context) and practically (meeting people in the neighbourhood) [emphasis added]’ (INSSW & DI, 2008, p.28). The ‘practical’ aspect of researching the setting is of utmost importance as it reflects that the social street worker defines (consciously or not) a set of questions that guide their entry in the field, in constant reciprocal construction with the people they encounter. Not only is this the first necessary step of SSW, but also the stages are stated to be circular, which means that researching, implicitly, is considered a permanent aspect of SSW. More specifically, despite the intention to move forward to later stages (such as intervention or community mobilisation) coming back to the first stage is a way to ‘anchorage’ (p.28) actions and cyclically renew them. It follows that research processes, either explicitly acknowledged or not, systematically performed or not, conducted with more or less rigour, are indeed at the heart of SSW. Second, researchers, especially qualitative researchers, are currently discussing the advantages of building trust relationships with the community/participants even before the data collection process starts (Freeman et al., 2021). In other words, they reach out to participants and gatekeepers, ‘becoming immersed in the community’ (Ellard-Gray et al., 2015, p.4) and conduct interviews/research activities in places of their choice and in their communities. Ellard-Gray and colleagues argue that taking what seems to be a typical SSW approach might be beneficial to conduct research with vulnerable, hard-to-reach, or hidden populations, which are exactly the usual target groups in SSW.

METHODOLOGICAL HYPOTHESIS I hypothesise that SSW can be used as a legitimate research method and that it should be utilised as such in the social sciences. Notwithstanding, research methods can be understood from a wider or a narrower perspective. In the former, study designs are at stake (such as longitudinal, experimental, observational, case study, behavioural genetics or action-research). In the latter, techniques of data production (such as participatory mind maps, symbol or objectbased reflection/enquiry), collection (such as focus groups or surveys), or analysis (such as content/categorical analysis, mapping or SEM) are at stake.

Social street work: intervention method as a research method in sensitive research?  97 Whenever a fine balance exists (or is in development) between research goals (knowledge/ evidence production) and transformation/action goals (producing social change) with reciprocity between them, I consider this to be research-oriented SSW. Therefore, SSW practices, projects, or programmes that build upon knowledge/evidence production as a structural component of the intervention are located within the research-oriented SSW epistemological framework. But assuming that SSW is (or can be) a research method, without reflecting on and analysing the epistemological conditions for a method to be considered legitimate in the realm of science would be premature.

RESEARCH METHODS REQUIREMENTS: EPISTEMOLOGICAL CRITERIA This chapter does not include a systematic and complete discussion of the epistemological underpinnings of scientific methodology. However, a brief incursion into the theme is warranted to support the fundamental argument developed. I discuss four major characteristics of the scientific method: empiricism, systematicity, hypothetical process and (inter)subjectivity. Stuart Mill’s (1875), Bacon’s (1889) and Bachelard’s (2009 [1940]) oeuvres have stressed that the scientific method is grounded in some sort of sensorial experience. Reality can be observed or manipulated and, thus, captured and described through human senses. Considering their views, thinking is a necessary but insufficient condition for a method to be scientific. To begin with, a method needs to be empirical—allowing for experiencing a given reality through the human sensory organs. Second, a research method needs to be systematic. This is a principle extracted from Cartesian epistemology, whereby each problem should be (1) simplified by decomposition into multiple parcels; (2) each parcel solved in an iterative step-like process from the simplest to the most complex; and finally, (3) exhaustive reviews for each parcel’s solution should be conducted. Exactly repeating the process for each problem (or grouping of problems) establishes the necessary consistency to describe/identify patterns. Put simply, a scientific method is a system of rules governing human interactions or thinking operations (oftentimes both) that should be repeatedly applied to a directly observable (or abstract) object across time and/ or situations to ascertain its properties. Third, in following Popper’s (1959) critical-rationalism, on the one hand, and Bachelard’s (2009 [1940]) ultra-rationalism, on the other hand, a method is hypothesis-driven and guided by thinking. For Popper, empirical experiences and rational operations should be in iterative confrontation, but for Bachelard, they should be in a circular dialectic. And yet, both would agree that ‘it’s all about thinking’. That is—to be legitimate—a method ought to directly flow from hypothetical ideas grounded in a priori knowledge. Following M. Foucault’s archaeology and G. Canguilhem’s thinking, such an a priori goes beyond scientific knowledge. Thus, a legitimate research method should be designed in a way that is justified/calibrated by the idea that gave birth to it. The idea needs to be epistemologically sound, and consistent with the rules of a given thinking or representation system—whether it is logic, scientific literature, native knowledge, popular culture, a micro-culture, or even common sense. The terms through which the real-world representation is considered acceptable are precisely informed by ideas and questions. Hence, ‘data’ is produced only if it is meaningful to the idea in the first place: because the idea (hypothesis/question) demarcates the reality to be experienced.

98  Handbook of sensitive research in the social sciences Multiple ideas might be tenable by the ‘legitimacy’ built into their epistemological origins (such as previous scientific theories, literature, popular discourses or cultural traditions), but they are not automatically deemed ‘scientifically true’. The hypothetical idea needs to generate a system of rules to empirically engage with the world that is systematic enough to assess the idea’s accuracy in representing the real world. It follows that this principle cannot stand alone (Mill, 1875; Bacon, 1889; Popper, 1959). Last but not least, inspired by M. Serres’s L’interférence (1972), the researcher and research object interpenetrate each other. However, each object has a network of relationships with other objects, and the same applies to researchers. In contemporary science, a complex researchers—objects network in reciprocity of actions and thoughts exists. In qualitative social sciences, this has been most commonly framed as intersubjectivity and tied to interpretivism and/or constructivism (Flick, 2009; Mason, 2002; LeCompte & Schensul, 2010). Drawing on such views, a research method should elicit multiple voices and views about a phenomenon; human subjects become co-researchers as their perspectives about the world are privileged (LeCompte & Schensul, 2010). A procedure becomes a legitimate research method to the extent it is capable of evoking a variety of (latent) meanings about manifest human behaviour/ phenomena. These meanings are another ‘layer’ of the real world, which can be accessed through communication—often such a layer is named ‘culture’. In that sense, the scientific method in the social sciences needs to be intersubjective, implying the co-production and negotiation of rules to achieve the ‘truth’ between the researcher and the researched. Hence, the research method is reinvented and adjusted in a circular process due to its participatory and/or indigenous/native components (Mason, 2002; Chilisa, 2019). In fact, anthropologists started by observing events from a distance; however, Malinowski counteracted this by recognising the need to immerse within the subject community; hence, cultural anthropologists emphasise searching for the ‘emic’ (S. Fox, personal communication, 12 April 2024), the knowledge from an ‘insider perspective’ (vs. external observer perspective)—this can only be cultivated through a method that ingrains and elicits inter-subjectivity. In summary, a research method in the social sciences needs to meet at least four criteria: empiricism, systematicity, hypothetical process and (inter)subjectivity. The question that arises at this point is whether SSW meets these criteria.

DOES SSW MEET THE CRITERIA FOR A RESEARCH METHOD? Criterion 1: Empiricism First, one needs to ask whether SSW is empirical. That is, does SSW allow for experiencing a given reality through the human sensory organs? The practice of SSW involves precisely the ‘extra muros’ behaviours and attitude, which means that the worker needs to displace their body and mind to meet participants in public spaces.1 In the spatial trajectory made to meet clients; in meeting clients in loci; in leaving the streets, and oftentimes, after leaving the streets (memories, objects), the social street worker forcefully, intentionally, consciously and unconsciously recruits the sensory organs to experience and make sense of the social and physical realms encountered. In this aspect, SSW is very similar to ‘field work’ in ethnographies (LeCompte & Schensul, 2010; Liamputtong, 2020). In this case, however, the degree of involvement and immersion in

Social street work: intervention method as a research method in sensitive research?  99 the field is even greater to allow for the gain in social capital the worker needs to inspire social change. It is difficult to imagine any other method that would be as empirical as SSW, given that the worker ought to be relentlessly present (Baldwin & Zeira, 2017), feeling the community, interacting with clients, seeing and being seen in the public space (Lobo-Dos-Santos et al., 2021). Once the worker has established trust and is enmeshed in the public spaces for enough time (at least six months, usually), the specific empirical reality becomes inscribed in the workers themselves. The social street worker often embodies the sociocultural, interactional, and relational milieu (Holmes, 2013) in a way that they can reproduce those cultural and behavioural patterns with fidelity: in-context (such as interacting with the participants); representing them (for instance, retelling to others and symbolising through schemes); or outof-context (for instance, in the office, talking with other professionals with no immediate or direct contact with the public spaces). In conclusion, it is a no-brainer that SSW is an empirical method. But is this empirical character of SSW systematic in any way? Criterion 2: Systematicity In this regard, the answer is more complex. Provided that SSW is constituted by a multitude of diverse practices, bolstering both the creativity and uniqueness of each worker, project, and group of participants, how can it also be systematic? First of all, despite the flexibility to meet clients’ needs and the diversity of approaches, virtually every SSW project sets a regular time basis for operating in the streets. One might argue that the streets are not always the same and that the intervention recipients change between occasions. Nonetheless, the area in which those street segments/corners are embedded, and the focal group rarely change for a specific SSW practice. Hence, the repeated outreach to a delimited community/territorial area and focal population group is performed on a routine schedule (for example, Wednesdays and Fridays from 8 p.m. to midnight). Second, projects and teams of SSW vary in the extent to which they are systematic in pursuing or producing data. Therefore, the question of producing or collecting data does not come as ‘naturally’ just as the routine of outreach in time and space does. However, if the SSW projects or programmes set the routine operation of providing organised records of street encounters/ events, including activity content (what), participants (whom), time/duration (when), setting (what was surrounding the interaction), then SSW’s degree of systematicity can be uplifted. For instance, StreetSmart (StreetSmart, 2024) has recently developed a smartphone application that allows systematic data collection, including information on activity content/type, the participants, youth development and degree of participation in activities, tracking worker movements and progress, time spent in activities, and youth feedback/evaluation (Sweldens, 2021). Such a tool offers great advantages because it allows both workers and young people to interact through the platform, freeing the worker from pedantic tasks related to writing reports or writing field notes on the streets. Digital platforms and apps to collect/produce data in SSW can be useful. I have experienced the pains of carrying out these procedures in paper-and-pencil grids/tables. In our SSW project, we were systematic in collecting data from each encounter, reporting at least seven categories of information: the focal participant(s), the type of intervention, the date and time at which the specific encounter took place, duration, location, psychosocial or behavioural output, and the intervention technique used (Lobo-DosSantos et al., 2021). Using either digital or traditional procedures allows for building reliable and useful data. For instance, we could estimate how the amount of time spent with young

100  Handbook of sensitive research in the social sciences people in the encounters ‘paid off’ in terms of additional time spent in classes (Lobo-DosSantos et al., 2021). In conclusion, combining the organic time scheduling routines of SSW with planned data collection can turn SSW into a systematic empirical method and, thus, a serious candidate for achieving the status of a research method. Criterion 3: Hypothesis-driven Processes Is SSW guided by hypothesis or research questions? Not explicitly. Yet, taking a deeper look, SSW is often implicitly guided by hypotheses, investigation questions, or both. Back to a point previously made, the workers first studies the community by immersing themselves in the streets, observing and progressively engaging with the public space actors (INSSW & DI, 2008). It follows that when starting an intervention, there are implicit research questions: What are the challenges faced by the target group? How does the target group self-define? What are the symbols, rituals, and norms of the public space? What are the implicit and explicit relational patterns and cultural codes? How do people perceive the worker’s social roles? No street worker can navigate the streets (Anderson, 1999) or be productive in their work goals without addressing these questions. In SSW verbiage, this is an integral part of the ‘infiltration method’ (INSSW & DI, 2008, p.32). As a scholar trained in research methods and epistemologies, I need to name them as what they are: research questions! In the multisystemic intervention framework, Henggeler and colleagues (1998) proposed that after an extensive evaluative diagnosis of antisocial behaviour causes across multiple ecological contexts (such as peers, family, and school) and their interactions, the interventionist should proceed to generate hypotheses—just like in a study, one proceeds from a literature review to research questions to hypothesis framing. However, the hypotheses in multisystemic intervention are intervention-hypotheses derived from diagnostic-hypotheses. The diagnostic hypotheses state how the interactions between different ecological systems sustain the youngster’s high-rate antisocial behaviour (for example, the family sets very few rules at home and the peer culture reinforces delinquent behaviours); the intervention-hypothesis naturally flows from the diagnosis-driven hypotheses. Thus, if the worker changes the relationship between such systems in the intended direction (such as training the family on how to set clear rules and limiting unsupervised time by directly modelling how to do this), it is expected that the antisocial behaviour will be reduced. If the intervention-hypothesis is not producing the intended results, then it should be abandoned; the diagnosis needs to be revisited and updated—chances are that it is incorrect (the hypotheses are disconfirmed). In our own SSW project, we sought to proceed in this fashion. Doing so allowed me to collect and analyse participatory data on which to base a diagnosis of high school absenteeism of Roma children/youths (Lobo-Dos-Santos & Montenegro, 2023) and to promote higher attendance levels based on such diagnosis (Lobo-Dos-Santos et al., 2021). In other words, our SSW practices were driven by research questions: How do non-Roma actors construct Romani students’ educational experiences, particularly ‘failure’? How do Romani groups in this community deconstruct and react to such narratives? Are there discriminatory practices in school discipline? Answering these questions allowed for diagnoses of the high rates of school absenteeism (see Lobo-Dos-Santos et al., 2021, pp.58–60 and LoboDos-Santos & Montenegro, 2023) and Romani youth school indiscipline (Lobo-Dos-Santos, 2020a). In turn, intervention hypotheses were developed based on them: if a respectable mentor who understands Romani cultures appears at schools and streets to provide intercultural

Social street work: intervention method as a research method in sensitive research?  101 mediation, restorative justice practices, psychological support, and bonds to school, it would augment student/parent motivation for class attendance. Some of the respective SSW actions or techniques that were used to test these hypotheses were motivational interviewing, the worker taking the children to school, and intercultural games in the playground. Finally, this motivated data collection/production about the intended processes and goals to achieve, assess impact, and understand intervention fidelity. Perhaps the strongest way to carry out diagnoses in the multisystemic framework and others (Andrews & Bonta, 2010) is through immediate contact with the person and ecological systems (for instance, community, schools, families, peers, streets)—restated, to use SSW. Any rigorous SSW programme/project will be at least implicitly working based on diagnosis and intervention hypotheses (Echeverría, 2021). Again, what varies is how systematically these diagnoses and intervention hypotheses are applied, and how they explicitly direct SSW practices and goals. To conclude, SSW is not necessarily hypothesis-driven, but it can be, and when it is, it is also a suitable action-research method. Criterion 4: Intersubjectivity Does SSW evoke (inter)subjectivity? Can it be a vehicle for accessing (multi/inter)cultural meanings, scripts and signals? If SSW can meet (but not necessarily meet all) the three previous requirements, it can certainly meet the last requirement. The reason for this lies in the gist of SSW: ‘seeing the person’, not the symptoms or labels (INSSW & DI, 2008). The relationship with individuals/groups is patronised by the need to recognise their uniqueness and singularity (see INSSW & DI, 2008, p.21). At each street encounter, meaning is evoked to interpret the sociocultural streams of information (co)occurring in a given public setting, in which actors come to interact and perform. Additionally, the worker needs to be in constant active reflexivity (Mason, 2002), thinking about positionality. In SSW, an understanding of meanings, discourses, rites and symbols from both ‘native’ (emic) and ‘outsider’ (etic) perspectives is sought. This is because the street worker negotiates with those in positions of power (such as teachers or politicians) to produce positive changes in the contexts that affect their clients, who often are in powerless positions (such as homeless youth). In using SSW, a worker who was once a foreigner can be increasingly seen as an ‘insider’ in the setting, but the ‘insider’ status is always relative (for example, some participants will consider the worker an insider after many years, while others will continue to define the worker as an ‘outsider’) (Narayan, 1993). Put simply, grasping the meanings attributed to the same phenomenon across different persons and groups to underscore and achieve intersubjectivity is not something that SSW seeks to become scientific. It is a feature that high-quality SSW possesses (INSSW & DI, 2008), making it suitable for the status of a qualitative research method.

SSW AS A RESEARCH METHOD AND ITS ADVANTAGES In summary, SSW is empirical to the extent that it is carried out by immersion and sensory experience of public spaces. SSW is systematic to the extent it combines spatial-temporal presence with record-generation routines. SSW is guided by research questions—at least at the onset of every project/programme. It can also be hypothesis-driven when the empirical reality

102  Handbook of sensitive research in the social sciences observed during outreach work is systematically analysed, leading to diagnosis-hypotheses and intervention-hypotheses (Henggeler et al., 1998) generation. Finally, SSW is intersubjective by design and philosophy. It is an approach whose point of departure is understanding the ‘other(s)’ in their worldview(s). Thus, in proceeding with this epistemological exercise, I argue that SSW can (albeit does not necessarily!) meet the four basic criteria for being used as a reputable research method in the social sciences. It is appropriate, then, to turn to the advantages of using SSW as a research method. I will present five domains in which SSW can be particularly useful as a research method: research designs, data collection, time-intensive within-person studies, data construction techniques, and regular study procedures. Whenever possible, I will provide examples of using SSW in my past, present, and future research activities on/with Romani children, youth, and families from impoverished communities in Northern Portugal. SSW as a Research Design There are several scenarios in which SSW can be or become a general framework to formulate research questions, address them, and define data collection procedures. In such scenarios, the study structure is defined by SSW itself—within the boundaries of systematic outreach to participants within a given delimited space to help them improve their lives and promote emancipation or social change. Hence, the crafting of research questions and the carving of strategies to address them, as well as the definition of what is a valid way of answering, are situated within those boundaries. I can see at least five instances that support the idea of SSW as a research design: participatory-action research (sociology/education/victimology), community-based decolonial/indigenous research (anthropology/community psychology), mixed-methods research (public health/psychology), single-case study designs (education), and case studies (criminology). Participatory-action research Some studies in critical sociology and education seek to improve life outcomes for individuals or groups based on the principle of reaching out to participants, having a consistent, direct and immediate presence in the field while co-building the intervention and/or evaluation processes with participants (Flecha & Soler, 2013; Chilisa, 2019; Liamputtong, 2020). The participation level of such approaches can fall between consultation and participants’ full control (Arnstein, 2019). In my experience, I consulted Romani children, youth, families, mediators, and community leaders to define—in their own terms—the challenges associated with the White narrative about Romani pupils’ school failure (Lobo-Dos-Santos & Montenegro, 2023). This was a step in trying to co-build a vision of student success rooted in various community worldviews, which was performed through SSW actions and activities: street talks, games, home visits, and naturally occurring socialisation events. After that, I partnered with some of them to develop initiatives in pursuing the vision of student success (such as culturally responsive restorative practices and teaching content informed by local Romani languages and cultures [Calon]). Community-based decolonial/indigenous research Anthropologists and psychologists have underscored the decolonisation of researching underprivileged and marginalised communities by balancing the power across phases (planning,

Social street work: intervention method as a research method in sensitive research?  103 acting, reflecting), generating an equitable research-researched circularity in community transformation projects (see Chilisa, 2019; Minh-Ha, 1989) as well as observational studies designed to inform interventions (Roy & Kwon, 2007; Suarez‐Balcazar et al., 2022). SSW can be used as the research design through which the decolonisation process and balancing are achieved, especially in action-research designs. This is because reaching out to participants happens consistently to seek their empowerment at every public encounter (INSSW & DI, 2008). When I first started working in schools with high proportions of Romani students in a community in Northern Portugal, I had two years of previous experience as an interventionist in that community. However, had I not adopted a decolonial/critical approach after three months of immersion in the schools/community, I would have contributed to the systemic inequities I was supposed to dismantle. In addition, had I not engaged in SSW by experiencing the lives of these Romani children and youth in both out-of-school and in-school contexts, I would have misunderstood the phenomena of school absenteeism. This is because I would feel, code, and interpret my observations and experiences through the lenses of the non-Romani adults working in the school. This would be due to bias connected with the privileged identities that I shared in part with those adults (such as middle-class and education level). As stated in my previous piece (Lobo-Dos-Santos & Montenegro, 2023), I was prompted and challenged to take a different stance through Romani pupils’ counternarratives and resistance. However, that did not happen within classrooms. Restated, it happened in classrooms right in front of me, but due to my internalisation of privilege, I could not see the bias. Once systematically socialising with them in the streets, a new perspective opened up for me. I was compelled to pay attention to how they defined my identity and attitudes and how they saw themselves in comparison to how they were construed and defined by teachers. Consequently, I was finally able to identify the ‘invisible’ bias and racist attitudes towards them— a ‘click’. I had found the way towards a critical, decolonial and indigenous approach (see Lobo-DosSantos & Montenegro, 2023). This first step began when, seated on the benches of the public housing setting, a youngster told me: ‘We have a language of our own: Romanô!’. Mixed methods research In my intellectual crib—criminology—Maruna (2023) advocated for narrative criminology as a tool for bringing epistemic justice to the study of offenders and convicts. This is best expressed by the ‘nothing about us, without us’ principle (see also Chapter 20 in this volume). Through projects, organisations and practices in which researchers partner with ex-offenders or ex-gang members, knowledge and interventions are being created to promote desistance from crime. This activist ‘narrative criminology’ based on ‘knowledge by experience’ is often based on SSW tools. In the same vein, Cullen (2011) reflected on the limitations of modelling community X person variable interactions in explaining criminal behaviour, instead recommending the combination of large-sample questionnaires with in situ understanding of how individuals navigate contexts (such as communities and streets). He argued for going and ‘talking to offenders’ (p.315) and directly experiencing those contexts with individuals. In other words, living/hearing the stories with the people that are living/telling them. This is exactly how SSW ‘works’. Relatedly, in M. Klein’s (1971) early studies of US gangs and street workers, there was a balance of quantified coded observations and narrative insights. He acted as a ‘social street researcher’ by accompanying the social street workers in reaching out to gangs and gang members while they navigated public spaces.

104  Handbook of sensitive research in the social sciences Single case study designs Single case studies consist of a quasi-experimental design in special education programme evaluation (Horner et al., 2005). An individual (or a very small N) receives an intervention, and then the intervention is intentionally removed or staggered across time. Several repeated measurements of the outcome (six or more) with short time lags occur for intervention and no-intervention periods. The data are plotted graphically and visually inspected to assess whether there are higher/lower levels of the outcome during the intervention periods compared to intervention removal periods. An experimental effect is validated when the same pattern is found across at least three different periods or three different participants/groups of participants (Horner et al., 2005). The connection of single case study designs to SSW is organic. Intervention points are the times at which the street worker encounters the participant or group, and outcome measurements are defined as any behaviour or event of interest happening before (baseline), concurrently, and following that specific street encounter in time and space. I employed this methodology without knowing it had been previously formalised by researchers, despite my training in experimental methods. More importantly, this was part of designing our SSW intervention project, informing data collection. School absenteeism/attendance rates over several time points before the SSW intervention, during the intervention, and after the intervention across three groups were plotted: a first-grade classroom, a seventh-grade classroom, and a group of first graders displaying high-rate absenteeism. The results suggest a causal impact of SSW in reducing school absenteeism because, following SSW encounters, attendance increased and absenteeism decreased. In Figure 7.1 (below), I display the application of single case-SSW research design to school absenteeism in the first-grade classroom (comprised mostly of Romani pupils); black bars represent the intervention period, when SSW encounters took place during each week. The visualisation suggests an experimental effect of SSW on school absenteeism. Another alternative in which SSW might be used is to observe and measure the ‘dependent variable’: let’s suppose that a within-classroom intervention occurs at different time points. Repeated measurements of the outcome of interest might be related to behaviours or events that the social street worker can observe when encountering a participant or group (such as the amount of time spent in the street, play skills, and motor skills). A street worker can collect data about participants’ development over short periods (for instance, day-to-day). Thus, I argue that single-case study designs and SSW should go hand-in-hand, and the development of the intervention aspect of SSW should lead to the development of the research aspect of SSW through the application of single-case study designs. Perhaps the reason why most SSW interventions do not benefit from quasi-experimental evaluations or any rigorous evaluation at all is the lack of knowledge or unfamiliarity with this type of design. In conceptualising SSW as an action-research method, it surely needs to incorporate single-case study designs. Case studies Personal or collective stories and narratives are often the defining features of a case study, which can be an extreme or a typical case (Flick, 2009; Mason, 2002; Liamputtong, 2020). Case studies are often conceptualised as a research design. However, the SSW underpinnings of case studies are seldom made explicit. In classic books, such as The Jack-Roller by Clifford Shaw (1930) and Outsiders by Becker (1963), the researchers accomplished their goals by accompanying the delinquent or the marijuana consumer systematically (wherever they may

Social street work: intervention method as a research method in sensitive research?  105

Notes: Romani students comprised about two-thirds of the classroom. Data is from official school records of days of classes missed by each student as reported by teacher daily attendance checks (2020–21). Percent represents the amount of students missing classes for the full week (noattendance) relative to the total number of students in the classroom. The grey bars represent the baseline before COVID-19 cases were reported in the school. Dashed white bars represent the pre-intervention period when COVID-19 infections started to happen. COVID-19 infection cases continued to be detected and reported thereafter. Black bars represent the period of the SSW intervention. Solid line white bars represent the post-intervention period. During the SSW intervention, the proportion of students in serious absenteeism consistently dropped, counteracting the tendency of increasing absenteeism levels prior to the intervention; the absenteeism levels started to increase again when the intervention was removed (solid line white bars), but they did not achieve the levels found during the COVID-19 infections ‘crisis’ (dashed white bars). Source: Adapted from Lobo-Dos-Santos, Fernandes & Pereira (2021).

Figure 7.1  Proportion of first graders missing the full week in the classroom receiving SSW (N = 24) go or be). That was the technique and method through which reality was grasped and meaning apprehended, leading to theory development in sociology and criminology. One of the major principles of the School of Chicago was indeed going ‘out of the office’ into the communities, hearing stories and observing situations in vivo (Park, 2019 [1925]). When intervening as a social street worker, I encountered a six-year-old Romani boy who became our intervention-research ‘case study’. Recent qualitative (Dragos, 2021) as well as quantitative (Vazsonyi, 2023) work in European countries have shown that teachers tend to have lower expectations for Romani students, underrating them in social and emotional skills, as well as reinforcing deficit discourses about Romani children. These deficit discourses mirror the majority society’s stereotypical negative depiction of Romani people as exotic outsiders with limited capabilities and/or who are intrinsically deviant/criminal (Hancock, 2002). I was with this Romani first grader in the school, the streets, and even at his home, at least two to three times a week. I used to accompany him into an array of socialisation experiences and

106  Handbook of sensitive research in the social sciences contexts. In my constant interaction with him and relevant others, we were construing and apprehending meaning (Mason, 2002; Mead, 1934), as well as producing new inter-cultural narratives (Alim & Paris, 2017) about missing classes, learning difficulties, anger regulation/ behavioural problems, education, and values. One of the most impactful insights I got from this process was that Romani children, early in development, can express agency and clearly define a commitment towards school in ways that might be different, somewhat opposite, from the context in which they are embedded. The child once told me that if he had the money, he would offer to buy a radio alarm for his mum as a birthday gift. Intuitively, I immediately asked, ‘Why an alarm?’ The answer was: ‘So that she can wake me up and take me to school’. This was a counternarrative of the child against school stakeholders’ mainstream narratives (such as the idea that Romani children are passive agents when it comes to school attendance or that successful schooling processes are not compatible with expressing and maintaining Romani cultures/identities). Those narratives to which he was consistently exposed, directly and indirectly, consisted of the story that Romani children’s choices or motivations were unimportant in early school absenteeism matters. Another impactful insight we achieved together was that he could understand when he was being discriminated against by his teacher based on the intersection of the following identities: ‘absentee student’ and Romani (Cigano). Once, the teacher called him a ‘liar’ in front of the whole class. I told him not to consider what he had just heard. He rapidly looked at me and said, ‘Don’t worry, I know! Don’t worry!’ Even before I said something, I looked at him, and he was anticipating what I was going to say. He discarded the message received. He understood that, despite his identities were being expressed while navigating streets, classrooms and playgrounds with me, they were never equated to dishonesty (that is a ‘liar’) by me when he spoke his truth or tried to request emotional support without the necessary verbal skills to do so. We understood that different adult authority figures interpreted his identities and interacted with him differently. Because I was directly in situ, we could activate intersubjective meaning in those moments. I was acting on him as much as he was acting on me; I was researching him as much as he was researching me. Better said, an SSW case study resides in the street worker-participant dyad: they become a unit. Thus, SSW can structure dyadic case study designs, particularly in anticipation of an intervention or as part of a process/outcome evaluation. Interestingly, SSW reifies the idiographic approach to research and intervention. Applying such an idiographic approach in SSW dyadic relationships is a very promising avenue for advancing research with marginalised populations, particularly in sensitive contexts. SSW as a Data Collection Technology From the arguments and evidence presented so far, it becomes virtually self-explanatory that SSW is advantageous for research, whether qualitative, quantitative, or by mixed methods, when used also as a data collection technique or tool. When ethnographers refer to ‘fieldwork,’ they are often implying that the researcher carries out activities within the sociocultural contexts studied, often benefiting or supporting the participants or communities—what is usually termed ‘participant observation’ (Bernard, 2017; LeCompte & Schensul, 2010). In my view, this is more than ‘participant observation.’ Endemic to these approaches is the SSW method—that is, the ethnographer works outside the walls of an institution (goes to a ‘field’; the field is not always extra-institutional but involves some form of outreach) and serves

Social street work: intervention method as a research method in sensitive research?  107 people. Ethnographers usually write their experiences from these lived experiences, turning them into raw qualitative data (see Moretti, 2017, for ‘walking’ the streets as method). Then, they analyse it and develop theories. A beautiful illustration can be found in Elijah Anderson’s (1999) Code of the Street: Decency, Violence and the Moral Life of the Inner City. In addition, researchers can use the same approach and gather quantitative data by going into the streets and quantifying human phenomena, or even combine both approaches. Moreover, even when no intervention is carried out under an SSW framework, observational studies can still benefit from using the basic SSW principle of reaching out to public spaces and collecting data (for example, through interviewing). More specifically, in researching the ‘so-called’ hidden, hard-to-reach, or vulnerable populations (Ellard-Gray et al., 2015), in which low SES Romani people living in segregated communities can be included (Molnar, 2023), the researcher needs to find, maintain contact with and navigate sensitive contexts. The use of SSW will come naturally or forcefully as a need, and it should be explicitly acknowledged as one of the most suitable methods to address challenges associated with this type of research (which requires specific training). For instance, in my experience with Romani people in Northern Portugal, I sought to collect data about the parents’ and community inhabitants’ perceptions of school discipline/ justice in terms of its objectivity, bias, and fairness. I used part of my time in SSW activities to orally administer some closed-answer questionnaires through home visits and street encounters. I was then able to analyse and present such data to the school board and provide evidence that some disciplinary measures were being perceived as unfair, counterproductive and discriminatory (Lobo-Dos-Santos, 2020a). Thus, I circumvented the difficulties of getting participants to fill out the questionnaires by themselves (such as reading difficulties, lack of energy to read, moving to the school to fill out the questionnaires). Furthermore, when approval of Institutional Review Boards or ethics committees needs to be secured, this might be a suitable option to promote the study’s ethics by reducing the burdens associated with participation in the study. SSW in Time-intensive Within-Unit-of-Analysis Research SSW can be a particularly powerful and immersive data-driven/exploratory data-gathering technique for micro-level, situational, time-intensive within-person studies. Therefore, a suitable way of collecting data following Molenaar’s (2004) call to ideographic psychology might be through SSW. Time-intensive within-individual analysis consists of repeated observations in a specific time interval, which can range from seconds or minutes to hours or weeks (time intervals between measurements or observations are usually shorter than in traditional longitudinal research, and the number of follow-ups is also larger). Given the high proximity of the street worker to a limited number of individuals and its incursion into the natural flow of street events, high precision and ecological validity of data are expected for intra-individual analysis, both for psychometrics and qualitative data. Needless to say, the street worker cannot be invested full-time in intervention activities— strictly speaking—if this is to be accomplished. Instead, they need to intentionally shift the workload weights attributed to research and intervention over time and street encounters/ situations. Indeed, the worker can proactively manipulate the dosage of intervention delivered (Horner et al., 2005). Thus, part-time, the focus can be on observing, counting, and/or evaluating.

108  Handbook of sensitive research in the social sciences Utilised in this fashion, I believe SSW can serve a number of instrumental goals: (1) piloting studies (for instance, before conducting large-scale within-individual intensive surveys through smartphone apps, first conduct time-intensive direct observation in SSW with a few individuals), (2) hypotheses generation (such as deriving latent constructs and their interrelationships from the ‘insider view’ to then develop a questionnaire and test it using confirmatory factor analysis), (3) as a basis for co-constructing scales and questionnaires with the populations/groups researched (for example, through games, discussion, and participatory methods used in street situations), and (4) to further examine findings of studies or interventions with unexpected findings/results (for example, I tried to understand why innovation projects that were effective in other communities in Portugal were not achieving the intended results in a specific community, especially with Romani youth, despite continuous and sustained funding for community projects delivered in that community). In my case, I am using the previous SSW action-research project to generate hypotheses and inform project design: the experiences and data collected in SSW with Romani children/youth are being used to shape the design and decide the measures to collect in a prospective longitudinal study; furthermore, the study is being designed collaboratively with local stakeholders and the community based on SSW insights. SSW as a Data Construction and Production Technique Once established in the public space and recognised as an asset to the participants/group— and the wider community—the street educator/worker has spent considerable time witnessing, experiencing, and living those specific social milieus. In doing so, street workers often embody (Bordieu, 2002, pp.283–284) the sociocultural experiences, symbols, interactions, codes, and rituals they engage in to serve participants. This embodiment of street work experiences has been reported in ethnographic or self-ethnographic work involving outreach in some capacity (Holmes, 2013; hooks, 1994). For example, Lynch, Howes and French (2020) reported on how sensory experiences inscribed on the researchers’ bodies became fundamental for the understanding of the casino landscape. In our work (Lobo-Dos-Santos et al., 2021), we reflected on the importance of the street workers’ bodies as places of emission and reception of sociocultural signals in the educative process. In some instances (such as school meetings with teachers), our bodies became the manifest expression of Romani youth/families’ experiences, rights, and resistance when those were being systematically silenced. What we lived with them in the streets was registered in our bodies in a form of experiential knowledge that only the body could retell, especially via non-written forms. Due to our allegiances with Romani families, sometimes we also faced silencing, exclusion, and dismissal of our views when engaging with school institutional representatives; the sensory experiences associated with those moments were key in promoting the understanding of where and how discrimination and bias were activated in the micro-interactions of school daily life. This is especially true when the oppression and social exclusion the participants face are also systematically experienced by the worker as a result of the intervention process. In that case, the workers can carry in their bodies the marks of inequality and exclusion, being able to understand it in a way that is different from externally analysing data (note, however, that I am not arguing that the worker will become a part of the disadvantaged groups/identities). Through the recurrent practice of SSW, the embodiment of street/public experiences is

Social street work: intervention method as a research method in sensitive research?  109 generated; hence, the street worker becomes the data. Restated, beyond an accurate description of observations deployed in field notes (instrumental to the worker), the reflections, perceptions, ideas, implicit theories and feelings that express embodied experiences are—in their own right—data. These data are of a different level and nature compared to the descriptive field notes. Furthermore, they invoke, simultaneously, a more distal type of sensory experience regarding street events and situations, and a more proximal sensory experience regarding the street worker’s embodiment. In summary, the street workers’ bodies, in which public experiences with the participants, community and groups of participants become inscribed and reverberate, allow for the ‘thick description’ (Geertz, 2003) of social life, provided that the social street workers’ bodies are accepted as a legitimate source of knowledge. As a result, another layer of data to be examined is available, which will be mostly qualitative in nature but can be converted into quantitative data. Visual outputs and visual documents are part of such data, including drawings, maps, schemes, figures, caricatures, poems, and diagrams. In my work, drawings, caricatures, and reflections based on the embodiment of the ‘unfair’ experiences I had with Romani pupils/families, both inside and outside the school walls, were part of the data produced (Lobo-Dos-Santos, 2020b) that was later analysed (Lobo-Dos-Santos & Montenegro, 2023), together with other pieces of data, including field notes and quantitative data. SSW as Part of Study Procedures Finally, SSW can be used to complement and fortify studies by incorporating regular procedures. This can be done either by hiring a team for SSW or, perhaps even better, by partnering with street workers intervening in the contexts studied. I will provide two illustrations: (1) SSW to conduct process evaluations, and (2) SSW as a strategy to avoid attrition in longitudinal research. Process evaluations Social interventions, psychosocial programmes or innovative policies aimed at improving the lives of excluded population groups, such as the Romani people, need to be evaluated for efficacy. In doing so, (quasi)experimental designs allow us to confidently make attributions of causality in linking programmes and outcomes (Murnane & Willett, 2010). It is also important to provide process evaluations (Berry, 2009)—that is, evaluations that show if the programme input (for example, sex education, psychotherapy using CBT or culturally responsive mentoring) was actually implemented (programme integrity) in the intended dosage, with the intended way of operating, and with participant adherence. SSW is a privileged approach to conducting process evaluations since it accompanies participants and groups over time and across systems. Hence, SSW can provide a very rich, proximal account of programme inputs and outputs, particularly using a qualitative approach. This approach can be used in evaluating future interventions and initiatives developed with Romani communities. Attrition in longitudinal research Scholars acquainted with developmental-longitudinal research will be familiar with the biggest challenge associated with it—attrition (Menard, 2015; Wikström et al., 2012). Developmentallongitudinal research traditionally involves at least three ‘waves’ of data collection, with a

110  Handbook of sensitive research in the social sciences minimum time lapse of six months between them. Attrition is the phenomenon of participants dropping out of the study across data collection waves. Despite the varying attrition rates in longitudinal studies and strategies developed to overcome them, one common theme in the literature is that research teams almost inevitably resort to SSW methodologies. For instance, the use of SSW techniques and approaches seems almost inevitable when participants are truant or criminally involved youth (Dooley, 2019). Tracking down participants, searching (A. R. Piquero, personal communication, 29 March 2024), and identifying them at every new wave of data collection is part of the study procedures. This involves reaching out, entering communities, building relationships, spreading the word, signaling the presence of the researcher without causing harm to participants, and so forth. This process is difficult, costly, and takes time—it involves the same attitude of ‘relentless outreach’ (Baldwin & Zeira, 2017) used for intervention purposes in SSW. In the Pathways to Desistance Study, having staff members who persistently outreached to the adjudicated youth enrolled in the sample, while maintaining a consistently respectful relationship with them (as well as with relevant others), was the driving force in keeping attrition low (see Schubert et al., 2004, pp.244–247). In summary, in developmental-longitudinal studies, researchers resort to SSW to overcome attrition. Perhaps developing partnerships with existing outreach workers when conducting such studies may contribute to reducing attrition in longitudinal designs. This is also a strategy I am planning to use in research projects being carried out with Romani people in Northern Portugal, both by hiring intercultural mediators and by activating previously established contacts with local street educators and grassroots organisations.

CONCLUSION AND FUTURE DIRECTIONS SSW is characterised by systematic outreach to socially excluded individuals or groups of individuals in the public space to promote empowerment and emancipation. Conceptual debates are still ongoing, and no universal definition of SSW is found in the literature. Despite some (quasi)experimental evidence of positive outcomes as a result of SSW interventions, it is not clear whether SSW is universally effective. In this chapter, it was argued that SSW can be used as a research method beyond its traditional conception as a social, educative, or harm-reduction intervention methodology. Based on epistemological criteria, a logical exercise was conducted to assess whether SSW is empirical, systematic, driven by coherent rationales, and intersubjective. It was concluded that SSW can be a research method (but not necessarily is!). Furthermore, it was shown how SSW can be advantageous for social science research, at least in five different avenues. First, SSW can be a definitive feature of a research design. Second, it can be used as a data collection technology. Third, it seems a valuable tool to be incorporated within time-intensive within-unit-ofanalysis studies. Fourth, it was discussed how street workers often embody street experiences and, therefore, become reliable and valid sources of data themselves, often through visual outputs. Last but not least, SSW techniques offer a valuable addition to regular study procedures, especially in longitudinal research designs to address attrition challenges. To provide illustrations for the five different avenues discussed, it was described how SSW applied to my own previous, present, and future research (particularly, action-research) with Romani people from Northern Portugal. Moreover, specific pieces of literature from several disciplines were reviewed to support the arguments developed.

Social street work: intervention method as a research method in sensitive research?  111 Hence, three main conclusions can be drawn: (1) researchers are encouraged to plan to implement SSW or to partner with SSW teams in order to advance research and knowledge in sensitive contexts, particularly researching hard-to-reach, hidden, or vulnerable groups and individuals; (2) street workers should plan to orient their intervention projects and programmes to research, making their practice consciously informed by an action-research model, which is useful in supporting their intervention inputs and/or theory, as well as evaluating intervention efficacy and effectiveness; (3) street workers, social scientists, and the so-called ‘pracademics’ are encouraged to inspect the mutual benefits of considering SSW as both a research and intervention method and to develop innovative projects and practices in sensitive contexts based on the methodological considerations put forward in this chapter. SSW bears the potential of connecting the highest of the academic ivory towers and the most abstract of theories with the most immediate and minimal request for help from a human being in need. It is very rare to find a method that harmoniously mingles intellectuality (scientific knowledge) with practicality and creativity (action-based social problem-solving). In this chapter, I tried to draw the initial path through which SSW can become the tool for such a prolific integration. People embedded in sensitive contexts and situations, experiencing vulnerability, discrimination and exclusion, may benefit greatly from such an endeavour.

ACKNOWLEDGEMENTS The author was supported by a ‘la Caixa’ Foundation fellowship (LCF/BQ/EU22/11930011) to fund his doctoral degree studies while working on this book chapter. I would like to show gratitude to Alex Workman for opening up the possibility of my contribution to this book, as well as for reviewing an earlier draft of this chapter. I would also like to thank Oluwatosin Leshi (‘Tosin’) for his immense support in pushing this work forward.

NOTE 1. Public spaces are broadly defined here—private spaces can become public (living rooms), and public spaces might often be privatised (street segments).

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114  Handbook of sensitive research in the social sciences Narayan, K. (1993). How native is a “native” anthropologist?. American anthropologist, 95(3), 671–686. Olds, D. L. (2006). The nurse–family partnership: An evidence-based preventive intervention. Infant Mental Health Journal, 27(1), 5–25. https://doi​.org​/10​.1002​/imhj​.20077. Park, R. E. (2019 [1925]). Community organization and juvenile delinquency. In R. E. Park & E. W. Burguess (eds), The city (pp.99–112). Chicago: The University of Chicago Press. Popper, K. R. (1959). The logic of scientific discovery. New York: Basic Books, Inc. Rauwerdink‐Nijland, E., Dries, L., Metz, J., Verhoeff, A., & Wolf, J. (2023). Lessons from the field: Caregivers supporting marginalized people receiving social service support from street outreach workers. Family Relations, 72(4), 1790–1805. https://doi​.org​/10​.1111​/fare​.12744. Ross, M. C., Ochoa, E. M., & Papachristos, A. V. (2023). Evaluating the impact of a street outreach intervention on participant involvement in gun violence. Proceedings of the National Academy of Sciences, 120(46), e2300327120. https://doi​.org​/10​.1073​/pnas​.2300327120. Roy, K. M. & In Kwon, Y. (2007). Qualitative insights and methodological challenges: Next steps in research on low-income fathering. Applied Development Science, 11(4), 234–238. https://doi​.org​/10​ .1080​/10888690701762142. Schubert, C. A., Mulvey, E. P., Steinberg, L., Cauffman, E., Losoya, S. H., Hecker, T., Chassin, L., & Knight, G. P. (2004). Operational lessons from the Pathways to Desistance Project. Youth Violence and Juvenile Justice, 2(3), 237–255. https://doi​.org​/10​.1177​/1541204004265875. Segulin, A. M., Santos, H. L., Panušková, K., Rakovec, K., Vodeb, N. A., de Groot, N., Spruk, T. & Pavlin, V. (2019). Theoretical basis of street-based youth work. Ljubljana: Zavod Bob. Segulin, A. M., Šumberac, A., Verschoor, C., Janatová, H., Santos, H. L., Kopic, J., Batelić, J., Lashley, J., Rakovec, K., Janzuk, M., Knapp, M., Beneš, M., Fraga, M., Resende, M., Vodeb, N. A., van Omno, N., de Groot, N., tan Napel, P., Van Goethem, R.… & Pavlin, V. (2021). Magic wand: Activities for street-based youth work. Ljubljana: Zavod Bob. Serres, M. (1972). Hermès II: L’interférence. Paris: Les Éditions De Minuit. Shaw, C. R. (1930). The jack-roller: a delinquent boy’s own story. Chicago: The University of Chicago Press. StreetSmart. Street Smart Impact, accessed 23 September 2024 at https://www​.street​-smart​.be​/products​ /streetsmart​-impact​?lang​=en. Suarez-Balcazar, Y., Balcazar, F., Miranda, D. E., Velazquez, T., Arcidiacono, C., & Garcia-Ramirez, M. (2022). Promoting justice through community-based research: International case studies. American Journal of Community Psychology, 69(3–4), 318–330. https://doi​.org​/10​.1002​/ajcp​.12584. Sweldens, R. (2021, 18–22 October). Introduction to StreetSmart: Innovative tools & methodologies for youth empowerment [Conference presentation]. Words from the Street: International Forum of Street Workers Network 2021, Brussels, Belgium. Vazsonyi, A. T (2023, 9 September). Roma versus non-Roma adolescents: Educational success, deviance, and victimization risk [Conference Presentation]. 27th Conference of the Interdisciplinary Research Centre on Crime, Justice and Security. Wikströ m, P. O., Oberwittler, D., Treiber, K., & Hardie, B. (2012). Breaking rules: the social and situational dynamics of young people’s urban crime (1st ed.). Oxford: Oxford University Press.

8. Your voice matters!—(unintended) exclusion practices in sensitive research and older people Katja A. Rießenberger, Barbara Barbosa Neves and Florian Fischer

INTRODUCTION So, it humbles - the process. It reminds me that the expectations are only a plan. It reveals the collaborative aspect of that encounter. That it’s beyond the research agenda. It’s a human encounter […].

(Quote from a co-design researcher in our study) Apparent in the literature on representation in qualitative research is that most publications focus on how to represent this research in the best way (see. Galman, 2009; Langer, 2016) and less so on the representation of research participants. In fact, the representation of qualitative research and the representation of participants are often used interchangeably to denote the same. Although strongly connected, we propose that these two forms of representation differ in terms of the overarching aims of the researcher: do researchers care mostly about qualitative research’s credibility within the research community (such as authenticity and truthfulness)? Or do they mainly intend to amplify the voices of research participants and empower them in the process? While we acknowledge the importance of the first aim, we would like to focus this chapter on the latter. The ethics of representation and its implications are essential topics for engagement and discussion within sensitive qualitative research. In many studies, researchers are either satisfied with including research participants in their studies solely as research ‘subjects’ or are forced to do so due to existing funding structures in research. This chapter contends that the sole inclusion of study participants in qualitative research does not mean that their voices are adequately represented. But what do we consider their ‘voice’ to be? Who defines that, and how? What power dynamics are at play—even in participatory approaches that are tasked with involving participants as partners and not merely research ‘subjects’? And how do we address these dynamics while trying to represent their voices? It is to these critical questions that we first turn our attention, providing the necessary context to discuss the specific issues that we have encountered in our research practice. According to Burton Blatt (1981, p.184), “a person is defined by the stories he [she, they] tells about himself [herself, themself] as well as by the stories that are told about him [her, them].” This resonates with the conception that “voice is the right and the ability to make oneself heard and to have one’s experiences and perspectives available to others; to participate in the construction of the self and to decide how to represent that self to others” (Ashby, 2011, n.p.). Having a voice means having power over your own narrative. But even when trying to represent the voices of research participants through, for example, participatory approaches, power imbalances and privileges are visible and re-enacted, regardless of the researcher’s intentions (Ashby, 2011). While readers of qualitative research gain insights into the lives of individuals 115

116  Handbook of sensitive research in the social sciences they would otherwise be unfamiliar with, the narration of the research participants’ lives usually takes place through the researcher’s interpretative lens. As such, research participants hardly ever get the chance to share their stories themselves and the scope of their involvement is decided by the researcher conceptualising the study (Ashby, 2011). Although participatory methods claim to counteract these power imbalances, they are frequently enacted through emergent social processes, reflected in participants’ expressions of their experiences, emotions, motives, and expectations (Light & Akama, 2012). For this, we must move away from a mindset of ‘giving voice’ to marginalised groups, as if these groups have not had a voice to begin with. It is not merely about ‘giving voice’, but also about ‘listening to this voice’—and integrating this voice within research projects and their outcomes. We concur with Ashby’s point (2011, n.p.) that “we need to ‘facilitate voice and agency’ further levelling the researcher/ researched hierarchy”. This is especially important in sensitive research, which inter alia includes research with vulnerable populations who are either not directly represented at all or are misrepresented, such as children or older adults, people with disabilities, and ethnic or racial minorities. In this chapter, we aim to make these issues more tangible by focusing on case studies with older people in the domain of technology design, where they are usually marginalised and excluded, especially when considered frail (Neves et al., 2019). By showcasing specific cases of sensitive research—and reflecting on our own shortcomings—we illustrate how to represent better and amplify the voices of research participants.

HETEROGENEITY AND VULNERABILITY OF OLD AGE With sensitive research being defined as such due to the type of research participant involved and/or the topic itself, we want to take a closer look at these two aspects in the context of studies with older people in general and with older people who are recipients of formal or institutionalised care more closely. As it becomes more generally accepted that old age or ageing is highly heterogeneous, the literature also embraces that individual characteristics (e.g., health behaviours, sociodemographics, genetics) and social as well as environmental factors (e.g., working conditions, housing, transportation) impact the ageing process (Hunsaker et al., 2019). Individual variations are already visible before birth due to differences in genetic inheritance, as well as varying environmental exposures, maternal lifestyle, and behaviours throughout foetal growth. The degree of variety then increases substantially with age because of numerous elements, both innate and external to the individual (Ferrucci & Kuchel, 2021). According to Jaul and Barron (2021), the increasing heterogeneity associated with old age can be divided into four domains: (1) normative physiological changes; (2) diseases becoming more prevalent in older age and contributing to functional limitations or disability; (3) emotional and psychological changes in older age; and (4) social and environmental changes. This creates an increasingly diverse group of older people (Ferrucci & Kuchel, 2021) who interact within their context and with technology in profoundly different ways (Hunsaker et al., 2019). While some older adults are chronically ill, disabled, or frail, many people over the age of 80 continue to work or travel (Jaul & Barron, 2021). However, research and media frequently present ageing negatively as a deficit, stigmatising older people as a vulnerable, homogenous group. Similarly, there are many misconceptions regarding the online behaviour of older people, who are portrayed as perpetually

Your voice matters!—(unintended) exclusion practices in research and older people  117 technologically illiterate or technophobic (Hunsaker et al., 2019). Most observational or interventional studies on ageing published to date primarily emphasise average differences between groups rather than delving into the diverse characteristics within the older population. While these individuals may share only the commonality of age, their lifestyles and circumstances can vary significantly (Ferrucci & Kuchel, 2021). As older adults are often perceived and defined as part of a vulnerable population, we follow a strength-based approach to ageing, which considers its opportunities and benefits rather than a language of deficit and cost. This is essential if we are to stop reproducing a marginalising perspective of this group—especially in settings where many of the vulnerabilities faced by older people are bestowed upon them as a result of their structural contexts, like societal views on ageing (Gu & Dupre, 2021; Langmann & Weßel, 2023). With this societal vulnerability in mind, we draw upon Quest and Marco’s (2003) arguments, which underline that people are made vulnerable or may manifest themselves as needing protection or lacking autonomy due to their context, such as physical or cognitive restraints or living in a hard-toaccess area (Haider, 2022; see also Chapter 1 in this volume). A person is then, in turn, perceived as vulnerable if they: 1 . 2. 3. 4. 5. 6. 7. 8. 9.

cannot decide for themselves whether or not they want to participate in certain activities; make decisions due to their position in hierarchically ordered institutions; are socially disadvantaged: have cognitive impairments or are mentally distressed; lack autonomy and have limited access to services; are stigmatised; have particular health conditions associated with stigmas; are excluded from the main spheres of public and economic life or are in environments that constrain freedom and restrict access to most resources (Haider, 2022).

Although it may help to distinguish whether or not a person or a population/group may be vulnerable, individuals may not feel vulnerable, even when they identify with one or more of the above-mentioned characteristics. As previously noted, vulnerability is context-dependent (Haider, 2022). However, Latour’s (2005) critique of the usage of ‘context,’ as well as Clarke et al.’s (2018) framing of it as that which surrounds something without being part of it, are relevant to extend understandings of contexts of vulnerability. As concluded by Guner (2023, p.43), ‘context seems to portray social as static background’. The notion of ‘situatedness’ seems, therefore, an apt alternative to context. Situatedness, which includes the idea of co-constitutiveness (when two or more components work together to create or constitute something), is defined as “a concept that simultaneously surrounds something, while being part of it” (Guner, 2023, p.43). In terms of vulnerability in sensitive research, we contend that the move away from context to situatedness allows us to capture both the dynamic nature and the relational aspects of vulnerability. An older person may not be vulnerable, but an older person finding themselves in a political, social, or regional situatedness that is intolerant, under- or misinformed, and ignorant regarding the challenges arising with old age acquires a layer of vulnerability (see Chapter 32). In turn, a well-connected, well-off, and/or well-informed older person in that same situatedness might overcome some of the consequences of such intolerance and invisibility. Moreover,

118  Handbook of sensitive research in the social sciences an older person without a supportive social network, with no or reduced access to old agerelated information (e.g., due to lack of digital literacy, connections, rural living environment), or with minimal monetary means, acquires another layer of vulnerability. Vulnerability is not a binary category of either being vulnerable or not (Haider, 2022). Instead, it is highly influenced by a person’s situatedness. The way people carry one or more of the above-mentioned characteristics of vulnerability is situated. How individuals and groups interact with their environment, and how they cope with the challenges posed on them, may have an immense impact on whether they are both perceived as vulnerable and identify/feel vulnerable (or not) in their own understanding (Myall et al., 2009). Vulnerability in research is also associated with ‘hard-to-reach’ and ‘hidden’ populations, as they are seen as invisible, silent groups in society (Haider, 2022; see also Chapter 1). That older adults can be rendered invisible within our society, especially when also considering other marginalising factors, such as gender, ethnicity, sexual identity, and illiteracy, has been shown in several qualitative studies (see Menezes et al., 2023; Westwood, 2023). For conducting sensitive research, Haider (2022, p.6) proposed that researchers “must carefully explore the interactions between an individual’s characteristics, their situation, their environment and the nature of the study in order to decide whether and how they should approach their project sensitively”. Thus, another challenge that this chapter seeks to address is how sensitive research can be conducted in a way that includes older adults and affirms their expertise and capabilities within their heterogeneity and intersectionality (defined further below), rather than sliding into tokenistic practice by targeting them as marginalised groups, potentially reinforcing this marginalisation. In this chapter, we also cover later life care as a sensitive research topic, as the core of sensitive research is emotion (Mallon et al., 2020). With images of care implicitly or directly linked to an (expected) loss of autonomy and oftentimes feelings of being discarded by society or their respective families, care is a highly emotionally charged topic—especially in old age (Walsh et al., 2017). Care settings can then serve as fruitful examples to discuss representational issues in sensitive research.

PARTICIPATORY DESIGN AND POWER-IMBALANCES IN REPRESENTING OLDER ADULTS’ VOICES When reflecting upon the challenges and sensitivities in technology design with and for older adults, it is pivotal for technology developers and researchers to identify the ways in which products may be problematic prior to implementing changes to their design (Rießenberger & Fischer, 2023). Introducing participatory design is a potential strategy to address the digital marginalisation of technology users while attempting to address age-related concerns. Aiming to increase the likelihood of digital inclusion for groups like the 65+ population, whose heterogeneities often go unnoticed and whose potential vulnerabilities are overused, participatory design aims to democratically involve marginalised groups in the innovation processes of digital technologies (Björgvinsson et al., 2010). Participation in general, and participatory design in particular, can, therefore, be considered a form of redistribution of power (Arnstein, 1969). Power to decide what and how change is introduced, such as whether those participating would prefer a different user interface, or whether they would even like a technical solution to begin with.

Your voice matters!—(unintended) exclusion practices in research and older people  119 Acknowledging the existing and practised variety of understandings, forms, and levels of participation, we must recognise the “critical difference between going through the empty ritual of participation and having the real power needed to affect the outcome of the process” (Arnstein, 1969, p.216). Thus, participation should be approached as a process and not just an outcome (Pincock & Jones, 2020) in order to include a diversity of voices in the development of technologies and to allow older people to express themselves on their terms. To ensure that under-represented voices are incorporated, meaningful participation must pay attention to the aforementioned tensions in power relations. The voices of some older adults, especially those with intersecting categories of difference, are often ignored or hidden inside prevailing narratives. One example is described in the literature, where a study’s initial objective was to explore age and technology using participatory design methods in a nursing home, but the contributions from older residents were later excluded from the dataset and technological innovations, as living lab managers contended that engaging with residents suffering from dementia or physical infirmities was too challenging (Kanstrup & Bygholm, 2019). Merely attempting to interact with seniors as a collective can fail to recognise certain heterogeneities, limiting the representation of specific perspectives and experiences. By bringing attention to power imbalances and politicising data collection procedures, participatory methods in research and technology development can assist in addressing the relational and structural marginalisation of groups of people whose voices are often disregarded or misrepresented as described in the example above (Pincock & Jones, 2020; Rießenberger & Fischer, 2023). As participatory methods constitute an exercise of power (Pincock & Jones, 2020), it is particularly important to critically reflect on the power that researchers/facilitators of participatory design hold. That is, when, how, and to what extent older adults are allowed, but also willing and able, to (actively) take part in the participatory design process; or in contrast, where their voices are deemed too complicated or unimportant. Reflecting on the power dynamics at work in determining who can participate and under what conditions is key to understanding older adults’ agency and capabilities. As Nespor and Barylske (1991, p.806) put it, knowledge—including knowledge about technology development and usage—is not merely material extracted from individual experiences. It is rather a co-constructed social representation, which is “not just a matter of epistemology or method, but a matter of power”. Although several approaches, such as participatory design, have been presented to address and alter the power asymmetry inherent in both representing others and being represented, the idea of substituting numerous voices for one remains prevalent. Sensitive research, as well as feminist and critical methodologies, support the mitigation of this power imbalance through “reciprocity, collaboration, shared reflection, and interpretive acknowledgement of how phenomena are situated within the context of specific groups’ cultural norms and knowledge” (Galman, 2009, p.198). By reflecting on specific examples in participatory design processes of gerontechnology development, we next share our experiences of how we aimed to holistically represent older adults’ voices, how we failed, and what we learned from these experiences.

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CATEGORIES OF DIFFERENCE AND SENSITIVE RESEARCH IN OLD AGE—EXAMPLES FROM THE FIELD: CHALLENGES IN FOSTERING REPRESENTATION When looking at categories of difference while taking the heterogeneity of old age into account, it is necessary to take a closer look at intersectionality. Intersectionality was first introduced by Kimberlé Crenshaw (1991) and refers to a lens for studying “the relationships among multiple dimensions and modalities of social relationships and subject formations” (McCall, 2005, p.1771). Intersectional approaches are, therefore, based on the assumption that socially and culturally constructed categories such as gender, race and ethnicity, class, and age do not act independently of one another but interact on multiple levels (see also Chapters 8, 26 & 29). Westwood (2023) offers the example of older women experiencing prejudice and discrimination at the intersection of both ageism and sexism; for instance, labour-market discrimination, unpaid care work, or the general invisibility of older women in our society. This indicates their greater societal devaluation and economic disadvantage in comparison to both younger women and older men. The situation becomes more intricate due to their interactions with other social categories of difference, including disability, race and ethnicity, socio-economic status, and their various pairings (Westwood, 2023). When doing sensitive research, it is crucial to consider these intricacies during the design, execution, analysis, and dissemination stages. This will ensure that the study has a meaningful influence on likely vulnerable populations. While there is sufficient content regarding gender aspects and technology innovation and development (see Ernst & Horwath, 2014; Ashcroft, 2020), a critical reflection of this research area shows that most studies on gender and technology innovation and development remain unaware of other sociocultural categories of diversity, including class, race, disability, sexuality, and age (Oudshoorn, 2016; Levy, 1988). Although women have received attention, feminist concepts of voice as “a socially constructed concept that cannot be separated from experiences, emotions, and identity” (Mitchell, 2017, p.1) can also be extended to sensitive research, including other marginalised populations and their interaction with oppressive systems. The question of whether these structures are oppressive due to their intrinsic sexism, racism (including cultural racism), and ableism is of great importance (Ashby, 2011). As already mentioned, feminist concerns around power and voice are undeniably pertinent and valuable in this regard. Examining the case of technological development in relation to old age, we will explore research that focuses on the intersecting issues of gender/LGBTQ+, disability, race and ethnicity, and care as both a sensitive topic and a study field of exceptional sensitivity. Therefore, we will try to dissect how we can facilitate voice and agency in sensitive research. Since we support the claim that voice is discursively created through the process of research, we must acknowledge that we, as researchers, are not exempt from the influence of our own acquired prejudices, sexism, racism, and ableism (Ashby, 2011). For that reason, we critically reflect on our own images and practices to avoid further discrimination or the silencing of participants. Gender Issues in Co-Creation—Balancing Power and Safe Spaces During co-creation workshops, where technologies were created collaboratively with retired professionals in Switzerland, we handed out paper-based demographic data sheets, asking for participants’ information on age, employment (such as length, type of industry), as well

Your voice matters!—(unintended) exclusion practices in research and older people  121 as their gender category (m=man, w=woman, d=gender-diverse). We handed these out at the beginning of the workshops. During one of these times, we observed an unexpected reaction to the demographic data forms. While filling out the form, one male participant came to a halt at the question of his gender, with the options of m, w, and d. He went on an angry rant, cursing and questioning why researchers would include the ‘d’ for gender-diverse. As a team, we calmly tried to explain our reasoning, which only seemed to aggravate him. Shouting at the paper, he voiced his disbelief in us and society as a whole, and how things do not always change for the better. In the meantime, none of the other participants dared to speak up. Only when reminded that he did not need to fill out the form and that he could restrict his contribution at any time by simply handing us an empty sheet did he finally do so. Within the same co-creation workshop, it became apparent that some participants were more reticent, while others appeared to have a more assertive demeanor. Although the more vocal individuals took up most of the speaking time, it was quite balanced with regard to gender differences. Only when it came to who got interrupted by whom, were we able to observe that men were rarely interrupted, and when they were, they kept finishing their point before handing it over to the person interrupting them. However, when an assertive female participant was continuously interrupted by different male participants and applied the same strategy of finishing her point before handing it over to the person interrupting her, the general reaction changed. It was obvious that this was not the expected reaction, and the participant interrupting her kept talking, starting to slowly but steadily increase his volume to make himself louder than her. In turn, the woman did the same, also increasing her volume. What felt like several minutes was only a few seconds, and by the time they had hit this point, the moderator had intervened and supported the woman in finishing her point while simultaneously asking the man interrupting to wait for his turn. Most participants remained in a passive state and did not interfere. To ‘find voices’ for women was one of the feminist movement’s first and primary objectives (DeVault, 1999). Early feminists contended that women’s viewpoints were being overlooked and excluded in research, prompting them to initiate efforts to rectify this (Atkinson et al., 2003). Making women and people who identify as diverse feel invisible is not a new phenomenon. Furthermore, gender invisibility seems to exacerbate with an increase in age. Multiple studies conducted in the last decade have suggested that older women are not only especially subject to societal devaluation but also experience a sense of invisibility. In fact, loss of visibility is central to older women’s experience of ageing, with hardly any difference concerning lesbian or bisexual women (Westwood, 2023). Westwood (2023, p.567) even stated that “the overarching message from the [older] women’s narratives is that their experience is that they are either not seen at all or not seen for who they truly are and/or feel themselves to be”. Their loss of visibility does not only entail not seeing themselves represented, but being fully ignored, misrepresented, and/or seen as ‘less than’ through infantilisation and disabling (Westwood, 2023). This gender invisibility and erasure, which occurs on both the macro- and micro-level, can undermine a person’s “equal place in society, socially, economically, and politically” (Westwood, 2023, p.559). The diminished social and cultural visibility and significance of older women is deeply rooted in sexism and intensified by ageism, with the latter contributing to and strengthening sexist norms and prejudices. This can be seen in both examples previously presented, where attempts were made to silence older women by interrupting them, or where people identifying as diverse may

122  Handbook of sensitive research in the social sciences have felt unsafe to stay in the workshop setting or disclose their gender identity due to another participant’s political views or discriminatory remarks. As mediators of public spaces through research activities, such as co-design workshops, it is our responsibility to intervene and use the power situationally given to us. It is not always easy to navigate this tension, and finding the right balance is a challenge for any researcher dedicated to empowering people to voice their different opinions, thoughts, and feelings. This experienced gendered ageism intersects with racism and ableism, which can mutually overlap with one another (Reygan et al., 2022). Hence, it is crucial to approach these issues with an intersectional lens to promote the recognition and inclusion not just of older women but specifically of those who carry other marginalising categories of difference. Disability and Accessibility Issues in Participatory Design Practices Historically, people with disabilities have been excluded and seen as anomalous in a culture that values able-bodied individuals. Similar to how feminist scholars examine topics from the perspective of gender inequality, these same ideas may guide our approach to research involving persons who have experienced oppression due to disability in an ableist society. However, in contrast to feminist approaches, it is frequently non-disabled researchers who conduct research with those who are perceived to have impairments. Despite critical disability studies growing as a response to this, it is still common practice (Ashby, 2011; Castrodale, 2017). This was the case in the following examples, which came from a participatory technology development project. Within this project, we aimed to modify a location-based game to meet the needs of older people. This game – originally developed for adolescents – is appbased and guides its participants in an interactive, real-world scavenger hunt through health and care offerings in their neighbourhood (Dadaczynski et al., 2021). In the first step, we used public media and contacted institutions as well as associations to spread information about a co-creative workshop and invite participants for field testing of the current version of the app. We asked the participants to form groups and try out the app. This required them to walk through the city in their groups, accompanied by researchers who observed these situations. One of the participants was a paraplegic older man who had difficulties with this task because of the city’s inaccessibility. So, his group decided to meet at a previously agreed meeting point which the paraplegic man was able to access with technical support. However, it turned out that the group did not wait for him. It was only by chance that another group met him and immediately let him join them. He later reported that he simply wanted to fetch his wheelchair’s electric motor from his car to be able to follow his previous group more easily. He either did not seem to mind any of it, or he may have just normalised the situation and started conversing with the other group members, who were happy to include him. The second case was related to the same project but another venue. Once a year, a major business fair and local festival (Allgäuer Festwoche) takes place in the south of Germany. We were there to conduct research to collect further insights to improve the app and also invited participants from our former workshop to visit our booth. Since the fair is advertised as being easily accessible, we, as an able-bodied team, expected this would not be a problem. Unfortunately, the paraplegic man from the case described beforehand had to notify us that he could not visit the booth due to the fair’s inaccessibility issues. Only later, at a different

Your voice matters!—(unintended) exclusion practices in research and older people  123 workshop in our office building, he confided about the challenges of going to this specific event and shared his frustration with the fair organisers and the city’s hypocrisy. As vulnerability is context-dependent, disability is social by nature. The interaction between impaired bodies and our ableist society renders disability visible, thereby establishing (disability-related) structures, institutions, practices, and images (Goodley, 2013; Pincock & Jones, 2020). Critical reflection on disability spotlights the heterogeneity of disability as well as the intersectionality of the human body with its situatedness within our ableist societal structures, including research and technology development practices (Pincock & Jones, 2020). Although studies have been conducted on this, there is still a lack of research on the perspectives of those with disabilities, especially when reaching an older age. Frequently, narratives concerning individuals with disabilities tend to prioritise the perspective of professionals rather than the views of the individuals themselves (Ashby, 2011). For us, as researchers, especially in sensitive research, this means that we must adapt our research methodologies and practices to avoid a “tokenistic inclusion of marginalised groups without actually ensuring their ‘voices’ are able to emerge” and ensure meaningful participation for them (Pincock & Jones, 2020, p.4). In the above-mentioned examples, this would have included either directing him towards the support volunteers set in place by the organisers of the fair and making sure his participation was as accessible as possible or asking him the same question on the phone that we asked the other participants in person at the fair to ensure his voice could be captured. This potential answer to his challenges of accessibility would nonetheless once again exclude him from the opportunity to be there in person. For the co-creative workshop, it would have required us to advertise in advance that it would not just be an interactive testing of an app that entails a scavenger hunt, but that it would take place outdoors in the city. Preparing the small-group observers in advance meant that despite the decided-upon passivity, they must also use their power consciously when they feel like a person is being put in a vulnerable position—in this case by other participants actively or accidentally excluding them by not remaining at the station where they had agreed to meet. Another solution could have been to communicate this agreement with all small-group leaders and make sure at least one person remained at the station until all members arrived. It needs to be pointed out that these potential strategies would not be sufficient for other types of disabilities and that it takes a continuous effort to include as many voices as possible. Ethnicity and Race—Self-Silencing and Getting Silenced in Public Spaces Another co-design workshop in the south of Germany was held as part of a larger event commemorating the International Day of Older Persons. In this workshop, we discussed prevention and care with a group of six people we had not met before. The participatory aspect of this session was not known to those who were interested in the topic until they had received an introduction from one of our team members. During the discussions, we noticed that two older women who had arrived together and seemed to be related were noticeably quiet. Halfway through the workshop, one of the two women started to speak up. She spoke German fluently with an accent, indicating she was not a native speaker. She seemed to be visibly trying to hide her accent. After she had made two comments at different times without the other participants reacting or responding as they had done previously, she fell silent again. This observation serves as an example of how people with culturally and linguistically diverse

124  Handbook of sensitive research in the social sciences backgrounds may both practice self-silencing in public spaces and be silenced by the public in those spaces. Wanka et al. (2019) described in an Austrian study that 85 per cent of older immigrants reported having been discriminated against due to their ethnicity. This shows that discrimination based on older adults’ migration background is prevalent in our society, despite older adults becoming increasingly ethnically diverse (Wanka et al., 2019). The term ‘self-silencing’ was first coined by Dana Jack (1991), and is defined as the internalisation of social expectations that lead women to silence their feelings, thoughts, and actions to shape and maintain their social relationships and to feel accepted and safe. Following a social constructivist understanding of gender as co-constructed and situational, we want to extend this phenomenon to other social categories of difference, namely age and race or ethnic diversity. In our case, we encountered two white women, over the age of 65 years, who also had a migratory past that they seemed to wish to disguise. Using an intersectional lens, all of these factors raised the likelihood of vulnerability in our society, and consequently in our co-design workshop, which took place in a public space. It furthermore showed how closely linked getting silenced by others and self-silencing are. As a moderator of such workshops, it can be challenging to find the right balance between encouraging more reserved people to speak while also not exposing them. When working with people of cultural and linguistic diversity, it is even more important to ensure representation of their voices and apply sufficient sensitivity to avoid enhancing discomfort or exclusion. This example showcases that it is not just necessary to keep this in mind during recruiting or while conducting research specifically targeted at racial or ethnic minorities, but also in public spaces such as the one we had found ourselves in. Without intending to do so, we may have caught these two women off guard with an unexpected interactive format, where they would be more publicly visible and subject to social scrutiny.

LET’S TALK ABOUT CARE-AVOIDANCE TENDENCIES IN OPEN SPACES In several gerontechnology projects, we observed that the terms ‘care’ and ‘digitalisation’ are both associated with reservation and even some suspicion. Such reservation appears to be even more nuanced when the terms are combined. For example, visitors to a business fair observing these headlines at our booth either expected information on care robots or immediately emphasised that care support requires human attention and cannot or must not be replaced by digitalisation. These experiences indicate that the way in which care is communicated in society—and in such open spaces like a business fair—leads to challenges: a deficit-orientated approach to older age and reservations about digitalisation in general seem to reinforce uncertainties and concerns. Changing how visitors were approached and using positive narratives such as ‘health in old age’ served as a door opener and revealed a greater willingness to engage in dialogue. People seemed to avoid talking about later life care or the need for care. This is interesting, since concerns and fears about care (dependency) are an impeding factor to research with older adults on topics related to care. Linking care to digitalisation, which is anticipated as artificial, non-human and non-empathetic, makes it even more sensitive. This is not only the case for artificial intelligence, where empathy and accountability are currently much-debated issues (Srinivasan & González, 2022). It also holds true for more or

Your voice matters!—(unintended) exclusion practices in research and older people  125 less ‘simple’ digital solutions (such as smart home technologies), which are integrated into the homes of older people who fear a loss of autonomy and dignity (Endter et al., 2023). Avoidance tendencies for engaging in topics concerned with care and digitalisation are visible among people with and without personal experiences in this regard. In order to protect themselves from negative feelings, many people suppress the thought of needing care. One statement frequently made by various participants in co-creation activities was: “Elderly care does not affect me”. This is linked to an illusion of control, as many people tend to assess their state of health too optimistically or initially trivialise health restrictions and underestimate the risk of needing care. Even at an advanced age, many people do not see the need to deal with the issue. In their view, it “always affects others” or “the onset of the need for care is – hopefully – still far down the road”. A different reaction could be observed when conversing with people who had already experienced caring for relatives. Many people directly opined that they were not willing to talk about it. Others (almost) started crying when they began sharing their experiences of the informal care of a loved one, which made the sensitivity of this topic even more evident. Therefore, emotions and different ways of dealing with stress and anxiety need to be considered every step of the way when researching sensitive topics such as care. In summary, establishing and maintaining clear and transparent communication with research participants is paramount in the context of sensitive research endeavours. Sensitive research, often involving topics such as personal health information, cultural practices, or socio-political contexts, demands heightened ethical awareness and commitment to participant welfare. Adequate communication serves as a linchpin in promoting a partnership between researchers and participants, ensuring informed consent, and engendering a sense of trust and reciprocity. The experiences described above highlight the importance of empathetic and cautious communication concerning care dependency. In addition, timely and comprehensive information-sharing regarding the research objectives, methods, potential risks, and benefits becomes essential to empower participants in sensitive research. Co-design with Frail Older People in Care Homes and Issues of Representation Another case study expands our discussion of participation and representation. Chris, in his 80s, lived in a care home in Toronto. He missed daily contact with his son and his family in Canada and China. He was part of a project co-designing a communication app with older people experiencing prolonged loneliness. During the project, participants were adamant that they only wanted to interact with family and friends. The tool was thus designed to focus on existing social ties, privileging the relationships they already had in place. However, for Chris, the tool ended up being a reminder of his loneliness. His son and his family did not respond to the messages he sent them via the app. At the end of the study, Chris told us in an interview that he did not need the app after all: “I’m just waiting for my own funeral. My birthday has just passed, just a few days ago”. This vignette resulted from a project on the co-design and co-evaluation of technologies with/for frail older people living in care (nursing) homes and alone in the community (Neves et al., 2019; Neves et al., 2022). It included a novel communication app and existing digital technologies such as tablets and social media. All aimed to understand the role of diverse technologies in addressing loneliness in later life, by focusing on their benefits and potential harms. Loneliness refers to a lack of meaningful companionship, and it is now a prominent public issue in most industrialised countries due to its deleterious effects on the health and

126  Handbook of sensitive research in the social sciences quality of life of older people (Neves et al., 2023). In addition to the emotional suffering that loneliness causes due to the feelings of rejection and abandonment that it elicits among older people, it increases the risk of cardiovascular issues and dementia (Sutin et al., 2020; Teshale et al., 2023). While loneliness is not a universal experience in later life, two groups are more likely to experience prolonged loneliness: older people living in sensitive settings like care homes as well as those living alone in the community while dealing with health and social vulnerabilities that limit their interactions (Gardiner et al., 2020; Neves et al., 2022). Loneliness has become a critical gerontechnology topic because new technologies are often positioned as solutions to alleviate and combat the phenomenon by creating opportunities for social connectedness (Neves et al., 2021). Yet, our research has shown that the impact of technology on loneliness depends on various personal, social and technical contexts (Neves, Franz et al., 2019; Neves et al., 2021, 2022). For example, our qualitative research based on semi-structured interviews and diaries written by our participants shows that technology can connect older people, helping address feelings of loneliness. However, our data also indicate that technology can make some participants more aware of their loneliness when family and friends do not interact with them via the technology we are testing or when the technology is used to replace in-person visits with quick videos or chats. Our qualitative research has offered us two important lessons in terms of methodological approaches in sensitive settings and with vulnerable populations. The first relates to the ethics of representation; the second to how we co-design technologies with/for older people. Firstly, older people tend to internalise the stigma of loneliness, linking it with personal failure or a sense of compromised identity. They already experience the intersecting stigmatisation of being old, frail, and dependent in a society that exhorts youthfulness, able-bodiedness and independence. This means that most participants prefer to suffer in silence, not disclosing their loneliness to family, friends, or carers (Neves et al., 2022; Neves, Sanders et al., 2019). Such a preference for self-silencing not only precludes a more active management of loneliness but also impacts the recruitment of older people living with loneliness, reinforcing the need to reflect on how they are represented in research projects. For instance, recruitment materials that emphasise loneliness or technology for lonely people can serve as a participation deterrent. Likewise, how we represent participants in publications and presentations can further contribute to their othering by reducing their complex lives and circumstances to what ails them. As such, we must ensure we do not stigmatise, simplify, or pathologise loneliness by turning it into a disease rather than a social issue. This is essential to avoid accentuating loneliness as a form of existential inequality, that is, as contributing to an unequal allocation of personhood, such as dignity, autonomy, and respect (Neves et al., 2023). Second, our semi-structured interview data and qualitative diaries produced by participants shone a light on how co-designing solely with the direct end-user—and not with all actors that interact in sensitive settings, from family to staff—shapes the usage and outcomes of technology. For example, if a family member does not accept a particular technology like an app or does not want to be in touch with their older resident, the technology can make participants even more aware of their loneliness (Neves et al., 2021). If there is no buy-in from staff, a specific technology will not be fully supported and adopted (Neves et al., 2021). Technologies do not operate in isolation, and sensitive qualitative research can be employed not only to design more comprehensive systems but also to help anticipate and avoid the negative unintended consequences that can originate from the interventions and projects we put in place (Neves, 2021). Thus, it is not enough to co-design with/for the older person living in sensitive settings;

Your voice matters!—(unintended) exclusion practices in research and older people  127 we need to design or refine technology with all social groups that will potentially interact with older users within those contexts. Older people live in sociotechnical networks that need to be mapped and engaged with if we are to support sensitive research that upholds the voices and desires of older people and their well-being.

CONCLUSION AND FUTURE DIRECTIONS Taken together, the case studies illustrating this chapter underscore that embracing an understanding of vulnerability as a socially constructed phenomenon dependent on power relations between certain groups in society (Pincock & Jones, 2020) stresses the importance of critical reflection in sensitive research. Throughout all of the above-mentioned encounters, it was clear that constant reflection on the researchers’ own stereotypes, situatedness and research practices is vital if we are to adequately represent the voices of research participants. Thus, it is crucial to incorporate a variety of positionality queries and approaches in sensitive research, which entails questioning ourselves, our motives, our blind spots and preconceived images of people living in different realities than our own; questioning our standing within our own situatedness and recognising potential tensions with the respective situatednesses of our participants; questioning not just which research methods may be adequate but also how we put them into practice. Our examples show that lack of representation and access to research participation easily become an issue of social justice, going beyond whether one is seen or heard. As noted by Westwood (2023, p.568), this “relates to whether older women [or any other (intersecting) category of difference, like sexual orientation, ethnicity/race, class, etc.] matter; whether their thoughts, views, needs, and wishes are taken into account; and whether their perspectives are included” in research, its outcomes (like social policy), and in the images that we reproduce of other people’s lived experiences. These reflections on how old age is constituted in sensitive research with intersecting categories of difference or in vulnerable settings can inform further studies and help expand our understanding of inclusive and empowering practices.

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130  Handbook of sensitive research in the social sciences Teshale, A. B., Htun, H. L., Hu, J., Dalli, L. L., Lim, M. H., Neves, B. B., Baker, J. R., Phyo, A. Z. Z., Reid, C. M., Ryan, J., Owen, A. J., Fitzgerald, S. M., & Freak-Poli, R. (2023). The relationship between social isolation, social support, and loneliness with cardiovascular disease and shared risk factors: A narrative review. Archives of Gerontology and Geriatrics, 111, 105008. https://doi​.org​/10​ .1016​/j​.archger​.2023​.105008. Walsh, K., Scharf, T., & Keating, N. (2017). Social exclusion of older persons: a scoping review and conceptual framework. European Journal of Ageing, 14, 81–98. https://doi​.org​/10​.1007​/s10433​- 016​ -0398​-8. Wanka, A., Wiesböck, L., Allex, B., Mayrhuber, E., Arnberger, A., Eder, R., Kutalek, R., Wallner, P., Hutter, H.-P., & Kolland, F. (2019). Everyday discrimination in the neighbourhood: What a ‘doing’ perspective on age and ethnicity can offer. Ageing and Society, 39(9), 2133–2158. https://doi​.org​/10​ .1017​/S0144686X18000466. Westwood, S. (2023). “It’s the not being seen that is most tiresome”: Older women, invisibility and social (in)justice. Journal of Women & Aging, 35(6), 557–572. https://doi​.org​/10​.1080​/08952841​.2023​ .2197658.

9. Drawing as an arts-based method for researching sensitive topics Jari Martikainen

INTRODUCTION Sensitive topics have gained increasing scholarly attention in qualitative social science research literature over the past few decades. On the one hand, this is influenced by the fact that a growing number of different vulnerable and disadvantaged groups of people face severe challenges in their daily lives that threaten their wellbeing. Scholars are committed to conducting research among these groups of people in order to give them a voice and critically reflect on social structures and circumstances that produce and maintain their disadvantaged positions (Liamputtong, 2007; see also Chapter 1 in this volume). On the other hand, the focus on the ‘sensitiveness’ of the research stems from the changes in theoretical, methodological, and ethical research approaches, whereby qualitative research is understood not only as a researcher-driven enterprise in which scholars recruit participants to get answers to their predetermined research questions but also as participatory research where attention is paid to the meanings, significance, and consequences of the research for the participants themselves and their communities (see Newton, 2017). Hence, instead of regarding participants as mere objects or targets of the study, they are considered experts of their lives and co-researchers constructing meaning in their lives who actively contribute to the course of the research (Leavy, 2018). This kind of methodological decolonialisation in terms of critical awareness of ‘the entanglement of knowledge, space and power’ (Kaltmeier, 2017, p.47) and of research methods that create ‘counterhegemonic intellectual spaces in which new readings of the world can unfold, in ways that lead us toward possibilities of social and material change’ (Darder, 2018, p.94) endeavours to deconstruct traditional asymmetrical power relations in research and foster the agency of the research participants. The aforementioned approaches resonate with the feminist and postmodernist frameworks that Liamputtong (2007) considered the basis of sensitive research: whereas the former aims at giving voice to marginalised groups of people and pays attention to questions of difference and power, the latter cultivates the idea of many possible realities and truths. In addition, growing interest in ‘sensitiveness’ in qualitative social science research can be related to diverse paradigmatic changes taking place at the turn of the twentieth and twentyfirst centuries that foregrounded emotions, embodiment, and lived experiences and started to question the hegemony of rational thinking and language-based research methods, as well as their potential to capture the richness of human knowledge and (embodied) experience. For example, visual, affective, embodied, and emotional turns highlighted the importance of more holistic research approaches that acknowledge affects, emotions, and experiences as part of scientific research and value their role as sources and forms of knowledge (Clough, 2007; Mitchell, 1994; Neville, 2015). These paradigmatic turns are especially meaningful for artsbased research methods, including methods based on drawing (see also Chapter 1). 132

Drawing as an arts-based method for researching sensitive topics  133 The majority of the literature on sensitive research approaches this topic from the perspective of the research participants: how to protect them and safeguard their wellbeing during the research. Recently, scholars have paid attention to ‘sensitive researchers’ as well, highlighting the importance of also understanding researchers more holistically, not only as rational cognisers but also as people with feelings and emotions for whom researching sensitive topics can be emotionally burdensome (see Fenge, Oakley, Taylor & Beer, 2019; Liamputtong, 2007; see also Chapters 1 & 4 in this volume). Even though both aspects are relevant for arts-based and drawing methods, this chapter focuses on sensitive research in terms of participants’ wellbeing and participant–researcher interaction. In this chapter, I first outline the scope of sensitive research, both in terms of issues that may be regarded as sensitive, groups of people participating in research and research ethics. Thereafter, I discuss arts-based approaches and drawing as a research method, elucidating their potential as a means of studying sensitive topics among vulnerable groups of people. I present prior studies using drawing as a means of studying sensitive topics among children and adolescents. Finally, I discuss drawing research in terms of methodological contact zones that provide participants (and researchers) with a space to meet each other, negotiate power relations, engage in self-reflection, and connect past and present experiences with future scenarios.

SENSITIVE RESEARCH: TOPICS, PARTICIPANTS AND ETHICS Although it is not possible to give an all-encompassing definition of sensitive topics and sensitive research at large, prior research has achieved consensus on certain characteristics of them. According to Lee and Renzetti (1993, p.5), a sensitive topic can be defined as ‘one that potentially poses for those involved a substantial threat’. Lee and Renzetti’s (1993) definition outlines that sensitivity in research is related to both research topics and the people participating in the research. On the one hand, researching sensitive topics refers to research that may have direct or indirect consequences on the lives of the people participating in the research, and on the other hand, it refers to research dealing with topics that participants may find delicate or traumatic for different reasons (Figoureux & van Gorp, 2023; Lee & Renzetti, 1993). Hence, research topics may be sensitive in terms of private and intimate experiences, as well as socially sensitive and stigmatising based on cultural norms, and reflecting on and sharing them may potentially be embarrassing for the participants and result in emotional arousal or social disapproval (Liamputtong, 2007; see Chapter 1). Sensitive research topics may include, for instance, physical or mental health (Crowther & Lloyd-Williams, 2012), child abuse (Walsh, 2005), family violence (Neelakantan, Fry, Florian & Meinck, 2023; Powell, McArthur, Chalmers, Graham, Moore, Spriggs & Taplin, 2018), sexuality and sexual orientation (Elam & Fenton, 2003; Liamputtong, 2007), migration experiences (Cleaveland & Kirsch, 2020), or discrimination based on diverse issues (Liamputtong, 2007), to mention but a few. On many occasions, sensitive topics are related to emotions as well as lived experiences that people may find difficult and burdensome to talk about (Dickson-Swift, James, Kippen & Liamputtong, 2009; see Chapters 1 & 3). In addition to research topics, sensitivity in research is often related to research on marginalised groups of people, such as immigrants (Elam & Fenton, 2003), people with disabilities (Tilley, Strnadová, Ledger, Walmsley, Loblinzk, Christian & Arnold, 2022) or people who

134  Handbook of sensitive research in the social sciences have been bereaved in different ways (Crowther & Lloyd-Williams, 2012), but also groups such as children and youth (Powell et al., 2018). In this sense, sensitive topics are related to vulnerable groups of people whose voices are not typically heard in research and who might find it difficult to express their voices (Liamputtong, 2007; Figoureux & van Gorp, 2023). Sensitivity in researching such marginalised groups of people is also a matter of power: researchers traditionally have a more powerful position than participants, for instance, in deciding the course of the research (Dickson-Swift et al., 2009), which participants may find threatening (Elam & Fenton, 2003). Prior research on sensitive topics has emphasised the importance of deconstructing traditional asymmetrical power relations, enabling the participants to feel safe and secure when voicing their thoughts on sensitive topics (Figoureux & van Gorp, 2023). For this reason, current research on sensitive topics tends to focus on approaches—for instance, arts-based research—that allow the participants more control over the research process. The participants may experience the discussion and expression of sensitive topics in a safe environment as empowering and giving them tools to cope with difficult circumstances (Liamputtong, 2007; see Chapter 1). Although sensitive topics and research are customarily associated with the topics and groups of participants outlined earlier, sensitiveness is an aspect of all research since researchers cannot know (in advance) what different participants consider and experience as sensitive. In terms of research ethics, researchers of sensitive issues need to carefully consider in advance how they can minimise participants’ potential discomfort and distress and ensure their feelings of comfort while participating in the research (Elam & Fenton, 2003; Figoureux & van Gorp, 2023; see also Chapters 15, 16, 17 & 18). This is of vital importance since participants are invited to talk about their experiences and feelings, some of which they might not have considered before, been aware of, or which they may find distressing and burdensome (Newton, 2017). Although the issues of ethical research must be pondered vis-à-vis each study’s topic and group of participants, some general guidelines regarding researching sensitive topics have been identified. Apart from the principles of anonymity and informed consent, it is important that participants fully understand the topic and the purpose of the research as well as the voluntary nature of participation, meaning that they can withdraw from participation at any time. It is also equally important that the information about the research and assignments be communicated using concepts and vocabulary that are understandable to the research participants (such as in the case of children), and in instances of limited language knowledge, the instructions should also be given in the participants’ native language (Liamputtong, 2010, 2023; Sewell, 2011). Since participation in research on sensitive topics may generate burdensome experiences during the research, it is important that researchers safeguard the participants at all stages of the research, make the atmosphere in the research situation comfortable and safe, and carefully monitor for possible signs of discomfort and distress among the participants (Crowther & Lloyd, 2012; Walsh, 2005). In addition, it is useful to arrange a meeting with participants after their participation and to provide information on available psychological and social services since the full impact of participation might not become known until afterwards (Newton, 2017). Since ethics is involved in all phases of research, it also refers to how researchers interpret the data, and write about and disseminate the research findings (Elam & Fenton, 2003; Liamputtong, 2007). Considerate methods of writing research articles include attempting to understand and deliver participants’ lived experiences in a way that is loyal to their voices (Crowther & Lloyd, 2012; Lee & Renzetti, 1993; Walsh, 2005). Hence, ethical research on

Drawing as an arts-based method for researching sensitive topics  135 sensitive topics means not only following the list of ethical guidelines posed by ethics committees and discussed in the literature on research ethics, but taking a holistic approach dedicated to giving voice to different (vulnerable) groups of people on sensitive topics while also treating them as experts of their lived experiences, safeguarding their wellbeing during the research, and reporting on the research findings in a manner that is considerate and loyal to the voices of the participants (also see Chapter 8).

ARTS-BASED RESEARCH AS A MEANS OF STUDYING SENSITIVE TOPICS Since the beginning of this millennium, scholars from diverse disciplines have vigorously engaged in developing arts-based research practices (Leavy, 2018; Liamputtong & Rumbold, 2008; McNiff, 2008). The roots of this scholarly preoccupation can be traced back to the end of the twentieth century when scholars started to question and challenge the linguistic turn, which heralded language as the means of constructing social reality and, in its ultimate form, regarded language as the boundaries of our world and our understanding of it (Cole & Knowles, 2008; Martikainen, 2017, 2019a). The last decades of the twentieth century and the first decades of this century have witnessed several turns that challenge the premises of the linguistic turn and the hegemony of verbal language in research. These include, for instance, visual, affective, and embodied turns (Clough, 2007; Cole & Knowles, 2008; Mitchell, 1994; Neville, 2015). Although these turns have their own characteristics, their common agenda is to focus on people’s experiences and modes of knowledge that cannot be reduced to rational verbal communication but that nevertheless contribute to the construction of social reality (Clough, 2007; Martikainen, 2017, 2019a). This is the foundation of arts-based research methods, including drawing (Leavy, 2018). Arts-based research methods can be understood widely as approaches that use arts-based means of expression in some stage of the research: data production, analysis of the data, or dissemination of the research findings (Leavy, 2018). All these stages are meaningful when researching sensitive topics. Art in arts-based research can be understood in multiple ways. First, art refers to a large scope of artistic expression, from literature to visual arts and from theatre to dance. Second, art refers to artistic productions made by professional artists as well as to creations produced by people without artistic education or prior experience in expressing themselves using arts-based means. Third, artistic creations can constitute the sole research data or can be accompanied by participants’ verbal explanations (Leavy, 2018; Weber, 2008). In all these variations, arts-based activities and productions function as a means of diversifying the participants’ expression of themselves beyond mere verbal expression, which may prove crucial when researching sensitive topics or conducting research among vulnerable groups of people. One of the main goals of arts-based research is to get in touch with people’s experiences and emotions regarding diverse topics that can be difficult or even impossible to put into words (Leavy, 2018). On the one hand, experiences can be tacit, embodied, or so multi-layered that it is difficult to find words that capture them in their full variety of meanings. On the other hand, the difficulty of expressing experiences in words may result from the fact that the experiences are sensitive and, therefore, too difficult to express verbally (Leavy, 2018; Liamputtong & Rumbold, 2008; McNiff, 2008). By focusing on people’s experiences, arts-based research

136  Handbook of sensitive research in the social sciences prioritises subjectivity as a valuable mode of knowledge (Lyon, 2020). However, arts-based research can also focus on mapping collective and shared experiences, for instance, in diverse community research projects (Leavy, 2018). Hence, arts-based methods can be used when exploring both individual and shared experiences, sentiments, and opinions. By allowing participants to express themselves through visuals, music, or creative movement, for instance, arts-based research makes participation in research possible for those participants who do not speak the same language as the researchers or who have limited skills with verbal expression due to disability (Mannay, 2016; Martikainen, 2019a). In this respect, arts-based research not only has the potential to diversify the scope of people participating in research but also gives a voice to people normally marginalised in society and in scientific research (Leavy, 2018; Martikainen, 2019a). Another central aim of arts-based research is to lower the hierarchy between the researcher and the participants. This can be understood in terms of both decreasing the researcher’s influence in the production of data and increasing the agency of the participants (McNiff, 2008). Unlike questionnaires, where researchers invite participants to select one of multiple possible answers provided by the researcher, or (semi-)structured interviews, where researchers aim to gather information about certain issues by asking specific questions, arts-based research often uses more open-ended approaches. Hence, the assignments of arts-based research do not aim at knowing something specific about the participants’ experiences; rather, they invite the participants to tell and show what is important to them or what they wish to share with the researcher (Martikainen & Hakoköngäs, 2022). For this reason, arts-based approaches foster participants’ self-determinacy. Simultaneously, the participants become experts of their experiences, and the researcher becomes a ‘learner’, whereby the participants decide what and how they wish to share about their lives and experiences with the researcher. In an arts-based approach, the researcher and participants are negotiators and co-constructors of knowledge (Leavy, 2018; McNiff, 2008). When researching sensitive topics, arts-based approaches cherish and value people’s self-determination in terms of letting them control the content and experiences they wish to share with researchers. Arts-based research not only focuses on the benefits researchers can gain from participants’ engagement in arts-based activities and means of data production. Of similar importance is that arts-based means of expression can provide participants with a mode of reflection that differs from their daily routines. More concretely, people normally use verbal language to communicate with other people; therefore, an arts-based means of expression may provide them with a novel method of reflecting on their lives. Visual means of expression, such as drawing, may distance people from their everyday stance on their lives and help them recognise subjects that remained unnoticed before (Mannay, 2016; Martikainen, 2019a). Therefore, arts-based research may provide participants with a means of ‘seeing’ their lives and experiences from a different perspective, increasing self-reflection and awareness.

DRAWING AS AN ARTS-BASED RESEARCH METHOD Defining Drawing Drawing can be approached from several perspectives. It can be regarded as a tool of thought, a means of communication, and a mode of research (Fox, Macpherson, Oli, Ranjit, Thapa,

Drawing as an arts-based method for researching sensitive topics  137 Aggett & Church, 2022). It can be understood as a way of expressing and studying people’s subjective thoughts and emotions or their socially constructed understandings (Lyon, 2020; Martikainen & Hakoköngäs, 2022). It can be used as a method of documentation and selfexpression (Hope, 2008; Lyon, 2020) and executed individually or collaboratively (Knight, McArdle, Cumming, Bone, Li, Peterken & Ridgway, 2015; Martikainen & Hakoköngäs, 2022). In addition, drawing may serve as the sole means of expression, or it can be accompanied by written or oral explanations (Mitchell, Theron, Smith, Stuart & Campbell, 2011). Lyon (2020) distinguished three types of drawing: sketching, objective drawing, and subjective drawing. Sketching refers to an activity in which drawing functions as a means of searching for visual expression for experiences, thoughts, and emotions. Objective drawing is a form of mimetic drawing that aims at recording the appearance of visual objects the way they appear in reality. Subjective drawing, in turn, refers to expressive drawing whereby the artist’s thoughts and emotions are communicated visually to other people. In this chapter, I understand drawing as a combination of sketching and subjective drawing (Lyon, 2020), whereby drawing refers to a process of searching for expression for one’s ideas, experiences, and emotions related to the research topic. This approach aims at understanding how people see and construct the world and themselves in it (Guillemin, 2004). At its very basis, drawing is the production of lines on a surface through which different kinds of forms and shapes can be created. The lines can be straight or curvy; thin or thick; unbroken or dotted; and, in addition, they can be drawn using different colours. The forms created through lines can be, for example, round, angular, irregular, and regular. In addition, drawing includes diverse colouring techniques through which different kinds of planes and textures can be created (Martikainen & Hakoköngäs, 2022). These basic elements of drawing (lines, forms, planes, textures, and colours) are capable of producing different kinds of meanings, but when these basic elements of drawing are used to depict different kinds of objects, people, and environments, their meaning potentials are multiplied (Kress & van Leeuwen, 2006). In addition, the composition of the drawing (that is, the way drawn elements are arranged on the surface) communicates meanings. Hence, drawing can be used not only to depict what people see around them but also to express their thoughts, emotions, and experiences when observing the people, objects, and environments around them (Martikainen & Hakoköngäs, 2022). However, drawing is not restricted to showcasing items from the external world and the feelings related to them. It can also be used as a means of expressing participants’ inner worlds, tacit experiences, wishes, and dreams, which are not fixed and clear but rather formless sensations. To express their experiences and emotions, participants can choose the means of visual expression (such as certain types of forms and colours) that communicate their intentions, they may customise the habitual forms of visual objects in order to express their positive or negative mood, or they may create imaginative shapes and objects to capture their thoughts and emotions (Kress & van Leeuwen, 2006; Martikainen & Hakoköngäs, 2022). Hence, drawing is not restricted to depicting forms of external reality. Similarly, drawing is not restricted to the present; it provides a means to visualise memories and future aspirations. According to Berger (2007), drawing can be understood as an archaic and innate human way of expressing oneself. Hence, expressing oneself through drawing is largely intuitive and does not necessitate artistic training. I understand Berger’s (2007) notion of the human innateness of drawing in two ways: first, as a general human inclination to express oneself through drawing, and second, as people’s acculturated understanding of what certain elements and modes of drawing mean. In Western cultures, for instance, a thick line may express heavy and

138  Handbook of sensitive research in the social sciences burdensome experiences, while a thin line may express light and airy experiences. An angular line, in turn, may express aggression, and a curvy line may express pleasant and safe feelings and experiences. A black line can express sorrow, and a yellow line happiness (see Kress & van Leeuwen, 2006). Hence, similar to words, visual means of expression can be used to express certain meanings. However, as Kress and van Leeuwen (2006) reminded, it is important to remember that the meanings of visual elements are often culture-based. This means that the interpretation of people’s drawings must be sensitive to the individual characteristics of the person, situation, and culture. In spite of drawing’s archaic nature in human expression (Berger, 2007), people may feel alienated from drawing because they mostly communicate through verbal means or use photography as a means of visual communication. Taking photographs differs from drawing because it lacks the physical act of creation as well as the kinaesthetic and sensory experiences generated when drawing an image with a drawing tool on a surface (Knight et al., 2015; Literat, 2013; Martikainen, 2017). When a person draws, their hand moves the drawing tool against the surface. The friction between the drawing tool and surface, the movement of the hand, and the visual perception of the emergent drawing all direct the course of future acts of drawing the image. These kinaesthetic experiences activated through drawing may influence the visual outcome as well as the meanings related to it (Bullen, Fox & Lyon, 2017; Martikainen, 2017). Drawing as an emergent process interlacing cognitive, visual, embodied, and environmental layers may therefore be understood as a multimodal inner talk, which provides the drawer with an affordance to not only reflect on their (embodied) experiences but also become aware of them (see Martikainen, 2017). Hence, drawing is a means of visual thinking (Arnheim, 1969) in which meanings are negotiated and constructed. Therefore, it is not only the outcome (image) that matters but also the process of drawing. The embodied quality of drawing may provide vulnerable groups of people with tools to map and recognise the (tacit) experiences they wish to explicate and share with researchers. Drawing is a form of visual thinking that does not follow the same logic as verbal thinking (Arnheim, 1969). Whereas verbal thinking is mostly related to linearity and rationality, visual thinking is related to spatiality and associativity, intertwining conscious and unconscious (tacit) layers of thinking and experiencing (Arnheim, 1969). For this reason, drawing— similar to other arts-based methods—offers an alternative way to think about and reflect on the research topic. In addition, it may facilitate the expression of those experiences for which verbalising may be challenging and difficult (Martikainen & Hakoköngäs, 2022). Drawing as a Means of Researching The idea of drawing as a means of researching is not new at all. Great Renaissance painters such as Leonardo da Vinci did not use drawing only as a means of documenting but also as a means of inventing. Similar to da Vinci, artists after him have used drawing to not only document what they see but also to express what they feel and sense while seeing (Hope, 2008). Hence, the value of drawing is not dependent on the lifelikeness of the drawing to its referent—what Lyon (2020) conceptualised as objective drawing—but rather its meaning is related to the ways it can clarify or reveal the experiences of the artist (Cain, 2010; Hope, 2008). Often, it is the drawing’s detachment from visual lifelikeness that provides a means to understand the artist’s experiences.

Drawing as an arts-based method for researching sensitive topics  139 In this chapter, I understand drawing as a participatory research method that does not necessitate training in drawing and regards drawing as a means of self-expression without measuring levels of artistic skill (see Leavy, 2018). In addition, I understand drawing as a low-threshold means of visual expression that does not require complex tools and materials or skills to use them (see Literat, 2013; Lyon, 2020; Martikainen & Hakoköngäs, 2022). Drawing necessitates a surface on which to draw and an object through which marks on the surface can be made. Hence, at its simplest, drawing can mean creating forms with a finger in sand or making lines and shapes with pencil on paper. Similarly, drawing stick figures and robust shapes without refined lifelikeness can be perfect for the purposes of research. Therefore, drawing does not burden the participants with requirements of technical skills but rather invites them to play with the medium. However, drawing can also be adjusted to the participant’s skill level and special interests. For instance, drawings can be made using colours, stencils, or computerised drawing applications. In addition, drawings can be executed individually or collaboratively in groups (Martikainen & Hakoköngäs, 2022). Therefore, drawing may offer the participants a wide variety of methods to map and search for how and what they want to express through drawing. This freedom and self-determination provided by drawing may motivate the participants to engage in research and self-reflection (see Martikainen, 2019b). Hence, drawing as a lowthreshold method does not suggest that the research participants do not have the skills to express themselves in complex ways. Rather, drawing may provide them with a means of choosing the method that they are comfortable with or that aligns with their skills, feelings, and aspirations. Because drawing does not necessitate complex tools, materials, or premises, this method offers a flexible means to conduct a study in which the research participants feel comfortable. Drawing research can be conducted in participants’ homes, in cafes, or in nature. Therefore, the drawing method may be used as an approach to empower the participants to determine where they wish to participate in the study. The participants’ choice of the research site is a concrete means of lowering the power hierarchy between the researcher and the participants. Similarly, the participants’ choice regarding which drawing method they would like to use empowers them and enables them to voice themselves in the research. This freedom of choice may prove motivating and rewarding for people in vulnerable positions. Drawing is emergent by its nature (Cain, 2010): it evolves during the process based on the participant’s thoughts and experiences, the tools used, and environmental factors (Rosenberg, 2008). This means that participants do not necessarily know in advance what the drawing will be like at the end. Even though the participant may have a preliminary idea of what to draw, the emergent lines and colours produced through drawing guide and influence the next steps of drawing. More concretely, the emergent drawing the participant sees, as well as the kinaesthetic experiences provided through drawing, guide them to make conscious and/or unconscious decisions on how to continue drawing. Hence, drawing cannot be understood in terms of casting a ready mental picture onto paper but rather as a reflective process whereby the participant’s intentions of what to draw are negotiated with what is already drawn, as well as the sensory-motor experiences provided through drawing (Cain, 2010; Martikainen, 2017). Because of its emergent quality, drawing is an extremely reflexive mode of expression, whereby the focus is not on the accuracy of depicting certain objects but rather on how the participants express objects visually in order to articulate their experiences and conceptions of research topics (Hope, 2008). Hence, drawing may appear for the participants as a

140  Handbook of sensitive research in the social sciences site of negotiation whereby they can locate and construct themselves in relation to reality (Martikainen, 2017). In this process, the participants become researchers themselves in terms of exploring their thoughts and experiences through drawing. For the aforementioned reasons, the meanings constructed through drawing have been conceptualised as ‘floating’ (Martikainen & Hakoköngäs, 2022; Rosenberg, 2008). On the one hand, participants may use the process of drawing as a means of searching for the meaning of what they are drawing. On the other hand, a drawing may be open to several potential meanings and interpretations (Martikainen & Hakoköngäs, 2022). For this reason, it is customary in participatory research using drawing that participants elaborate on the meanings of the drawing verbally (Joseph et al., 2019; Liamputtong & Benza, 2019; Liamputtong & Fernandes, 2015; Liamputtong & Suwankhong, 2015; Mitchell et al., 2011). As prior literature has shown, research participants may have anxiety about drawing and question their drawing skills. Therefore, it is crucial that researchers make it clear that drawing skills are not evaluated and are of minor importance in the research (Lyon, 2020; Martikainen & Hakoköngäs, 2022; Mitchell et al., 2011). Similarly, it is important to tell the participants that drawing is understood as a means of thinking, feeling, and expressing the research topic visually. However, it is also important to tell the participants that they can talk about their drawings either in writing or through interviews. This kind of ‘draw-and-write’ or ‘draw-andtell’ assignment may reassure the participants because they know that they also have a chance to elaborate on their communicative intentions verbally (Lyon, 2020; Mitchell et al., 2011). As prior research has shown, the aforementioned reassurances may help the participants to adopt a more relaxed attitude toward drawing and even enjoy the drawing assignment (Lyon, 2020; Martikainen, 2018). Although verbal explanations are often considered an invitation for participants to explicate the meanings they wish to communicate through their drawing (Mitchell et al., 2011), the relationship between drawing and writing can also be understood differently. Namely, verbal explanations about the drawings can be understood as a joint and reciprocal multimodal process whereby the verbal comments are not regarded only as verbal explanations of the drawings but rather as a continuation of the reflective process of the topic started through drawing. In this procedural view, when elaborating on their drawings verbally, participants may realise and understand further aspects of their thoughts and experiences related to the research topic expressed through the drawing. Therefore, it is important that the drawings are neither interpreted only based on their verbal elaborations nor that the verbal explanations are understood only as elaborations of the drawings. Hence, although the prime focus of analysis is on understanding the drawing from the perspective of the participant (drawing and verbal communication together), it is important to also study the drawings and verbal elaborations separately since they might show inconsistencies or discrepancies that allow the researcher to spot silent aspects of sensitive topics (Martikainen, 2019b). The possibility of expressing sensitive topics through drawing may be rewarding for research participants. In his study on arts-based methods in teaching art history, Martikainen (2017) noticed that students who suffered from social anxiety felt more comfortable expressing themselves verbally and participating in classroom discussions when they could do this through talking about the pictures they had created. Visual reflection through arts-based activities seemed to help them to map and form their views on the topic of discussion as well as encourage them to express their views.

Drawing as an arts-based method for researching sensitive topics  141 Whereas the majority of research using drawing has focused on drawings created by individual participants, drawing can also be conducted as a collaborative process whereby participants concretely negotiate what they want to share and express and what kind of knowledge they construct through drawing (Guillemin, 2004; Knight et al., 2015). Researchers may also draw together with the participants, which may enhance rapport, open up conversations, and create spaces for shared reflection and construction of knowledge (Fox et al., 2022). Drawing together can be understood in terms of dialogical drawing (Rogers, 2008), which focuses not only on the outcome of the collaborative drawing but also on the process of creating shared experiences and meanings through drawing. Conversing through drawing may empower participants to express themselves on sensitive topics that are difficult to speak about as well as facilitate collaboration for participants with low verbal literacy (Fox et al., 2022). Hence, dialogical drawing is an inclusive method and breaks down hierarchies between researchers and participants. In addition, this kind of collaborative drawing may prove fruitful when researchers and participants come from different backgrounds or when conducting research among children (Knight et al., 2015; Rogers, 2008).

DRAWING AS A MEANS OF STUDYING SENSITIVE TOPICS RELATED TO CHILDREN AND ADOLESCENTS Prior research has applied drawing extensively to study sensitive issues related to children and adolescents (see also Chapters 1, 11, 14 & 27). For instance, Sewell (2011) conducted a draw-and-write study among children in England focusing on their perceptions of transitioning from primary to secondary school as well as their coping strategies related to bullying. She found that drawing facilitated the expression of painful experiences for the children. Green and Denov (2019) conducted a study using two arts-based methods—mask-making and drawing—among children born in captivity in Uganda and found that these methods fostered community building among the participating children and built trust between them and the research team when researching sensitive topics. Nomazhwezi Mayaba and Wood (2015), in turn, conducted a study using drawing and collage among South African children (9–14 years) who were orphaned and rendered vulnerable by HIV and AIDS. Even though the researchers praised the method for its ability to produce rich data, they found it challenging to identify themselves with the experiences of the children based on drawing alone and concluded that conducting drawing research is time-consuming. These studies support Liamputtong and Fernandes’s (2015) finding that participants’ verbal explanations regarding their visual creations are important in terms of supporting researchers’ interpretations about the drawings. Another sensitive topic in which drawing has been used is migration. Regarding this topic, drawing has mainly been used to research refugee children’s and adolescents’ experiences. Beauregard, Papazian-Zohrabian and Rousseau (2016) used drawing as a means of studying collective identity and trauma in a case study of a male Palestinian refugee student. They found that drawing provided him space for exploring and experimenting with different identities and integrating them into a meaningful whole. Jabbar and Betawi (2018), for their part, conducted a drawing-based study among Iraqi refugee children in Jordan who fled the Islamic State Group in 2014. The findings of this research showed that these children understood war, rather than peace, to be the norm. Lenette, Prasheela, Chrysostomou, and Athanasopoulos (2017) used drawing to study how refugee children in detention experienced their circumstances. The

142  Handbook of sensitive research in the social sciences study showed that drawing provided the children with a means of expressing how their rights were violated in detention. Martikainen, Farahani, and Musavi (forthcoming) conducted a study among Afghan forced migrant children and adolescents living in Iran and found that an open drawing assignment—‘Draw an image of what you would like to show to Iranian people’—provided the participants with a means of expressing and reflecting on problematic intergroup relations between Afghan and Iranian people. In their ongoing research project, Martikainen and his colleagues use drawing as one means of studying intergroup relations between migrant and Finnish adolescents living in the Savo region in the east of Finland. Thus far, they have organised arts-based workshops based on individual and collaborative drawing assignments whereby adolescents from different cultural backgrounds could express their thoughts and experiences of encountering young people from different cultural backgrounds. Preliminary observations showed that, whereas individual drawing assignments expressed both joys and anxieties related to intercultural encounters and often depicted different kinds of barriers (such as based on language) between adolescents coming from different backgrounds, collaborative drawing assignments deconstructed the divisions based on cultural backgrounds. Hence, collaborative drawing acted as a means of negotiating and imagining common future scenarios. Despite its many potentials, drawing as a means of researching sensitive topics has certain risks. Since drawing strongly appeals to emotions and experiences, it may remind participants of difficult and traumatic memories and experiences. For this reason, it is important to inform the participants and, in the case of children and adolescents, their caregivers/parents about the potential risks of participation (Theron, 2012). Similarly, researchers may associate themselves with participants’ distress and therefore could benefit from debriefing (Theron, 2012). In addition, some participants may feel uncomfortable with drawing and doubt their drawing skills. For this reason, it is important to tell the participants that drawing skills are secondary (Mitchell et al., 2011). Finally, interpreting drawings in a way that is loyal to the participants’ intentions is sometimes challenging, for example, due to different cultural backgrounds. Therefore, it can be useful to arrange a meeting with participants during which the researchers can discuss their analysis with the participants.

CONCLUSIONS AND FUTURE DIRECTIONS To summarise this chapter, drawing is a low-threshold means of visual expression that can be adjusted to the skills and desires of the participants and, therefore, it may be used flexibly among different vulnerable groups of people. Similarly, because drawing research diminishes the power hierarchy between researchers and participants, it allows participants to determine what and how they wish to express about sensitive topics through drawing. Hence, the researcher becomes a learner, guided by the participants to see the topic from their perspective. Being a form of visual thinking that enforces reflection, drawing may provide participants with possibilities to map and explore their thoughts, feelings, and experiences on sensitive topics in a safe environment, as well as to discuss them through drawing. Thus far, drawing has been extensively used for researching sensitive topics, but it has been applied in somewhat restricted ways. Largely, prior research has focused on asking individuals to draw with a pen/pencil on paper about their experiences. The genres of drawing used have mainly consisted of free drawing and cartoons. Although sensitive topics are often intimate

Drawing as an arts-based method for researching sensitive topics  143 and necessitate individual elaboration, integrating collaborative forms of drawing at some stage of research might open venues for the participants to discuss sensitive topics among themselves through drawing. This might function as a means of fostering the role of peer support for people in vulnerable positions. Similarly, it would be interesting to see what a more varied scope of drawing – for instance, drawings executed in nature using natural elements – could bring to the field. These nature drawings easily fade, but they could be photographed for analysis purposes. In addition, temporary drawings using elements of nature might encourage and motivate vulnerable groups of people to explore and express their temporary, situated, and contextual identities. In prior studies, arts-based research has been conceptualised as a contact zone (Esin, 2017), referring to art’s function as a means of getting in touch with different kinds of people and working on issues related to power and voice. Askins and Pain (2011, p.806) argued that understanding research as a contact zone ‘involves working collaboratively with those who are conventionally situated as research subjects … and necessitates working with and through issues of voice, agency, power, and desire alongside all participants in the process’. Arts-based research on sensitive topics among vulnerable groups of people using drawing can be conceptualised in terms of the aforementioned meanings of contact zones. However, I would like to enlarge the concept of contact zones in two ways that connect individual persons to larger social conditions and circumstances. First, drawing can be understood as a means of creating a contact zone in terms of connecting the drawers to their feelings, emotions, and thoughts, whereby contact refers to connectedness to oneself. This might create an affordance for vulnerable groups of people to get connected with their thoughts and emotions. Second, the concept of a contact zone may also include the aspect of time in terms of a process interlacing different ‘time zones’. Drawing happens in the present, but it uses past experiences as its seedbed. In addition to sourcing from the past, drawing in the present also orientates the participant to the future (Rosenberg, 2008). Hence, drawing may consciously or unconsciously function for participants as a means of intertwining past experiences, present views, and future aspirations. The (potentially positive) aspect of future aspirations provided through drawing may be of utmost importance for vulnerable groups of people and others dealing with sensitive issues. Drawing may function as a means of creating a narrative of hope by providing the participants with tools to orientate themselves to the future. Through their visual nature, drawings concretise sensitive topics and the experiences related to them. On the one hand, drawing may enable vulnerable groups of people to express themselves on sensitive topics; on the other hand, drawings can be used to communicate these issues to diverse audiences in a more tangible way. Hence, the visual tangibility of drawings may not only increase understanding of sensitive topics and diverse, vulnerable groups of people but also contribute to critical awareness about social structures and power relations that construct and maintain these disadvantaged positions. Because of their visual and emotional appeal, drawings expressing and reflecting on sensitive topics may generate emotional responses among diverse audiences. Since visual images are capable of arousing empathy (Grinstein, Hagtvedt & Kronrod, 2019), research publications using drawings as examples of data and/or a means of presenting research findings may serve as education for more sensitive audiences in the future.

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Drawing as an arts-based method for researching sensitive topics  145 Joseph, J., Liamputtong, P., & Brodribb, W. (2019) Postpartum breastfeeding experiences in the traditional-biomedical crossroads: A qualitative study using drawing with Vietnamese and Myanmarese refugee women in Australia. Journal of Advanced Nursing, 75(11), 2855–2866. Kaltmeier, O. (2017). Doing area studies in the Americas and beyond: Towards reciprocal methodologies and the decolonization of knowledge. In K. Mielke & A. K. Hornidge (eds), Area studies at the crossroads (pp.47–67). Palgrave Macmillan. Knight, L., McArdle F., Cumming T., Bone, J., Li, L., Peterken, C., & Ridgway, A. (2015). Intergenerational collaborative drawing: A research method for researching with/about young children. Australasian Journal of Early Childhood, 40(4), 21–29. https://doi​.org​/10​.1177​/183693911504000404. Kress G. & van Leeuwen, T. (2006), Reading images. The grammar of visual design. London: Routledge. Leavy, P. (2018). Introduction to arts-based research. In P. Leavy (ed.), Handbook of arts-based research (pp.3–21). New York: The Guilford Press. Lee, R. & Renzetti, C. (1993). The problems of researching sensitive topics: An overview and introduction. In C. Renzetti & R. Lee (Eds.), Researching sensitive topics (pp.3–13). Sage. Lenette, C., Prasheela, K., Chrysostomou, D., & Athanasopoulos, A. (2017). What is it like living in detention? Insights from asylum seeker children’s drawings. Australian Journal of Human Rights, 23(1), 42–60. https://doi​.org​/10​.1080​/1323238X​.2017​.1314805. Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. Sage. Liamputtong, P. (ed.) (2023). Handbook of qualitative cross-cultural research methods: A social science perspective. Cheltenham: Edward Elgar. Liamputtong, P. (2010). Performing qualitative cross-cultural research. Cambridge: Cambridge University Press. Liamputtong, P. & Benza, S. (2019). ‘Being able to bear a child’: Insights from Zimbabwean women in Melbourne. Women & Birth, 32, e216–e222. Liamputtong, P. & Fernandes, S. (2015). What makes people sick?: The drawing method and Burmese refugee children’s perceptions of health and illness. Australasian Journal of Early Childhood, 40(1), 23–32. https://doi​.org​/10​.1177​/183693911504000104. Liamputtong, P. & Rumbold, J. (eds) (2008). Knowing differently: Arts-based and collaborative research methods. New York: Nova Science Publishers. Liamputtong, P. & Suwankhong, D. (2015) Breast cancer diagnosis: Biographical disruption, emotional experiences and strategic management in Thai women with breast cancer. Sociology of Health & Illness, 37(7), 1086–1101. Literat, I. (2013). “A pencil for your thoughts”: Participatory drawing as a visual research method with children and youth. International Journal of Qualitative Methods, 12(1), 84–98. https://doi​.org​/10​ .1177​/160940691301200143. Lyon, P. (2020). Using drawing in visual research: Materializing the invisible. In L. Pauwels & D. Mannay (eds), The Sage handbook of visual research methods (pp.297–308). Sage. Mannay, D. (2016). Visual, narrative and creative research methods. Application, reflection and ethics. London: Routledge. Martikainen, J. (2017). Making pictures as a method of teaching art history. International Journal of Education & the Arts, 18(9), 1–25, accessed 24 September 2024 at http://www​.ijea​.org​/v18n19/. Martikainen, J. (2018). The promise of visual approaches in organizational and management research. In W. Thomas, A. Hujala, S. Laulainen & R. McMurray (eds), The management of wicked problems in health and social care (pp.235–249). London: Routledge. Martikainen, J. (2019a). Visual arts-based methods in social sciences. PEOPLE: International Journal of Social Sciences, 5(2), 323–345. https://dx​.doi​.org​/10​.20319​/pijss​.2019​.52​.323345. Martikainen, J. (2019b). Social representations of teachership based on students’ and teachers’ drawings of a typical teacher. Social Psychology of Education, 22, 579–606. https://doi​.org​/10​.1007​/s11218​ -019​- 09490​-w. Martikainen, J., Farahani, H., & Musavi, S. A. (forthcoming). Experiences of intergroup relations among Afghan forced migrant children and adolescents living in Iran – An arts-based study. Martikainen, J. & Hakoköngäs, E. (2022). Drawing as a method of researching social representations. Qualitative Research, 23(4), 981–999. https://doi​.org​/10​.1177​/14687941211065165. McNiff, S. (2008). Art-based research. In J. G. Knowles & A. L. Cole (eds), Handbook of the arts in qualitative research. Perspectives, methodologies, examples, and issues (pp.29–40). Sage.

146  Handbook of sensitive research in the social sciences Mitchell, W. J. T. (1994). Picture theory: Essays on verbal and visual representation. Chicago: University of Chicago Press. Mitchell, C., Theron, L., Smith, A., Stuart J., & Campbell, Z. (2011). Drawings as research method. In L. Theron, C. Mitchell, A. Smith & J. Stuart (eds), Picturing research: Drawing as visual methodology (pp.19–36). Sense Publishers. Neelakantan, L., Fry, D., Florian, L., & Meinck, F. (2023). Adolescents’ experiences of participating in sensitive research: A scoping review of qualitative studies. Trauma, Violence, & Abuse, 24(3), 1405–1426. https://doi​.org​/10​.1177​/15248380211069072. Neville, M. (2015). The embodied turn in research on language and social interaction. Research on Language and Social Interaction, 48(2), 121–151. https://doi​.org​/10​.1080​/08351813​.2015​.1025499. Newton, V. L. (2017). “It’s good to be able to talk”: An exploration of the complexities of participant and researcher relationships when conducting sensitive research. Women’s Studies International Forum, 61, 93–99. https://doi​.org​/10​.1016​/j​.wsif​.2016​.11​.011. Nomakhwezi Mayaba, N. & Wood, L. (2015). Using drawing and collages as data generation methods with children: Definitely not child’s play. International Journal of Qualitative Methods, 14(5), 1–10. https://doi​.org​/10​.1177​/1609406915621407. Powell, M. A., McArthur, M., Chalmers, J., Graham, A., Moore, T., Spriggs, M., & Taplin, S. (2018). Sensitive topics in social research involving children. International Journal of Social Research Methodology, 21(6), 647–660. https://doi​.org​/10​.1080​/13645579​.2018​.1462882. Rogers, A. (2008). Drawing encounters: A practice-led investigation into collaborative drawing as a means of revealing tacit elements of one-to-one social encounter. Doctoral Dissertation, University of Arts London, UK. Rosenberg, T. (2008). New beginnings and monstrous births: Notes towards an appreciation of ideational drawing. In S. Garner (ed.), Writing on drawing: Essays on drawing practice and research (pp.109–124). Bristol: Intellect. Sewell, K. (2011). Researching sensitive issues: A critical appraisal of “draw-and-write” as a data collection technique in eliciting children’s perceptions. International Journal of Research & Method in Education, 34(2), 175–191. https://doi​.org​/10​.1080​/1743727X​.2011​.578820. Theron, L. C. (2012). Does visual participatory research have resilience-promoting value? Teacher experiences on generating and interpreting drawings. South African Journal of Education, 32(4), 381–392. Tilley, E., Strnadová, I., Ledger, S., Walmsley, J., Loblinzk, J., Christian, P. A., & Arnold, Z. J. (2022). ”Working together is like a partnership of entangled knowledge”: Exploring the sensitivities of doing participatory data analysis with people with learning disabilities. In E. Borgstrom, S. Mallom & S. Murphy (eds), Unpacking sensitive research (pp.569–579). London: Routledge. Walsh, K. (2005). Researching sensitive issues. In A. Farrell (ed.), Ethical research with children (pp.68–80). Open University Press. Weber, S. (2008). Visual images in research. In J. G. Knowles & A. L. Cole (eds), Handbook of the arts in qualitative research. Perspectives, methodologies, examples, and issues (pp.41–53). Sage.

10. Navigating sensitivity in urban research: methodological reflections from using photovoice with street traders Elmond Bandauko and Godwin Arku

INTRODUCTION The use of participatory photovoice in social science research has significantly increased over the years. Participatory photovoice is an action research method that empowers participants to share their lived experiences using photography and critical dialogue (Adams & NyantakyiFrimpong, 2021; Erfani, 2021; Nykiforuk et al., 2011; Sutton-Brown, 2014; Wang, 2006). The process involves giving participants cameras, training them on basic photography, and letting them take pictures to illuminate their lived experiences. Researchers in the social sciences are increasingly deploying ‘participatory visual methodologies to promote critical reflections on urban challenges’ (Carpenter, 2022, p.351). Compared with traditional qualitative approaches, participatory photovoice engages directly with participants, foregrounding their lived experiences and potentially leading to transformative social change through collaborative knowledge production. In our research in Harare, we used participatory photovoice to investigate urban governance and the spatial politics of street traders in Harare, Zimbabwe (Bandauko & Arku, 2023b). The goal of photovoice was to give participants an opportunity to visualise how they negotiate access to contested urban spaces in pursuit of their livelihoods. This project raises significant ethical dilemmas since street traders constitute one of the most vulnerable and marginalised urban populations in Global South cities. Street traders engage in precarious livelihoods through selling different types of products in public spaces (streets, pavements and open spaces). Their livelihoods are always violently disrupted through evictions, harassment, and penalisation from both state and municipal enforcement authorities. These dynamics raise complex and multifaceted ethical dilemmas with respect to conducting sensitive research with vulnerable populations. One of the photovoice participants said, ‘If the police see me taking pictures, I will be in trouble.’ This sentiment is a vivid demonstration of why researchers should consider conducting ethically sound studies that balance the need for nuanced data and protection of participants’ safety. Despite the growing adoption of photovoice as a research methodology, there are limited studies focusing on the intricate practicalities and nuances associated with its implementation, especially within studies involving vulnerable urban communities such as street traders. Most of the existing studies on photovoice often report on the technicalities of applying the methods, thereby missing out on the nuanced, field-specific reflections and experiences. Among the few studies that discuss these issues, Packard (2008), Harley (2012), and Prins (2010) examine the multiple ethical constraints experienced using the photovoice methods, including: (i) managing the power asymmetry between researchers and participants; (ii) barriers to participants’ 147

148  Handbook of sensitive research in the social sciences involvement and commitment, particularly with vulnerable people (such as the homeless); and (iii) challenges associated with seeking consent from subjects who appear in the photographs. While these studies offer relevant lessons, both Packard (2012) and Harley (2012) are based on fieldwork experiences from the USA and South Africa, respectively, while Prins (2010) draws from experiences in a rural village in El Salvador. Applying photovoice with urban populations is a unique approach that can generate specific lessons. Overall, our chapter responds to the urgent need to provide advice on how to conduct social science research with vulnerable populations (Clark et al., 2010; Liamputtong, 2007, 2019). Our research with street traders brings to the fore key issues that should be considered to protect participants from potential harm. These include the following: (i) balancing between obtaining data and exposing street traders’ spatial strategies; (ii) handling sensitive gendered experiences from female street traders; (iii) dealing with participants’ personal life stories; (iv) managing contentious relations between street traders and urban authorities; and (v) tackling power dynamics between the researcher and participants. Most of these issues are not formally taught in research methods courses. Moreover, most university ethical guidelines contain general standards on conducting ethical research, which might significantly differ from fieldwork realities and experiences. Although research contexts differ, we believe that the insights presented in this chapter will be useful for scholars working on the dynamics of street trading in global south cities. The lessons and fieldwork reflections offer critical entry points for researchers interested in applying participatory and action research methodology with vulnerable urban populations. Given the relatively similar characteristics of street traders as a study population, the lessons can be easily replicated in other geographic contexts. Beyond street traders, the lessons from our photovoice study are also relevant to researchers working with other vulnerable and marginalised urban populations such as waste pickers, undocumented migrants, refugees, and informal transport operators, among others. Following the introduction, the rest of the chapter is structured as follows. In the next section, we provide a brief synopsis on sensitive social science research, followed by an outline of the study context. Next, we discuss how we applied photovoice with street traders in Harare. We then outline fieldwork reflections and lessons learnt. We end the chapter by outlining future directions.

A BRIEF SYNOPSIS OF SENSITIVE SOCIAL SCIENCE RESEARCH Sensitivity in social science research is a complex and multifaceted concept. Sensitive research topics are those that are socially sensitive (that is, there are potential social consequences or implications for individuals or social groups) and depend on the individuals involved, the topic, or the context of the investigation (Sieber & Stanley, 1988). Thus, sensitive social science research focuses on topics or phenomena that are considered delicate, controversial, or potentially harmful to individuals or communities involved (Liamputtong, 2019). Sensitive topics are underpinned by multiple, complex relationships between the various stakeholders within the environment in which the research is conducted (Powell et al., 2018; Sparrman, 2014). These topics usually focus on deeply personal, emotional, or politically charged issues, such as political dissent, racial discrimination, abuse, and violence, among others. In sensitive research, sensitivity is often described in terms of two key elements: firstly, the inherent sensitive attributes of the research topic itself, and secondly, the methodological and practical

Navigating sensitivity in urban research  149 means of sensitively addressing such sensitive issues (Mallon et al., 2021; see also Chapter 1 in this volume). Conducting sensitive social science research requires careful planning, ethical considerations, and a nuanced approach to data collection, analysis, and dissemination. In doing so, researchers ‘need to be able to make an assessment of the impact of the research on both the participants and themselves’ (Dickson-Swift et al., 2007, p.328). Street trading is considered a sensitive research theme because of (i) regulatory and legislative ambiguity; (ii) socio-economic vulnerability; (iii) social stigma; (iv) safety and security concerns; (v) cultural sensitivity; and (vi) unequal power dynamics. These characteristics create significant challenges for both researchers and participants who are engaged in participatory research. For participants, street trading creates social, economic, and sometimes emotional distress due to the hostility of their operating environment. For researchers, the challenge revolves around conducting ethically sound and socially sensitive research. This is particularly challenging in contexts where street traders are subjected to constant harassment, displacement, and other forms of violent repression, amplifying their vulnerability and marginalisation (Bandauko & Arku, 2024b).

THE PHOTOVOICE METHOD AND ITS APPLICATION: RESEARCHING STREET TRADERS IN HARARE This chapter is based on a study conducted in Harare, Zimbabwe’s national capital. Founded in 1890 by the British colonial government, Harare was originally named Fort Salisbury (Matamanda et al., 2020). The term ‘fort’ was derived from the architectural principles of fortified cities and towns in medieval Europe, whose design was mostly influenced by the need to protect citizens from potentially hostile neighbours. During the colonial era, municipal authorities in Harare planned and managed urban spaces following strict modernistic ideals of order, efficiency, and aesthetics (Bandauko & Arku, 2024a; Bandauko et al., 2021; Matamanda et al., 2020); where no form of informal economic activities was tolerated (Mbiba, 2017). After four decades of independence since 1980, the urban planning frameworks and practices in Harare still resemble those of the colonial era, albeit with minimal revisions (Bandauko & Arku, 2024b). As such, the implementation of these laws revolves around criminalisation, displacement, and penalisation of informal economic activities (Bandauko et al., 2021; Kamete, 2013). Over the years, Harare’s urban economy has become highly informalised due to rising urban unemployment, largely driven by macro-economic instability. Due to macro-economic instability, diverse groups of street traders, including women, young people, the disabled, and the elderly, have resorted to appropriating public spaces for their everyday survival. Current statistics on street traders in Harare suggest that there are more than 20,000 street traders operating in the Harare central city area (Matamanda et al., 2020). These figures are grossly underestimated as informal street trading has become pervasively dominant, employing more than 50 per cent of the urban population in Harare. Geographically, our photovoice project was conducted in Harare’s central city area because of its symbolic and economic importance. The Harare central city area is an intense battleground where street traders’ appropriation of space always clashes with urban officials’ visions of what a city should look like. As Harare seeks to achieve world-class status, street trading is often criminalised, penalised, and displaced (Bandauko et al., 2021; Kamete, 2013). In this context, the photovoice methodology

150  Handbook of sensitive research in the social sciences was implemented with a cohort of ten street traders, comprising six female and four male participants. These individuals represented diverse backgrounds, selling various types of goods, and conducting their trade activities across different public spaces within the city centre. Photovoice emerged in the 1990s as a method to empower participants to share their lived experiences and drive social change (Wang, 1999, 2006). Combining photography and critical dialogue, photovoice empowers participants to have a voice on issues that directly affect their everyday lives. The popularity of the photovoice method is based on the potential benefits it offers to different stakeholders, including participants, researchers, the wider community, and policymakers/decision-makers. For researchers, photovoice facilitates the collaborative development of socially and culturally relevant knowledge, which can serve as a catalyst for meaningful social change (Adams & Nyantakyi-Frimpong, 2021; Allen, 2012). By combining narratives and visual representations, photovoice enhances researchers’ ability to authentically capture the essence of an issue from the participants’ perspectives (Castleden et al., 2008; Malherbe et al., 2023; Mukumbang & van Wyk, 2020). The resultant photo narratives provide a robust platform for researchers to offer a nuanced understanding of social issues, often elusive through conventional methods like interviews and focus groups. The implementation of photovoice follows a systematic process. The first component of the photovoice method involves the recruitment of photovoice participants and target decisionmakers. This stage also involves the training of participants in photography and fieldwork ethics. In our study, we initially held meetings with key urban governance actors in Harare to solicit their support for the photovoice project. These include leaders of civil society groups such as the Secretary General of the Zimbabwe Chamber of Informal Economy Associations (ZCIEA), selected city officials, and councillors. There was significant buy-in, particularly from the civil society leaders, who saw it as an empowerment opportunity for street traders, most of whom do not have opportunities to participate in processes that shape their lives. Working closely with ZCIEA, we purposefully recruited ten photovoice participants. Among the participants, there was a mixture of age groups and all the street traders had varied trading experiences. In terms of age, the oldest participant was 46 while the youngest was 29. One of the participants was a disabled male street trader operating from one of the prime locations in Harare CBD. In designing and implementing the photovoice, we drew from feminist theory by using a method that was collaborative and inclusive of women. We adopted this approach because we were also interested in investigating the gendered dimensions of street traders’ everyday experiences in Harare’s contested spaces (see Bandauko et al., 2024). The recruitment of the participants was followed by a training workshop covering issues such as basic photography skills and photo-taking ethics. The training on photovoice procedures and guidelines was done collectively (as a group). The group-based delivery of the training enhanced camaraderie among participants and collectively encouraged street traders to share their thoughts and mutual concerns with each other. During the training workshop, participants signed written consent forms to demonstrate their willingness to voluntarily participate in the photovoice activity. The second component involves the collective interpretation of images as a way of cocreating knowledge and co-constructing meaning. To facilitate the group discussion of photographs, the SHOWED guide was used with the following questions: What do we See here? What is really Happening here? How does this relate to Our lives? Why does this concern, situation, or strength exist? How can we become

Navigating sensitivity in urban research  151 Empowered through our new understanding? And what can we do? (Simmonds et al., 2015; Sutton-Brown, 2014). Each participant selected the five best photos that represented their everyday experience in using public spaces. These photos were used as the basis for discussion during the interviews. During the interviews, we used a modified version of the SHOWED guide to ask participants the following questions: (i) where the photo was taken; (ii) what the photo was or what it depicted; (iii) how the photo relates to urban governance and everyday experiences of street traders; (iv) why the problem/concern shown in the photo existed; and (v) what could be done about the issues or challenges highlighted in the photo. The purpose of this phase was to initiate critical dialogue and raise participants’ consciousness of the socioeconomic and political forces shaping their everyday life (Bandauko & Arku, 2023b). The third component of photovoice involves the photo exhibition and dissemination of research findings to drive social change. This part of the photovoice method brings together policymakers, community leaders, and participants to dialogue on key issues using exhibited photographs. We conducted our photo exhibition at Town House in Harare city centre. Permission was granted by the Town Clerk’s Office for the exhibition to be conducted at Town House. The exhibition was attended by officials from the informal sector section, Department of Housing and Community Services, civil society leaders, City Planning officials, and street traders who presented their lived experiences using photography. However, not all participants attended the exhibition for fear of retribution. Having outlined an overview of the photovoice method and its application with street traders, the next section focuses on fieldwork lessons and methodological reflections.

FIELDWORK LESSONS AND METHODOLOGICAL REFLECTIONS Our application of photovoice to street traders offered crucial perspectives that are relevant to other researchers who intend to apply this method with vulnerable urban populations. When conducting research with vulnerable participants, it is inevitable to be confronted with multiple dilemmas (Liamputtong, 2007, 2019), and our study was not an exception. In the next section, we discuss different methodological insights associated with utilising photovoice with vulnerable urban populations, like street traders. While the issues we discuss may not be exhaustive, we believe they provide a useful foundation for qualitative researchers who are interested in utilising photovoice with marginalised urban populations. Balancing Between Getting Data and Exposing Street Traders’ Spatial Strategies Photovoice, as a participatory visual method, provides unique opportunities for amplifying the voices and experiences of marginalised populations such as street traders (Bandauko & Arku, 2023b). However, in the context of street trading, where spatial dynamics, negotiation, and counterstrategies play a central role in protecting the livelihoods of street traders, data collection requires careful attention. In photovoice projects, the recognisability of people and places and ensuring participants’ confidentiality are some of the critical ethical considerations (Hannes & Parylo, 2014). In our study, we grappled with two key problems. On the one hand, we wanted to gather rich and detailed data through photographs captured by the traders themselves, offering insights into their daily experiences, challenges, and negotiation strategies within contested spaces. Yet, on the other hand, there was a need to do this without

152  Handbook of sensitive research in the social sciences compromising the confidentiality or safety of the participants, whose spatial strategies may be closely guarded due to fear of retribution from state and municipal authorities. For instance, some of the participants visually captured how they create ‘counter spaces’ to evade municipal enforcement and reduce the confiscation of their goods. The photographs taken by participants offer invaluable insights into the resourcefulness, adaptability, and resilience of street traders in the face of adversity. While such photographs provide deeper insights into how street traders lay claims to urban space, they can also potentially expose participants’ mundane strategies of resistance to hostile governance practices. Given the potential risks associated with the documentation and publication of these counter spaces, researchers must implement additional measures to safeguard the identities and locations of participants. This may include employing anonymisation techniques for photographs, using pseudonyms in written narratives, and refraining from disclosing specific details that could potentially compromise the security of individuals involved. Researchers must also consider de-identifying certain places in photographs or obtaining informed consent to protect the privacy of participants (Oakes et al., 2022; see also Chapter 18). During a photovoice interview, one of the participants asked, ‘What will we do with these pictures where people’s faces are showing? You know the municipal police guys are always after us once they understand some of these tricks’ (Daniel, photovoice participant). Another participant added, ‘I was afraid to take pictures of the police harassing street traders or collecting bribes because if they saw me doing that, it would not end well (Peter, photovoice participant). These sentiments serve as a stark reminder that social science researchers must strike a balance between capturing authentic narratives and safeguarding the safety and anonymity of participants, particularly in contexts where visibility could expose them to potential harm or reprisal. In reporting our findings, we blurred the images of participants who were involved in the creative and adaptive appropriation of public spaces, making it impossible for them to be facially recognised. By obscuring participants’ faces, we aimed to prevent any unintended repercussions that could arise from their identification, thereby safeguarding their ability to continue their livelihood activities without feeling a sense of insecurity. This is particularly important since street traders are often targeted by enforcement authorities because their livelihood strategies are deemed illegal, criminal, and antithetical to the modernisation of cities. Moreover, building strong relationships with participants based on trust, transparency, and mutual respect is fundamental to ensuring their well-being throughout the research process. By striking a careful balance between data collection and participant protection, researchers can navigate the complexities of photovoice methodology with sensitivity and integrity, ultimately amplifying the voices and experiences of street traders while upholding ethical standards. Handling Sensitive Gendered Experiences Female street traders are often confronted with unique challenges and vulnerabilities, including harassment, discrimination, and gender-based violence, which can significantly influence their spatial strategies and how they negotiate access to urban space. When deploying photovoice as a methodology to explore these experiences, researchers must approach the handling of sensitive gendered issues with the utmost care and consideration. Moreover, female street traders may hesitate to openly document their experiences, particularly those related to gender-based discrimination or violence, due to concerns about stigma, safety, or retaliation.

Navigating sensitivity in urban research  153 In our study, we discovered that female street traders were disproportionately affected by repressive practices from state and municipal police, including physical and sexual violence (Bandauko, 2024; Bandauko et al., 2023). Some of the women who participated in photovoice interviews shared deeply personal stories about how their gendered vulnerabilities negatively affect their daily economic activities. Some of these experiences can be emotionally disturbing and traumatising for both participants and researchers (Fenge et al., 2019). For example, in explaining one of the images in a photovoice interview, an elderly woman broke down while explaining how she was brutally assaulted by enforcement authorities despite her old age and other underlying vulnerabilities. While such experiences might indeed provide invaluable insights into the gendered dimensions of repressive aggression from authorities, it is important to acknowledge the potential risk of ‘opening old wounds’ for female street traders. Delving into past traumas or instances of gender-based violence can evoke deeply personal and painful memories, potentially retraumatising participants and causing psychological distress. Therefore, researchers must approach the documentation of these experiences with sensitivity and empathy. Incorporating trauma-informed practices into the photovoice methodology is essential to mitigate this risk and ensure the well-being of participants (Pichon et al., 2022). This involves creating a supportive and nonjudgmental space where participants feel empowered to share their stories at their own pace and comfort level. As such, researchers must prioritise creating a safe and supportive environment that encourages participation and ensures confidentiality. When research participants feel that they are in a safe space, they might feel more inclined to share some aspects of their lives that they may not have shared previously (Dickson-Swift et al., 2007; Liamputtong, 2007, 2020). Dealing With Participants’ Personal Life Stories Street traders, like any vulnerable participants, bring with them a wealth of personal life experiences that intricately intersect with their daily endeavours. Throughout our engagement with street traders in Harare, we frequently encountered instances where participants’ personal circumstances impacted their ability to participate fully in the photovoice activities. For instance, there were cases where some participants refrained from taking photographs due to recent bereavements, grappling with the loss of a loved one. During our study, one photovoice participant had to travel to his village to bury his father. These encounters underscored the multifaceted nature of street traders’ lives, where economic pursuits intersect with deeply personal challenges and obligations. As researchers, it is critical to navigate these moments with sensitivity and empathy. This includes creating a supportive and understanding environment where participants feel valued, heard, and respected, regardless of their ability to actively engage in the research process at any given moment. In our case, we had to give some participants extra time to take photos, regardless of our initial schedules. That flexibility is important as it demonstrates the researcher’s respect for participants’ own personal challenges. By doing so, researchers will protect the dignity of each participant, allowing them the space to prioritise their well-being and attend to their personal circumstances without judgment or pressure. By embracing a compassionate approach to these personal life stories, researchers can cultivate trust, foster meaningful connections, and ultimately, honour the humanity of street traders amidst their everyday struggles.

154  Handbook of sensitive research in the social sciences Managing Contentious Relations Between Street Traders and Urban Authorities The relationship between street traders and urban authorities is always contentious and hostile. In Harare, like in any other city in the Global South, municipal authorities and street traders are always engaged in the ‘cat and mouse’ game. This created complex challenges for participants who found it difficult to take photographs depicting harassment and victimisation of street traders by municipal police, as this would potentially place them in trouble. Because of the antagonistic relationship between city officials and street traders, some of the participants did not attend the photo exhibition because they felt such an event could trigger further victimisation and harassment. For instance, one participant told us that he does not trust the municipal officials and that attending the photo exhibition would further amplify tensions between authorities and street traders: ‘I do not trust council, so I will not attend the exhibition to protect myself because they do not want to see us’ (David, photovoice participant). The negative relationships between council officials and street traders create additional challenges when mobilising policymakers for the photo exhibition. For instance, during the photo exhibition, one municipal official commented, ‘We are not going to licence street traders and that will not change’. Although this comment was made subtly, it is a reflection that photovoice does not automatically translate to social change. In order to foster a comfortable atmosphere for participants during the photo exhibition, we initiated a briefing session alongside city officials and other leaders from civil society. It was emphasised that the session aimed at mutual learning rather than identifying faults. During this gathering, various crucial topics were addressed, including: (i) the overarching objectives of the study; (ii) an introduction to the photovoice methodology; and (iii) potential benefits of the photovoice findings for both urban authorities and civil society, among other pertinent aspects. Although both city officials and civil society leaders expressed interest in the photovoice approach during this briefing session, it became apparent that a single meeting was insufficient to mend the strained relations between municipal authorities and street traders. Establishing positive relationships is a protracted endeavour, often requiring a series of engagements with stakeholders such as street traders and their associations, civil society leaders, urban policymakers, and politicians. Regrettably, due to time constraints, our study was unable to facilitate such ongoing dialogue. Therefore, future researchers planning to use photovoice with vulnerable urban populations should invest in building strong partnerships over time, often targeting policymakers who are committed to social justice. Another important consideration from our experience is the selection of a neutral venue, where participants will feel safe and secure. Conducting the exhibition at the Town House might have intimidated participants since most of them had never interacted with public officials in formal settings. The selection of the venue should be done in consultation with photovoice participants. Alternatively, social science researchers do not necessarily have to complete the photovoice exhibition if they think it can lead to further marginalisation and vulnerability of the study population. The exhibition is important, but its usefulness should be judged on a case-by-case basis. For instance, Adams and Nyantakyi-Frimpong (2021) did not conduct the exhibition due to concerns regarding participants’ safety and security.

Navigating sensitivity in urban research  155 Tackling Power Dynamics Between the Researcher and Participants Studies involving vulnerable participants are always marred by entrenched power hierarchies. We were cognisant of our positions of power as academics, recognising our capacity to ‘decide what questions to ask, how to interpret the data collected, and where and in what form the results should be presented’ (Caretta & Riaño, 2016, p.258). Although photovoice’s primary focus is on empowering participants as active agents of their lived experiences, inherent power differences between researchers and participants are inevitable due to variations in socioeconomic status, education level, and institutional authority (Abma et al., 2022; Bandauko & Arku, 2023b, 2023a; Mukumbang & van Wyk, 2020). To address these power dynamics, researchers should adopt an approach that prioritises mutual respect, trust, and co-creation of knowledge. This involves actively listening to the perspectives and priorities of street traders, valuing their expertise and lived experiences. While we played a facilitator role in the photo interviews, the participants were capable of defining what is important to reduce the researcher bias embedded in the selection of specific images and themes used in the interviews (Hannes & Parylo, 2014; Simmonds et al., 2015). By allowing participants to choose the images that best reflected their everyday experiences, we disrupted traditional power imbalances inherent in social science research and empowered historically marginalised urban populations. Our project taught us that it is important for researchers to create a favourable environment for participants to collaborate in the construction of meaning associated with the photographs. By promoting genuine dialogue, shared decision-making, and reciprocal learning, researchers can create an inclusive and empowering research environment that centres the voices and agency of street traders in addressing multiple issues affecting their livelihoods.

CONCLUSION AND FUTURE DIRECTIONS The insights from this empirical study demonstrate that the deployment of photovoice with vulnerable urban populations, like street traders, raises complex ethical and methodological questions around balancing between obtaining data and exposing street traders’ spatial strategies, handling sensitive gendered experiences from female street traders, dealing with participants’ personal life stories, managing contentious relations between street traders and urban authorities, and tackling power dynamics between the researcher and participants. The chapter has discussed the complex challenges of conducting participatory photovoice with a culturally diverse and vulnerable category of urban residents, demonstrating the need for a flexible, adaptive and reflective approach. We reiterate that the issues we encountered were examples of ‘everyday ethics’ (Abma et al., 2022), that cannot be predicted or regulated by institutional research ethics guidelines. The reflections captured in this chapter are critical in providing advice to both established and early-career researchers working on sensitive topics. While this study was conducted with street traders, the experiences shared might resonate with different research contexts. Researchers, research supervisors, and ethics committees all have a role to play in ensuring that researchers have the necessary capacity to deal with issues they may encounter while conducting sensitive studies. Going forward, there is a need for more studies on the vulnerability of researchers in the field. There is a need to examine how the different experiences with

156  Handbook of sensitive research in the social sciences vulnerable populations impact researchers’ social, emotional, and psychological well-being. When conducting sensitive research, researchers often grapple with their own vulnerability, including emotional and psychological distress associated with listening to participants’ stories. These experiences warrant further investigation, and we believe that our chapter has provided relevant entry points to explore some of these issues further.

ACKNOWLEDGEMENTS We greatly appreciate the photovoice participants (street traders) in Harare for their active participation and enthusiasm in this project, despite the multiple challenges they faced. The support of the Zimbabwe Chamber of Informal Economy Association (ZCIEA) in recruiting photovoice participants is greatly appreciated. We are particularly indebted to Mr Mundawaro, ZCIEA Harare Chapter Territorial President, for his dedication to the success of the photovoice project. This study was supported by the Social Sciences and Humanities Research Council of Canada (SSHRC), International Development Research Center (IDRC), and the International Journal of Urban and Regional Research (IJURR) Foundation.

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11. Researcher-made drawings and researching sensitive topics Baldwin Van Gorp

INTRODUCTION Qualitative research methods have proven particularly useful in understanding the nuances of sensitive, challenging, and difficult topics in social science research (Silverio et al., 2022). These include topics such as child abuse, sexual behaviour, drug use, suicide, and political activism (Lee & Lee, 2012; Van Meter, 2000). However, what should be understood by sensitive research is not only determined by the subject of research but also by the vulnerability of the target group (Haider, 2022). Liamputtong (2007) argues that these groups are often literally and figuratively invisible, making it difficult to persuade them to participate in research. This reluctance may be justified, as their social position makes them vulnerable to stigma and public and economic exclusion. Engaging in research that solicits the participation of vulnerable individuals while potentially inflicting harm on them may be deemed ethically questionable. Sensitive research, therefore, requires sensitive researchers (see also Chapter 1 in this volume). The most vigilance is required when it comes to research on a sensitive topic with vulnerable groups as research participants. In this chapter, I present some avenues for mitigating obstacles encountered when examining sensitive issues among vulnerable groups. More specifically, I suggest making use of the drawing competencies of the researchers within the realm of arts-based methodologies. The rationale for doing so may stem from the need to respond to a number of stumbling blocks inherent in research on sensitive topics and vulnerable groups. There are all sorts of strategies described in the literature that can be used for this purpose, apart from arts-based methodologies, so this chapter deals with an approach that is complementary to other good practices (see also chapters in Part 2 of this volume). First, vulnerable groups are ‘hard to reach’. In their research on sex workers, Benoit et al. (2005) tried to overcome this barrier by setting up a collaboration between academics and community partner organisations. They discuss how the academics experienced scepticism and distrust from the partners who needed to be convinced of the value of collaborating with scientists who make statements from their ‘ivory towers’. Special attention is thus needed to strengthen mutual trust so that, for example, in an in-depth interview, a communication climate is created that is conducive to openness (Lee, 1993). Second, researchers may feel threatened because they are accused of being biased, or they may be subject to emotional harm and guilt when they hear stories about the trauma of the respondents (Dickson-Swift et al., 2007, 2008, 2009; see Chapters 1 & 3). Researchers, therefore, adopt approaches that both protect vulnerable participants and make them feel genuinely understood. Methods should be able to initiate deeper contact and move to a collaborative meaning-making process. A review of studies using participatory visual research methodologies to understand the experiences of newcomer children better showed that the participatory approach eliminates the asymmetrical 159

160  Handbook of sensitive research in the social sciences power structures inherent in the research subjects at issue here (Brown et al., 2020). The approach ensured that the children’s voices were truly heard, so they were more willing to share their diverse perspectives and experiences with the researchers. Third, respecting the privacy of particularly vulnerable individuals in scientific research is a major concern, which may interfere with any urge actually to show the results. The quest for authenticity and verifiability and the ethical principles of anonymity, confidentiality, and the granting of informed consent lead many researchers to dwell on these dilemmas in determining the appropriate method, especially if they wish to use visual materials (Clark, 2020). The purpose of this chapter is to discuss how researcher-made drawings can be useful in studying sensitive topics. First, the role images can play in research on vulnerable groups is examined in more detail. It then proceeds to discuss how to work specifically with drawings made by the researcher. Three examples of my own research serve as illustrative material and highlight some practical points of interest. In the concluding section, some avenues for future research are discussed.

THE ROLE OF VISUALS IN QUALITATIVE RESEARCH Within qualitative research, there is increasing interest in visual methods. Reasons for this visual trend can be found in a society where images dominate, but also in a need for research to initiate societal change (Mitchell, 2011). According to Banks (2001, p.179), social research should be an engagement, not a non-committal exercise in data collection. Indeed, visual research often reveals a great commitment to the research subject, where there is a need to act ethically and pursue truthfulness. A conventional question-and-answer method may prove inadequate, urging the researcher to opt for a comprehensive data-gathering strategy that is both orally and visually inspired. Visuals in qualitative research can make research findings insightful as a form of visual proof and as a way to engage an audience that is less verbally oriented. For instance, Nogueira (2015) conducted research on how workers in Brazil are ascending into a new middle class, building and remodelling their own homes while paying attention to the problems they experience in the process. The attention to the visual is evident in her method of data collection, but also in the use of visual elements in reporting. Instead of describing the actions and results of the diligence of these ‘battlers’, she displays them. This approach involves infographics, photographs, and sketches, all created by the author-researcher. Furthermore, visuals can express additional insights, especially in situations where respondents find it challenging to put their experiences into words, which is particularly relevant when addressing sensitive topics or involving vulnerable people. For example, in the photovoice method, the participants themselves can take pictures that form the basis of an in-depth conversation. This shifts the control to the respondents, allowing them to determine how they want themselves and their situation to be seen. Booth and Booth (2003), for instance, applied that methodology and revealed that mothers with learning disabilities attach great importance to home, family, and friends but often lack the necessary support in doing so. Another option is to ask participants to draw a situation. Broadbent et al. (2009) asked a group of students struggling with persistent headaches to sketch how they experienced their agony. Representing the force on the head they experienced, the size of the drawing, and the use of dark colours provided insight into how they experienced pain. As such, visuals can be used as modes of enquiry, modes of analysis, and modes of dissemination of research (Mitchell, 2011).

Researcher-made drawings and researching sensitive topics  161 The list below presents an overview of the different roles visuals can play in doing qualitative research on sensitive topics. Modes of Enquiry 1. Facilitating enhanced participant expression: visuals provide an alternative means for participants to express themselves, which can provide a more nuanced understanding of their perspectives on sensitive topics. 2. Replacing words with visual expressions: visuals can serve as metaphors to represent abstract and complex concepts that are difficult to express through words alone. 3. Transcending language barriers and cultural differences: visuals can make it possible to discuss sensitive topics with participants from diverse backgrounds. 4. Fostering empowerment: visuals enable participants to actively contribute to the research process, which can reduce feelings of powerlessness and victimisation related to sensitive topics. 5. Offering bridging and bonding properties: the use of visuals in research can have a threshold-lowering effect and, therefore, give both researchers and participants a sense of gratification, reducing the negative consequences of researching sensitive topics. Modes of Analysis 1. Generating rich and complementary data: visuals can yield rich data and can complement other data collection modes that can be analysed in various ways. 2. Providing access points to underlying layers: visuals offer an entrance to underlying experiences and emotions related to sensitive topics. Modes of Dissemination of Research 1. Enriching reports and results dissemination: visuals may clarify and enrich the presentation of research results, complementing or replacing textual descriptions. 2. Stimulating engagement building: visuals can lead to more truthful and open discussions of sensitive topics with various stakeholders. 3. Providing tools for education and advocacy: visuals can be powerful tools in science communication and educational programmes and can create awareness around sensitive topics. 4. Initiating social change: visuals have mobilising qualities.

RESEARCHER-MADE DRAWINGS Drawing is a specific tool that researchers can use when researching sensitive topics. For example, there is the possibility of having respondents draw how they experience certain issues (see Chapters 9, 14 & 27). In this contribution, however, it is about the researcher applying the technique, which is done in various disciplines, such as graphic medicine (see Van Gorp, 2021), urban studies (see. Chung, 2022), and anthropology (see Hendrickson, 2008). Unlike photography, there is no technology involved; having access to a pencil and a sheet of

162  Handbook of sensitive research in the social sciences paper is sufficient. Although drawing is an arts-based method, it is not about drawing as an art form. Only if a drawing is intended to present a realistic representation of reality do drawing skills potentially become essential. In other cases, it is a tactile, intimate skill, where the process is an end in itself (Cain, 2010; Venkatesan & Peter, 2018). This methodology is primarily about applying creativity to see connections, discover new ideas, and deepen researchers’ understanding of their research topics (Fish, 2019; Strassmann, 2020). When dealing with sensitive topics, employing creativity is appropriate to determine exactly where the topic’s ‘sensitivity’ is localised, going beyond it, discerning the emotions at play, and revealing aspects that, both literally and metaphorically, could remain invisible within a purely linguistic description of a situation. Or, as Fish (2019) formulates it: ‘Drawing and painting is a research methodology that provides data that can be looked at critically, synthesized, and made useful to others. Images are effective tools for communication, carrying stories as social justice work and raising consciousness about marginalized groups of people’. Drawing helps in observation by prompting participants to visually scan a situation to perceive meaningful details that may escape attention. Drawing is thus a tool of analysis, helping the drawing practitioner to truly observe and understand what can be seen (Causey, 2017). The process itself is useful and not something that can be compared to routinely collecting data, analysing them, and coming to an understanding. The act of drawing takes some time and can never be a snapshot like taking a picture. Being present as a researcher while sketching at a location near participants provides additional opportunities, as the researcher feels and might be perceived less as an intruder. Drawing onsite performs an inviting act that often arouses curiosity among the participants present and other bystanders. As such, drawing can encourage contact with vulnerable groups. Furthermore, line drawings offer opportunities to make complex and abstract issues discussable in a low-threshold manner, or, conversely, to visualise complex and abstract topics. The drawings can be made in advance by the researcher to be used as elicitation material in an interview. Another opportunity is that the drawings are made on the spot and possibly form the basis of an interview. Or they can be made based on a series of interviews, partly from the researcher’s imagination. Van Wolputte (2017b) created a graphical account of a study in Kaoko, a region in Namibia. Remarkably, in it he depicts the ancestors of the interlocutors as living individuals. All characters wear masks on their faces, despite masks not being part of the local culture. He justifies his choices by stating that he wanted to do justice to the worldview of the participants, for whom the ancestors are as real as the living, and that the masks would make all portrayed people unrecognisable (Van Wolputte, 2017a). More details, trade-offs, and suggestions are covered in a discussion of research projects in which researcher-made drawings have been used in research on sensitive issues among vulnerable groups. In the first study, cartoons were used to discuss radicalisation with Muslim youth in Belgian municipalities such as Antwerp, Verviers, and Molenbeek (Figoureux & Van Gorp, 2021). In another study, I used sketches to gain insight into how persons without legal residence go through a hunger strike (Van Gorp, 2024). Finally, in the third study, drawings were used to depict elderly people’s perceptions of loneliness in pictures and words (Van Engeland & Van Gorp, 2023).

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WORKING WITH CARTOONS TO MAKE ABSTRACT FRAMES DISCUSSABLE Vulnerable individuals can be very suspicious of researchers who want to discuss sensitive topics with them (Liamputtong, 2007). This makes it essential to work with intermediaries who already have access to these youngsters. In the study of radicalisation among Muslim youth in the aftermath of the 2016 Brussels attacks, youth workers were invited to be part of the research team, with the idea that they could help decrease the barrier to entry. However, they did not want to risk their carefully built relationship of trust with the Muslim youth for yet another research project on radicalisation (De Backer, 2022). It was necessary to negotiate and look for an approach that limited the possible harmful consequences for the respondents. The project, therefore, worked with visualisations. The researchers turned an overview of 12 frames and counter-frames around radicalisation (Figoureux & Van Gorp, 2020) into cartoons (see Figure 11.1 for an example). A frame can be thought of as a frame of thought that helps to make sense of reality. Yet, it is a difficult academic concept to concretise. The cartoons helped to make each frame tangible. An alternative could have been to incorporate multiple frames within one cartoon to play with contrasts and contradictions between different frames. This modus operandi was adopted, for example, in a study in which frames around migration were discussed in a mixed class group of people with a migration background (Huyge et al., 2021). In this way, multiple frames could also be discussed with a limited set of cartoons, requiring less attention from respondents within an interview, which is the case when a long set of frames needs to be discussed. The visual nature of the drawings and jokes turned out to be threshold-reducing. Even stereotypical ideas, such as a suicide bomber blowing himself up in order to surround himself with 72 virgins in the afterlife, could be brought up for discussion. The participants understood that cartoons often magnify and question stereotypes. For instance, there were cartoons depicting prototypical BPoC youths, loitering while wearing hoodies and sportswear. But as shown in Figure 11.1, there were also white characters. By consciously weighing each choice and paying attention to diversity, the artistic freedom of the creators could be brought up for discussion. However, the creators of the cartoons did take into account that Muslims are particularly opposed to the visual representation of Prophet Muhammad. The cartoons aimed to make a sensitive subject discussable, but not to offend the respondents. Therefore, it is always advisable to present the cartoons’ designs to experts on the subject matter under investigation Practically speaking, it is recommended that the cartoons be printed on cards. The respondents received a set in their hands and could go through them at their own pace, spreading them out in front of them and arranging the cartoons according to their personal appreciation. This provided the respondents with agency. The advantage of working with the same stack of cartoons—although they were shuffled each time so that they were presented at random—was that through that approach, there was a protocol for each respondent or focus group to address 12 different angles of making meaning of radicalisation. This approach also helped the analysis of the interview transcripts to be carried out in a structured and systematic way. Such an elicitation method could alternatively involve working with cartoons from the press or existing photographs. This choice was also considered, but then the discussion would be more about the approach of the news media and not about ideas that exist around radicalisation. Moreover, a photo would always refer to a specific situation or person, and not to the ideas presented in general. Nor was it possible to find a suitable photo for each of the 12

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Source: Artwork by the author. Note: For an overview of all frames, see Figoureux & Van Gorp, 2021.

Figure 11.1  Cartoon visualising the frame ‘Puberty‘ to discuss radicalisation with youngsters with a Muslim background possible perspectives on radicalisation. This was not obvious with cartoons either, but it did eventually succeed. Moreover, more unity of style could then be guaranteed. This requires some creativity on the part of the researchers. Furthermore, by working with drawings, the researchers went against the prevailing perception of what social scientists usually do. This also aroused sympathy among other parties involved in the study.

DRAWINGS TO REPRESENT THE LIVED EXPERIENCE OF HUNGER STRIKERS In late May 2021, an estimated 500 undocumented immigrants occupying a church in the centre of Brussels decided to go on a hunger strike. To gain a deeper understanding of how the participants experienced the strike, I made a whole series of sketches on the spot, directly in ink, which I later elaborated on and added colouring. A hunger strike is to some extent a nonverbal event, to which the activity of drawing fitted well. My activities as a researcher invited

Researcher-made drawings and researching sensitive topics  165 conversations with the activists, although sketching was primarily a way to observe. My intention was to remain as invisible as possible because when my presence was noted, some hunger strikers had the tendency to encourage me to portray specific hunger strikers, usually those who were already the most advanced in the process. Likewise, they then tended to pose, for example, by placing a towel over their heads. The location was a crowded Baroque church full of ornaments, and the many hunger strikers present used colourful blankets and were surrounded by luggage. The sketches were therefore selective in depicting meaningful details. Things that had long gone unnoticed by me suddenly stood out. For example, I noticed that the Muslim hunger strikers used the statues of saints as coat racks for their clothes and wet towels. Formulating this in words seems more likely to imply a value judgement. Showing the same thing without further comment offers the viewer a chance to attach meaning to it for themselves. An image, compared to words, is open to multiple interpretations and is always partly ambiguous. Drawing hunger strikers has the added advantage of showing them and their emotions without depicting them recognisably. Photographic likeness of persons is a skill that artists may strive for, but in this case, it was absolutely unnecessary. Being able to depict the impression a person makes, the posture, and facial expressions is more important. For example, the persons depicted in Figures 11.2 and 11.3 are the same person. Hunger made it difficult for the man to walk. But outside on the bench, he enjoyed a conversation while smoking a cigarette and drinking tea. Images like these look very different from the images that were seen in the traditional media of the hunger striker. These mainly depict pictures of people lying in line, denouncing hunger. I have seen a lot of hunger strikers passing time on cell phones or playing with their children, but these images were not shown in the traditional media. The drawings served several purposes. First, they were analysed further and formed the basis for a visual essay (Van Gorp, 2024). Furthermore, a selection of the drawings was exhibited in the church where the hunger strike took place to allow people who were not direct witnesses to the hunger strike to form a picture of it. The emotions represented in the drawings allowed for empathy, it turned out, but even so, raised questions. In addition, the drawings could trigger discussions, namely whether it is fair that people put to illegal work in harsh conditions by local businessmen do not receive recognition for it, after all these years, in the form of a resident’s permit or citizenship. This was the demand the hunger strikers formulated when they decided to proceed with their action. A challenge with this study was that the organisers were largely willing to allow the researcher to be present during the hunger strike, but their motivations to do so probably did not quite match the timeline that doing scientific research requires. Ultimately, the success of a hunger strike depends on the level of visibility, which explains why many hunger strikes take place in public spaces (Pellander & Horsti, 2018). In this case, a church was involved to provide the necessary shelter, so efforts were made to keep the outside world informed of what was going on inside. In addition to the support of the press, doctors, and interest groups, the support of researchers was also welcome, I was assured. But the timing of my work did not fit well with the urgency at play for the hunger strikers. Scientific research can help raise awareness, but that cannot be done in the short term. Furthermore, a researcher might want to observe a situation more like an outsider and thus be more likely to want to occupy an impartial position. These dilemmas can create fascinating conversations with activists but equally complicate access to a site.

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Source: Artwork by the author.

Figure 11.2  A sketch of a hunger striker during the occupation of the Church of St. John the Baptist at the Béguinage in Brussels, March 2021

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Source: Artwork by the author.

Figure 11.3  A sketch of a hunger striker smoking a cigarette and drinking sugared tea outside the Church of St. John the Baptist at the Béguinage in Brussels, March 20

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PICTURING THE LONELINESS OF THE ELDERLY For her master’s thesis, Sarah Van Engeland (see Van Engeland & Van Gorp, 2023) spoke with a series of elderly people. She did not make sketches during the interviews but had in-depth conversations about loneliness with eight elderly persons (M = 78 years) who lived at home. She clustered the most telling quotes around a number of themes, such as marital loneliness and grief, and elaborated each theme into a full-page drawing and placed the related quotes around it (see Figure 11.4). Therefore, a challenge in this study was to ask questions during the interviews to envision as clearly as possible situations in which loneliness plays a role, in order to visualise them afterwards in a drawing. The artist chose to draw all meaningful situations and telling details on separate sheets of paper and colour them in. Only in a second phase were those drawings, along with handwritten quotes, made into a composition using Photoshop. Drawings have the disadvantage of being a representation of a concrete situation, making them seem anecdotal. Generalisability is thereby difficult to achieve. But this study shows that it is possible to represent ideas that recur regularly in a prototypical representation. The author created new prototypical characters based on impressions she gained during various interviews. The plan to work with drawings was key to convincing elderly organisations to cooperate and allowing the researcher to interview several elderly people struggling with loneliness. In this case, too, the drawings formed the basis for an exhibition, where they were on display in large format prints.​

CONCLUSION AND FUTURE DIRECTIONS The use of researcher-created drawings to study sensitive issues among vulnerable groups deserves more appreciation in the social sciences. In many disciplines, words and quantifications are seen as the preferred form of data collection (survey, interview), data (numerical evidence), and data presentation (numerical tables, descriptions, and so on). The presence of drawing skills on the part of the researcher is not a strict condition, as collaboration between social scientists and graphic artists is also a possibility (see, for instance, Kuipers & Ghedini, 2021). However, the use of drawings in research should not be motivated solely by their potential for science communication or from an intention to vulgarise results. Drawing helps to understand visual, non-verbal aspects of reality. It is often the case that a researcher feels the need to describe, explain, or determine how a visual image should be understood. With regard to sensitive topics, however, that description may involve a value judgement. Showing something, especially if it relates to a sensitive topic or if vulnerable people are involved, allows the viewer to give meaning to the image. The utilisation of drawings is also associated with a desire to demonstrate and communicate without imposing personal judgements or interpretations on reality. With regard to sensitive subjects, this is often a crucial consideration. Moreover, depicting vulnerable people through drawings offers the advantage that it allows them to be left with more dignity. A drawn human face that does not seek a photographic likeness offers the portrayed vulnerable persons the opportunity to deny that it is they who are depicted. Letting the facts speak for themselves requires habituation and a different mindset from peers and audiences. Drawings are more open and allow for multiple interpretations. As a

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Source: Artwork by Sarah Van Engeland, used with permission.

Figure 11.4  Loneliness among the elderly

170  Handbook of sensitive research in the social sciences result, there may be a perception that the conclusions of drawing-based research are ambiguous. With regard to sensitive topics, this might be the preferred approach. On the other hand, the danger of bias in the interpretative remains. The hunger strikers in the Béguinage Church ignored the order to leave the territory for years. They chose to stay and took up the offer of uninsured and low-wage work. Could they then ‘blackmail’ others and enforce a residence permit through the threat of starving themselves to death? The drawings did not answer that question. They paint a picture of which emotions are involved in such a hunger strike. They showed scenes not seen in traditional media, such as hunger strikers playing with their children, listening to music, taking a walk, smoking, and drinking tea. These images do not fit the clichéd image of what is usually expected from a hunger strike, but are an essential part of it. In sum, visual representations, including researcher-created drawings, provide a means to convey personal narratives, express emotions, and stimulate a profound comprehension, all while upholding ethical consideration for the vulnerable target group (Jellema et al., 2022). This chapter presented three examples in which working with drawings provided the key for the researcher to talk about sensitive issues (radicalisation, illegal stay, loneliness) with vulnerable groups (Muslim youths from neighbourhoods in Brussels, hunger-striking undocumented immigrants, and elderly people). In the first case, cartoons formed the elicitation material. In the other two cases, drawings were part of the collected data and formed the basis for an exhibition. In the future, an approach using researcher-made drawings to study sensitive topics deserves more attention. There are at least six avenues for the future. First, the researcher-made drawings can form the basis for audience outreach, making the subject and results accessible to a wider group. But the drawings should not just have the status of making findings more accessible. The drawings should be seen as a special form of data and form the basis of specific analyses. This requires the researcher to be willing to accept that the meaning of an image is rarely straightforward. The polysemic nature of a drawing should be seen as meaningful and thus a strength, not a weakness. The same applies to reviewers. From personal experience, I know that reviewers are unsure how to respond to drawings. They tend to make their judgements primarily based on the accompanying text. Alleged shortcomings in the text may turn out to weigh heavily in the final judgement, so much so that the impression is that they have not looked at the drawings, or see them only as illustrative material and not as central to the study. There should be a specific assessment framework for research in which drawings play a central role. Second, what might be particularly fruitful is that the researcher’s drawings could potentially serve as a catalyst for encouraging respondents to actively engage in creative endeavours, such as drawing their own cartoons. By promoting participatory action research, there can be a dialogue between researcher and participants based on the created visual material, without necessarily attaching specific interpretations to it by starting to describe it explicitly in words. My personal impression is that a drawing artist can express something consciously with a drawing, but a drawing can also unconsciously reveal aspects and deep feelings of its creator. Specifically, for researchers used to approaching subjects rationally, it can be particularly insightful to let the subconscious and intuition guide the pencil. For instance, the first drafts of cartoons around radicalisation also revealed some of the creator’s own stereotypical thoughts. Third, with regard to the use of drawings, an ethical framework and guidelines could be further considered in the future. Are specific ethical guidelines needed with regard to drawing? Do the same rules apply as for taking photographs? After all, the intention is still to use

Researcher-made drawings and researching sensitive topics  171 the drawings to depict people with a face, albeit not recognisably. Must the person portrayed give ethical consent even in this respect? What about sketches in public spaces, where you observe people’s behaviour and attitudes and depict them in drawings? Can you draw someone without their consent, or observe someone and use them afterwards as the basis for an imaginary person? It seems obvious that more proactive action could be taken by providing explanations, possibly via handing out a flyer explaining the purpose of the study. However, this approach may result in individuals tending to pose and no longer displaying their natural behaviour. Additionally, it deserves attention on an ethical level that vulnerable groups may have high expectations of third parties. This applies to journalists, policymakers, and also to their cooperation with academics. In the case of the drawings at the hunger strike, it was true that the activists expected too much from a researcher who was in their midst and close to them for a while. Vulnerable groups expect those whom they perceive as privileged to have the power to get things done promptly, which can result in disappointment. Fourth, with the rise of AI applications that allow the generation of fictional but realisticlooking images, exactly what happens on paper in this chapter can also be realised through AI technology. It is then also possible to depict realistic-looking situations and people. This is certainly a track that can be pursued further in the future. The advantage of non-technologically supported graphic drawings is that it is clear to the viewer that the drawing is the work of a person, suggesting personal involvement and interpretation. With AI-generated images, a spectator is more likely to be misled. Fifth, the use of drawings presupposes a qualitative approach. It makes sense to combine this approach with other methods. Furthermore, it may be useful to compare results of quantitative studies with those of qualitative studies. After all, both approaches have advantages and disadvantages when studying sensitive subjects and vulnerable populations. A final avenue for further research is the possibility of investigating whether the use of drawings, for example in raising awareness and campaigning, is useful in stigma reduction associated with sensitive topics. Drawings are visual and are often less harsh and confrontational than photographic material. A drawing leaves more to the imagination of the viewer and can therefore be thought-provoking. Note that the drawing does not have to be made by the researchers themselves, as this chapter seems to suggest. It is equally possible to involve artists or researchers in the arts in a project. In the future, it can thus encourage interdisciplinary collaboration, bringing together expertise from different fields to address the multifaceted challenges of researching sensitive topics and vulnerable people.

REFERENCES Banks, M. (2001). Visual methods in social research. Sage. Benoit, C., Jansson, M., Millar, A., & Phillips, R. (2005). Community-academic research on hard-toreach populations: Benefits and challenges. Qualitative Health Research, 15(2), 263–282. Booth, T. & Booth, W. (2003). In the Frame: Photovoice and mothers with learning difficulties. Disability & Society, 18(4), 431–442. https://doi​.org​/10​.1080​/0968759032000080986. Broadbent, E., Niederhoffer, K., Hague, T., Corter, A., & Reynolds, L. (2009). Headache sufferers’ drawings reflect distress, disability and illness perceptions. Journal of Psychosomatic Research, 66(5), 465–470.

172  Handbook of sensitive research in the social sciences Brown, A., Spencer, R., McIsaac, J.-L., & Howard, V. (2020). Drawing out their stories: A scoping review of participatory visual research methods with newcomer children. International Journal of Qualitative Methods, 19. https://doi​.org​/10​.1177​/1609406920933394. Cain, P. (2010). Drawing: The enactive evolution of the practitioner. Bristol: Intellect. Causey, A. (2017). Drawn to see: Drawing as an ethnographic method. Toronto: University of Toronto Press. Chung, S. S.-Y. (2022). RE/MAP 2.0 in Tokyo: drawing on local stories to draw out hidden realities. Visual Studies, 37(5), 603–619. Clark, A. (2020). Visual ethics beyond crossroads. In L. Pauwels & D. Mannay (eds), Visual research methods (2nd ed.) (pp.692–693). Sage. De Backer, M. (2022). Co-constructing participatory ethics to address hierarchy and inequality: Social work ethics in research practice. Qualitative Research, 22(5), 712–728. Dickson-Swift, V., James, E. L., Kippen, S., & Liamputtong, P. (2007). Doing sensitive research: what challenges do qualitative researchers face? Qualitative Research, 7(3), 327–353. Dickson-Swift, V., James, E. L., Kippen, S., & Liamputtong, P. (2008). Risk to researchers in qualitative research on sensitive topics: Issues and strategies. Qualitative Health Research, 18(1), 133–144. Dickson-Swift, V., James, E. L., Kippen, S., & Liamputtong, P. (2009). Researching sensitive topics: Qualitative research as emotion work. Qualitative Research, 9(1), 61–79. Figoureux, M. & Van Gorp, B. (2020). The framing of radicalisation in the Belgian societal debate: a contagious threat or youthful naivety? Critical Studies on Terrorism, 13(2), 237–257. Figoureux, M. & Van Gorp, B. (2021). Cartoon elicitation: Can drawings facilitate interviews on sensitive topics? International Journal of Qualitative Methods, 20. https://doi​.org​/10​.1177​ /16094069211044916. Fish, B. J. (2019). Drawing and painting research. In P. Leavy (ed.), Handbook of arts-based research (pp.336–354). New York: The Guilford Press. Haider, S. (2022). Sensitive research in social work. Springer. Hendrickson, C. (2008). Visual field notes: Drawing insights in the Yucatan. Visual Anthropology Review, 24(2), 117–132. Huyge, E., Vandenberghe, H., De Smedt, J., Bertrand, M., & Meylemans, E. (2021). Other talk. Een onderzoek naar de attitudes over migratie en mediagebruik bij jongeren in Vlaanderen. Antwerp: Stamp Media Jellema, P., Annemans, M., & Heylighen, A. (2022). Drawing the researcher into data: drawing as an analytical tool in qualitative research. Qualitative Research, 23(5), 1398–1417. https://doi​.org​/10​.1177​ /14687941221079530. Kuipers, G. & Ghedini, F. (2021). Beauty: Triggering the sociological imagination with a webcomic. Sociologica, 15(1), 143–162. Lee, R. M. (1993). Doing research on sensitive topics. Sage. Lee, Y.-O. & Lee, R. M. (2012). Methodological research on “sensitive” topics: A decade review. Bulletin of Sociological Methodology/Bulletin de Méthodologie Sociologique, 114(1), 35–49. Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. London: Sage. Mitchell, C. (2011). Doing visual research. Sage. Nogueira, P. (2015). “Battlers” and their homes: About self-production of residences made by the Brazilian new middle class. Social Inclusion, 3(2), 44–61. Pellander, S. & Horsti, K. (2018). Visibility in mediated borderscapes: The hunger strike of asylum seekers as an embodiment of border violence. Political Geography, 66, 161–170. Silverio, S. A., Sheen, K. S., Bramante, A., Knighting, K., Koops, T. U., Montgomery, E., November, L., Soulsby, L. K., Stevenson, J. H., & Watkins, M. (2022). Sensitive, challenging, and difficult topics: Experiences and practical considerations for qualitative researchers. International Journal of Qualitative Methods, 21. https://doi​.org​/10​.1177​/16094069221124739. Strassmann, J. E. (2020). How to increase creativity in research. In W. Banzhaf, B. H. C. Cheng, K. Deb, K. E. Holekamp, R. E. Lenski, C. Ofria, R. T. Pennock, W. F. Punch, & D. J. Whittaker (eds), Evolution in action: Past, present and future: A Festschrift in honor of Erik D. Goodman (pp.499– 512). Cham: Springer.

Researcher-made drawings and researching sensitive topics  173 Van Engeland, S. & Van Gorp, B. (2023). Tekenen van sociale en emotionele eenzaamheid bij ouderen. Faculty of Arts, KU Leuven. Van Gorp, B. (2021). Face masks as floating signifiers during the COVID-19 pandemic in Belgium. Visual Studies, 36(2), 124–132. Van Gorp, B. (2024). An observational sketch essay of an undocumented immigrant hunger strike in Brussels. Visual Communication. Advance online publication. https://doi​ .org​ /10​ .1177​ /14703572241233644. Van Meter, K. M. (2000). Sensitive topics-sensitive questions: Overview of the sociological research literature. Bulletin of Sociological Methodology/Bulletin de Méthodologie Sociologique, 68(1), 59–78. Van Wolputte, S. (2017a). Six notes: Afterthoughts. Visual Anthropology Review, 33(2), 191–194. Van Wolputte, S. (2017b). A tale of six circles: A travelogue? Visual Anthropology Review, 33(2), 177–190. Venkatesan, S. & Peter, A. M. (2018). ‘I want to live, I want to draw’: The poetics of drawing and graphic medicine. Journal of Creative Communications, 13(2), 104–116.

12. Music elicitation and the art of listening Jade Levell

INTRODUCTION A song is a historical object and a mercurial carrier of multiple meanings … A song can be a means of seduction as well as a sedative, a dagger to the heart, a buoy, an escape hatch. It is something we can turn on and off, but it can also catch us by surprise. A song has a consciousness, almost, a life of its own. (Rogers, 2022, p.6)

As the quotation above highlights, music is a medium of communication that has the ability to inspire a huge range of emotions and responses. Music spans many genres and is an inclusive tool to use to elicit life stories from different participant groups. The universal appreciation of music in some form also provides an effective bridge of understanding between people from very different standpoints or backgrounds, which supports its effectiveness. Music elicitation is a relatively newer research methodology, although it has a longer history in the journalistic tradition, in particular as popularised by the BBC Radio 4 programme, Desert Island Discs. This programme features celebrities who are asked to provide seven music tracks to accompany the sharing of their life story. It has been running since 1941 (BBC, 2020). Its successful format relies on the simplicity and empathy-inspiring activity of sharing music and stories in an interview format, with the underlying premise that there is an interconnection between participants’ music choices and life stories. The success of the programme has inspired many researchers to use music as a tool both to support and structure their interviews. Allett (2010, 2011) coined the term ‘music elicitation’ in her study of metal music fandom. In this study, Allett participated in group interviews, drawing on the dynamics of ‘memory work’ (Haug, 1999). A collaborative space was created to share music and stories in a group setting. The application of music elicitation in international research, where researchers use the method to elicit the life stories of participants from another country and socio-political context, has been gradually increasing. One notable example was Luke de Noronha’s (2020) ‘Deportation Discs’ study. Although not referred to as music elicitation, it was a study that used the principle of the radio programme Desert Island Discs and employed the technique of music-enabled interviews with people who had been deported from the UK to Jamaica (BBC, 2020). De Noronha discussed how the use of music in this context was conducted as a way to ‘bear witness’ to the impact of state violence on deported individuals. The use of music elicitation in the development sector is an emerging application of the method. One notable example is the recent research that used the technique of music elicitation to carry out musicenhanced interviews with people displaced by violence in Colombia (Marsh, Armijos Burneo and Few, 2020). Music was utilised as an interview tool, acting as a non-invasive technique that was suitable due to the traumatic histories of the research participants. Marsh and colleagues found that music interviews, as opposed to more traditional formats, were an antidote to the high levels of distrust that participants felt in their prior experiences with the authorities. Participants reported high levels of previous distrust, discrimination, and disbelief in their 174

Music elicitation and the art of listening  175 experiences, resulting in a sense of powerlessness. Music opened up a de-territorialised space in which the participants were able to freely articulate their experiences and memories in a way they chose. The authors noted that ‘song lyrics offered resources for understanding and articulating their own identity’ (Marsh, Armijos Burneo and Few, 2020, p.151). In order to conceptualise the importance of ethical practice with ‘sensitive’ research topics, it is essential to consider what vulnerability itself means in the research context (see Chapter 1 in this volume). This includes vulnerability to harm for both the researcher and those researched. For those who research childhood trauma, there is an inherent vulnerability not only in the experience itself of violence and harm but also in the fact that a vulnerable state can be induced by the process of retelling. At times, the question of research sensitivity is centred purely on the ethical implications of our role as researchers. In short, how to do no harm to the participants. In this consideration, we, as researchers, are weighed down by our institutional reputations and our duty of care, both legally and morally. Mallon and colleagues (2021, p.518) looked at the aspects involved in sensitive research and focused on what they called ‘two key elements’: ‘the inherent sensitive or taboo qualities of the research topic itself and secondly the methodological and practical means of sensitively addressing such “sensitive” issues’. In the use of music elicitation, however, it is a methodology that provides space for the sensitivities not only of the participants but also of the researcher. It promotes curious enquiry within the research dynamic in both directions. It reduces the hierarchies and imbalances of power that traditional methods can inspire: those with questions and agendas (researchers) and those who are subject to the inquisition (researched). Instead, by engaging in the act of co-listening to music, it engages primarily with the humanity of both parties. Music elicitation, as used to gather life stories, sits broadly within narrative research as a sub-field. Narrative research concerns itself with storytelling and oral history traditions, which are not focused on the ‘truth’ in an objective sense but rather on the processes of human sense-making and the techniques of memory that humans use to understand their place in their individual worlds and histories. Instead of the demographic facts around a person’s experiences, we focus instead on the tales that they weave about themselves. As Les Back (2013) argues, qualitative research is actually about the ‘art of listening’. This simple skill can sometimes be lost amid the pursuit of methodological innovation and keenness to gather the most ‘data’. This can reproduce the tendency to see the researcher as a neutral observer/outsider in the research dynamic. However, in the field of narrative research, a more nuanced and coproductive perspective is foregrounded. As Ratnam (2019, p.19) notes, ‘storytelling involves verbal and non-verbal modalities that help researchers to understand places and experiences … where a symbiotic relationship between the participant and the narrative is produced’. By explicitly acknowledging the relational dynamic of storytelling as both a process of hearing and being heard, we make visible the power between the researcher and researched in order to disrupt it.

THE ART OF LISTENING The transfer of music as an elicitation tool to interdisciplinary social science research is somehow unsurprising. Les Back (2013, p.5) contends that sociology is a ‘listener’s art’; although he warns that it cannot be taken for granted as something researchers inherently know how to do, but rather, it is a skill that needs to be acquired. However, there is curiously little training

176  Handbook of sensitive research in the social sciences offered within academia to students or scholars about how to develop these listening skills and dig deeper into what listening actively involves. In order to discuss the ways in which listening is a multi-modal embodied practice, Wood and Chung (2023) have gained inspiration from the Chinese character for the word listening: Ting. The character is made up of four elements: ears, eyes, mind and heart. In this formation, it symbolises the importance not only of listening to the sounds but also of seeing non-verbal cues, giving undivided attention, and empathy as an inherent part of active listening (Wood & Chung, 2023). This perspective denotes listening as both an embodied and emotional practice (Mallon et al., 2021). Wood and Chung note that the determination of successful listening lies with whether the speaker ultimately feels heard. Listening is a collaborative process between both parties, which Ratnam (2019, p.19) articulates as ‘being a companion on a journey’. This metaphor works well as it emphasises the act of telling and listening being a potentially transformative exploration that occurs relationally. The key distinction between this and conventional notions of telling as relaying ‘truth’ is the emphasis on the transformative narrative process as impacting the story. Narrative research as a wider field has developed in many directions in order to understand more deeply the ways in which people use stories to make sense of their lives. According to narrative criminology, the self is constituted within and through the stories that we tell (Presser & Sandberg, 2015). In short, this constitutive viewpoint sees that ‘narratives produce experience even as experience produces narratives’ (Presser & Sandberg, 2015, p.4). As academic scholarship refocused on the research process in order to expose the conscious and unconscious biases that underpinned knowledge production, interest also grew in social sciences concerned with the inner worlds of human subjectivity. Stanley (2017, p.xi) writes: The idea of the narratable self conjoins subjectivity and interiority with relationality and contextuality. Telling about lives is both a material and an empirical, and also a discursive, activity, for ‘things’ are discursively known and told about, and ‘words’ have material reference and consequence. Also self is not entirely discursively constituted, and while having agency, this is not in circumstances of people’s own making.

This view of the storied self actively challenges the idea of objectivity and truth in research. Interestingly, when we were in the planning stages of the research, a core concern of some of the wider partners was focused on the notion of ‘truth’. They doubted whether incarcerated men involved with SOC would be likely to tell a ‘truthful’ account of their experiences. I kept reiterating that, actually, truth was not a goal, and in fact, when anyone tells an account of their life, they are actually telling a story; narrating an account of their own perspective and experience. Successful listening requires a ‘suspension of our judgements and above all our prejudices’ (Davies, 2014, p.21). This takes on further importance when researching individuals who are in contact with the criminal justice system, for instance, in prison (Levell, 2024). Herrity (2024, p.4) notes that ‘Listening … carries particular potency in a place where people so frequently feel unheard … listeners [are] important in a place where distress and desperation feature’. In such contexts of sensitive research, it becomes important for professionals, as both researchers and supporters, to adapt ourpractices to create spaces of trust and authentic listening. The role of professionals in making others feel heard has gained increasing traction in recent years. In a radical social work and research collective under the bracket of ‘Breaking the Boundaries Collective’, the role of practitioners-as-activists who actively ‘create the space

Music elicitation and the art of listening  177 for those voices to be heard and listened to’ through disrupting ‘the traditional and hegemonic notion of ‘professional boundaries’ is centred (Darley et al., 2024, p.8). Co-listening to music together as an interactive process can lead to interpretation becoming a shared event, which ‘affirms the move in qualitative research toward valuing intersubjective coexistence and radical relatedness’ (dos Santos & Wagner, 2018, p.7). Through this act of sonic sharing, ‘the research encounter is de/reterritorialized’ (dos Santos & Wagner, 2018, p.7). An important aspect of listening is the process of building trust first. This can be difficult to do within a relationship when researchers only meet the participant at the point of the interview. Something that was noted in some interviews was the way in which the participants found themselves opening up when they ordinarily would not. Music elicitation as a technique somehow supports rapid trust-building between participants and the interviewer. This is significant in both the current research as well as my prior context (Levell, 2019), both of which examine the life stories of very marginalised, criminalised men. It was also not what had been expected by members of the wider community whom I had consulted with prior to the fieldwork, some of whom noted that in Albania, men in this position would not speak alone, especially when meeting someone for the first time. In the following example, readers can see the way in which the openness of the interviewer helped build trust with the participant. Instead of badgering him with questions, she was open that he could leave at any time. Safety has many dimensions, including physical safety; safety from discriminatory or oppressive policies; the safety that arises through familiarity with the practices and relationships that exist within a particular space; and creative safety, which refers to the rules of engagement for creative processes that enable creative risks to be taken without fear of vulnerability or exposure (Howell, 2023, p.10).

In my prior research, I heard many stories of childhood adversity, including grief and bereavement, after the participant’s father had died when he was five years old. It opened up wider narratives on gender, the pressures on him as fatherless, and his relationship with his mother. Readers can see in this excerpt the way in which hip-hop can be a vehicle for very sensitive issues. The analysis of the data found that there was a range of adverse childhood experiences that impacted young people. These ranged from abuse, violence, and neglect, as well as the loss of a significant supportive figure, such as a key parent, through death, estrangement, or migration. Several participants discussed the impact of such losses on their security and family collective. This may have impacted their desire to instead identify with an extra-familial peer group in place of the lost family security. The craving for love from both mothers and fathers was discussed vividly at times, aided by the use of emotive song (hip-hop) lyrics.

PRINCIPLES OF FEMINIST RESEARCH WITH MUSIC ELICITATION Sensitive research often means engaging with people who are both vulnerable and marginalised due to their experiences of abuse, oppression, and adversity (see also Chapter 1). The process of feeling authentically heard is particularly important when conducting research with survivors of childhood adversity and abuse (Levell, 2019, 2022). Scholars have pointed to the importance of creative research methodologies with domestic abuse survivors as a way to counter the silence caused by the abuse (Houghton, 2015). Sensitivity in research is centred upon negating harm, which comes along with an explicit understanding of the power

178  Handbook of sensitive research in the social sciences differences between ourselves as researchers and those whom we are researching with. To make sense of this in relation to music elicitation as a research methodology, I have developed an underpinning of feminist praxis, which I see as central to a non-exploitative and extractive research process. The feminist research and collaboration principles, which are intertwined with music elicitation as a methodology, are as follows (Levell, 2024). • •

•

•

•

•

Ethical: Participants should have full information about the study and the use of the data, as well as access to the transcripts if requested. This includes the right to withdraw. ‘Do no harm’. Adopting flat hierarchies: The act of providing unstructured interview spaces goes some way to remove the power-over which can be engendered by the researcher-as-questioner, and the participant-as-answerer. Power and research with, not on, or over. They are positioned as equally leading and participating in the process as far as possible given the circumstances. Anti-objectivity: The participant controls the narrative. Questions of truth and authenticity are set aside, as hangovers from false claims of objectivity as a colonial and patriarchal assumption of knowledge production. Instead, the narratives or stories that are told are the focus. This also links to the critique of rap lyrics and videos being analysed as flat sources, alienated from the artists and audience which can lead to the further stigmatisation and criminalisation of marginalised groups. Co-curated research: The interview space should be non-invasive, and the decision about how much or little to share lies in the hands of the participant. This is part of not triggering or retraumatising participants. In the case of music elicitation this happens as the participant choses what music to play and when. Resource equitable: Providing payment or compensation to participants when engaging in funded research with paid researchers is about equitable allocation of resources. Expecting experts-by-experience to ‘donate’ their time for free can be exploitative. Care needs to be taken to ensure participants do not then feel coerced into giving a particular view. Justice seeking: Data collection should be intertwined with a social justice mission, to enhance opportunities for individual voices to be heard, as well as to amplify their voices to a wider audience and promote intersectional equality.

Feminist praxis has long been concerned with the process of reflexivity that accompanies the process of knowledge production (Stanley, 2013). By making visible the inner workings of the research process, feminist researchers seek to avoid the construction of ‘alienated knowledge’ (Stanley, 2013, p.4). This reference to Marxist theory alludes to the role of capitalism in the academic industry, ‘particularly in view of its combination of capitalist and patriarchal definitions and usages of “knowledge” and “science” in what is an effective denial of the labour processes involved in these’ (Stanley, 2013, p.4). The mirage of objectivity is a perennial issue in scholarly work in general; however, it is arguably even more pertinent to focus on in the case of international development work. Objectivity has been problematised and challenged within social research both from the perspectives of gender and race equality. Second-wave feminists criticised academic criminology for being too ‘malestream’; centering male voices and perspectives (Stanley, 2013). Kimberlé Crenshaw’s theory of intersectionality was published

Music elicitation and the art of listening  179 in the early 1990s (Crenshaw, 1991). Crenshaw noted a blind spot, particularly in the context of violence against women service provision, in that services for ‘women’ were actually built for a particular kind of White middle-class woman, which ended up negating the needs of Black and minoritised women. In this work, she made visible the ‘unconscious bias’ that both constructs and reinforces White supremacy. It was also a challenge within feminism itself, as Black feminists were challenging the hegemony of ‘White Feminism’ and the blind spots that this created in the movement.

OUTLINING MUSIC ELICITATION As discussed earlier, music elicitation broadly means using music as a tool to elicit participant narratives. As such, music is an elastic tool that has been used by scholars in memory work research groups (Allett, 2010), in interactive singing groups for people with dementia (Hara, 2011), combined with songwriting, imagery, and music creation in group therapy (dos Santos & Wagner, 2018). The use of music as an elicitation tool has also become an established practice in therapeutic contexts (Altun & Özdemir, 2018; Austin, 2002; McCaffrey & Edwards, 2016; O’Callaghan et al., 2012; Ramesh, 2020). My research has focused on using music elicitation in 1–1 interviews (Levell, 2019, 2022) as a pedagogic tool (Levell, 2024) and emerging as a youth work intervention tool (Levell, 2024). In my research using music elicitation both in the UK and Albania with men who have experienced childhood adversity and teenage criminalisation, I found four key ways in which music was used in the interview space (Levell, 2019, 2022, 2024). Specifically, these were: 1 . 2. 3. 4.

Music as an anchor to memories. Music as a communication tool. Music as a narrative tool. Music elicitation creating a bridge of understanding.

As described below, these elements were shown to resonate similarly when the method was used in the Albanian context. Several examples showed the way in which a music elicitation interview displaced traditional power imbalances. Various scholars have looked to ascertain the way in which music and memory intertwine, which provides the basis for its effectiveness as a tool to explore the past. In a ‘musical ethnography’, Kaufman Shelemay (2006) carried out interviews in Mexico City, interviewing members of the Syrian Jewish community there. They noted that ‘musical experience is sustained in memory as both a sound world and an affect-laden recollection of the past’ (Kaufman Shelemay, 2006, p.20). In adolescence, popular music from one’s sociocultural context can become the soundtrack to their youth generation. Van Campen (2014) noted that the peak period for the absorption of popular music as typifying the memories of their generation was from around 14 years old into their late twenties. They noted that ‘today, pop songs are the vehicles which evoke most childhood memories in adults’ (van Campen, 2014, p.584). Music can function as an anchor to the past by taking the participant back to times of physical or emotional significance as rooted in the memory of the song. In researching childhood domestic abuse (Levell, 2019, 2022), it was found that many participants decided to share songs that had functioned as offering solace in childhood, both as a form of comfort and escape. Music

180  Handbook of sensitive research in the social sciences has been found to have a ‘healing effect on mental health … [and] is also one of the preferred methods for coping with trauma’ (Altun & Özdemir, 2018, p.290). Music provided an anchor for the past, where participants remembered listening to songs. The use of music tracks can be employed in various ways to articulate different aspects of individual experience. When engaging in music elicitation interviews using YouTube as a source, participants are able to utilise either the lyrics in the track, the music video imagery, or the music as an anchor to their own memories. Using the lyrics or films enables the participants to show, rather than tell, their stories—drawing on the meanings and messages that the musicians conveyed in their songs. The risk, of course, is that, as researchers, we may overly interpret the lyrics or messages. As an elicitation tool, the purpose is the meaning that the participant conveys themselves. An interesting finding that arose in some of the interviews was the choice not to use music, or in other cases, not to draw on three tracks but instead just use one or two. As music is an elicitation tool rather than the primary focus of the interviews, this was not a methodological issue per se. However, it was interesting to see how the choice not to use music also elicited a response in the interviews. This was conveyed to us (myself and the research assistant) in one of the interviews at the outset. At this point, it was clear that the traditional music elicitation format would not be how the space would be run. However, we dealt with it by still respecting the principles of the music elicitation interview: unstructured, based on listening with as few interjections or questions as possible. What this shows is that the principles of placing the power in the hands of the participants do not necessarily need music in itself, but rather, they require the interviewer to release the reins on the space, putting the participant in the lead with what they want to share, when, and how. The lack of predetermined questions, as well as the tolerance of awkward silences, opened up the space without the researcher needing to fill it. This is a good example of the ways in which the participant starts to talk about the lack of music, which then leads them into a narrative description of their personality and what they enjoy doing. This functions as trust-building but also starts to give insight into how they see themselves, their relationships, and their hobbies. In research by Marsh and colleagues (2020), they also found that some interviews did not include music at all; however, they also found these opened up a narrative about the role of music in their lives. Thus, it brings us to consider whether the lack of music still has a functional role in an unstructured music elicitation interview. It is important to remember that music’s role is to promote open and lengthy narratives. Music elicitation promotes a different balance of power from that usually seen in a traditional interview. Using the participant’s choice of music and offering them the opportunity to curate the space flips the traditional power imbalances in a traditional interview. Open-ended narrative interviews give participants power and agency in the interview space (Gausman et al., 2019; Mmari et al., 2017). Listening to the tracks selected creates a shared experience. It is also important to be sensitive to the way the participants’ prior contact with the police might predispose them to consider interviews as intrusive and oppressive. Glynn (2014), for example, reports encountering this in his research with urban racially minoritised Black men in the UK. The use of unstructured interviews that are pinned on the selection of music by the participant creates safe spaces for listening. By stepping back from the shackles of the predetermined question format, we are placing greater trust in our research respondents. Trusting that they have answered the call for research as they have a story to tell on the topic we are researching. Trusting that they have decided in advance, through their music selection, the disclosures they wish to make and those they will keep hidden. The lack of direct interview questions avoids

Music elicitation and the art of listening  181 the potential spooking effect of a traumatic question. This is appropriate when researching sensitive topics. For instance, in my prior research about experiences of childhood domestic violence and abuse, I would not wish to put someone on the spot and ask directly about such traumatic events. However, I found that through the music elicitation interview, participants ended up sharing much more sensitive stories than I would have expected, particularly violent incidents, co-existing child abuse and childhood sexual abuse. I argue, therefore, that giving the participants the expectations of the interview in advance, asking them to select music tracks in advance (and thus consider what they want to share), and prioritising the silence of the researcher in the interview to give space for the participant to lead and curate the space, all serve to create an atmosphere of trust. As researchers, we can then willingly surrender control and dominance of the interview space, positioning the researched as the curator. The second aspect which came to be important is the recognition that, due to the unstructured interviews, as well as the unfamiliar and, at times, intense situation of co-listening to music with a stranger, there would be silence, which at times would feel awkward. I urged them to sit with this discomfort, as this can be the space where the long narratives begin. One research assistant, in particular, talked to me several times about how they had sat with the awkwardness and found it to work; longer uninterrupted narratives brought more rich information than they could have ever garnered by direct questioning. Overall, what was found in training others to carry out the method is that the challenge in using music elicitation is actually the simplicity: to be quiet as a researcher, to listen, to prioritise active listening and being in the moment rather than the extraction of particular data. The participants themselves could appear to feel the authenticity as well, with some noting at the end that it had been ‘freeing’ to be heard, that it felt therapeutic and unlike anything else that they had ever experienced. Ultimately, music elicitation is able to support the creation of bridges of understanding between people of very different backgrounds and positions.

CONCLUSION AND FUTURE DIRECTIONS Music is a medium of communication that promotes affect, memory, and empathy. Partly, this is due to its universal appeal. Although people have different cultural contexts, generational tastes, and genre preferences, the act of listening to music collectively is somewhat familiar to most. Co-listening as a practice is somewhat democratic in the way it promotes a sense of equality between researcher and participant who both listen together. When participants select the tracks and curate the interview narrative and space, traditional power imbalances are disrupted. The appeal of music elicitation from a pragmatic perspective is that it requires few resources, which are now more readily available in these modern times, primarily a means to play music tracks. Internet-enabled smartphones and free music streaming sites have widened access to all forms of music in a new way. There is great scope, however, for music elicitation to be tried and tested in new environments and new ways. Compared to its sister methodology, photo elicitation, it has been relatively under-explored and utilised (see Chapter 10). Future directions for the approach lie in the interdisciplinary application of the method and a wider network established to support the potential exciting innovations to come.

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REFERENCES Allet, N. F. (2010). ‘Love’s Labours’: Extreme metal music and its feeling community. PhD thesis, University of Warwick. Allett, N. (2010). Sounding out: Using music elicitation in qualitative research. Working Paper #14. University of Manchester, accessed 24 September 2024 at http://eprints​.ncrm​.ac​.uk​/2871​/1​/0410​ _music​_elicitation​.pdf. Allett, N. (2011). ‘As soon as that track starts, I feel …’ Unravelling attachments to extreme metal music with ‘music elicitation’. In S. Heath & C. Walker (eds), Innovations in youth research (pp.21–36). Palgrave Macmillan. Altun, Z. D. & Özdemir, M. (2018). The role of music in coping with trauma experiences. European Journal of Education Studies, 4(11), 289–303. https://doi​.org​/10​.5281​/zenodo​.1328275. Austin, D. (2002). The wounded healer: The voice of trauma: A wounded healer’s perspective. In J. P. Sutton (ed.), Music, music therapy and trauma (pp.231–259). London: Jessica Kingsley Publishers. Back, L. (2013). The art of listening (Reprinted). Bloomsbury Academic. BBC (2020). The History of Desert Island Discs. Radio 4 website, accessed 24 September 2024 at https://www​.bbc​.co​.uk ​/programmes​/articles​/59Y​r nYM​0Tw8​J7WJ​0MGKVfh7​/the​-history​-of​-desert​ -island​-discs. Crenshaw, K. W. (1991). Mapping the margins: intersectionality, identity politics, and violence against women of colour. Stanford Law Review, 43(6), 1241–1299. Darley, D., Blundell, P., Cherry, L., Wong, J. O., Wilson, A. M., Vaughan, S., Taylor, B., Scott, K., Ridgeway, T., Parker, S., Olson, S., Oakley, L., Newman, A., Murray, E., Hughes, D. G., Hasan, N., Harrison, J., Hall, M., Edah, R., … Practice, R. (2024). Breaking the Boundaries Collective – A manifesto for relationship-based practice. Ethics and Social Welfare, 18(1), 94–106. https://doi​.org​ /10​.1080​/17496535​.2024​.2317618. Davies, B. (2014). Listening to children: Being and becoming. London: Routledge. de Noronha, L. (2020). Deportation Discs (podcast series), accessed 24 September 2024 at https:// soundcloud​.com​/deportationdiscs. dos Santos, A. & Wagner, C. (2018). Musical elicitation methods: Insights from a study with becomingadolescents referred to group music therapy for aggression. International Journal of Qualitative Methods, 17(1), 1–9. https://doi​.org​/10​.1177​/1609406918797427. Gausman, J., Othman, A., Otoom, M., Shaheen, A., & Langer, A. (2019). Youth as navigators: A study protocol to incorporate narrative and visual methods into research on adolescent sexual and gender development among Syrian and Jordanian youth. International Journal of Qualitative Methods, 18. https://doi​.org​/10​.1177​/1609406918822220. Glynn, M. (2014). Black men, invisibility and crime: Towards a critical race theory of desistance. London: Routledge. Hara, M. (2011). Music in dementia care: Increased understanding through mixed research methods. Music and Arts in Action, 3, 34–58. Haug, F. (1999). Memory-work as a method of social science research: A detailed rendering of memorywork method, accessed 24 September 2024 at www​.friggahaug​.inkrit​.de​/documents​/memorywork​ -researchguidei7​.pdf. Herrity, K. (2024). Sound, order and survival in prison: The rhythms and routines of HMP Midtown. Bristol: Bristol University Press. Houghton, C. (2015). Young people’s perspectives on participatory ethics: Agency, power and impact in domestic abuse research and policy-making. Child Abuse Review, 24(4), 235–248. https://doi​.org​ /10​.1002​/car​.240​7. Howell, G. (2023). Exploring the order and disjuncture of music projects in places affected by war. In O. Odena (ed.), Music and social inclusion: International research and practice in complex settings (pp.7–21). London: Routledge. Kaufman Shelemay, K. (2006). Music, memory and history. Ethnomusicology Forum, 15(1), 17–37. https://doi​.org​/10​.1080​/17411910600634221. Levell, J. (2019). “Those songs were the ones that made me, nobody asked me this question before”: Music Elicitation with ex-gang involved men about their experiences of childhood domestic

Music elicitation and the art of listening  183 violence and abuse. International Journal of Qualitative Methods, 18, 1–10. https://doi​.org​/10​.1177​ /1609406919852010. Levell, J. (2022). Boys, childhood domestic abuse, and gang involvement: Violence at home, violence on-road. Bristol: Policy Press. Levell, J. (2024). Music, mattering, and criminalized young men: Exploring music elicitation as a feminist arts-based research and intervention tool. Leeds: Emerald Publishing Ltd. Mallon, S., Borgstrom, E., & Murphy, S. (2021). Unpacking sensitive research : a stimulating exploration of an established concept. International Journal of Social Research Methodology, 24(5), 517–522. https://doi​.org​/10​.1080​/13645579​.2020​.1857965. Marsh, H., Armijos Burneo, T. & Few, R. (2020). “Telling it in our own way”: Doing music-enhanced interviews with people displaced by violence in Colombia. New Area Studies, 1(1), 132–164. McCaffrey, T. & Edwards, J. (2016). “Music therapy helped me get back doing”: Perspectives of music therapy participants in mental health services. Journal of Music Therapy, 53(2), 121–148. https://doi​ .org​/10​.1093​/jmt​/thw002. Mmari, K. et al. (2017). ‘Exploration of Gender Norms and Socialization Among Early Adolescents: The Use of Qualitative Methods for the Global Early Adolescent Study’, Journal of Adolescent Health, 61(4), S12–S18. doi: 10.1016/j.jadohealth.2017.07.006. O’Callaghan, C., Barry, P., & Thompson, K. (2012). Music’s relevance for adolescents and young adults with cancer: A constructivist research approach. Supportive Care in Cancer, 20(4), 687–697. https:// doi​.org​/10​.1007​/s00520​- 011​-1104​-1. Presser, L. & Sandberg, S. (eds) (2015). Narrative criminology: Understanding stories of crime. New York: New York University Press. Ramesh, B. (2020). Influence of music as a coping strategy during COVID-19. SBV Journal of Basic Clinical and Applied Health Science, 3(3), 128–130. https://doi​.org​/10​.5005​/jp​-journals​-10082​ -02266. Ratnam, C. (2019). Listening to difficult stories: Listening as a research methodology. Emotion, Space and Society, 31(March), 18–25. https://doi​.org​/10​.1016​/j​.emospa​.2019​.03​.003. Rogers, J. (2022). The sound of being human: How music shapes our lives. White Rabbit. Stanley, L. (2013). Feminist praxis: Research, theory and epistemology in feminist sociology. In L. Stanley (ed.), Simone de Beauvoir. London: Routledge. https://doi​.org​/10​.4324​/9780203634431​-13. Stanley, L. (2017). Preface: Telling lives in feminist narrative enquiry. In J. Woodiwiss, K. Smith, & K. Lockwood (eds), Feminist narrative research: Opportunities and challenges (pp​.v​ii–xvii). Palgrave Macmillan. van Campen, C. (2014). ‘Listening to “my generation”’, in The Proust Effect: The Senses as Doorways to Lost Memories. Oxford: Oxford Scholarship Online, pp. 583–605. doi: 10.1093/acprof. Wood, S. & Chung, K. C. (2023). The art of listening. Plastic and Reconstructive Surgery, 151(5), 921–926. https://doi​.org​/10​.1097​/ PRS​.0000000000010065.

13. The use of instant messaging in sensitive research Jordan Dawson and Yibo Fan

INTRODUCTION Sensitive subject research ‘comprises studies that examine potentially delicate issues, since they focus on experiences that are painful or emotional for participants’ (Cornejo, Rubilar & Zapata-Sepúlveda, 2019; see also Chapter 1 in this volume). Given that the subject matter of this type of research may be difficult for participants to recount, there are a number of methodological challenges that a potential researcher must consider. These challenges relate, amongst other things, to the initial access to participants, ensuring participant wellbeing during the research process, and providing the research environment necessary to enable participants to speak openly about their experiences (see Dickson-Swift, James, Kippen & Liamputtong, 2007 and Liamputtong, 2007 for further discussions related to challenges). These challenges inform the ways in which potential researchers design the methodologies of their studies in various ways, including the design and implementation of the chosen data collection methods, and the means through which to engage with participants. With the mass public adoption of chat-based services such as WhatsApp, and the recent corporate adoption of ‘live chat’ functionality (Rajaobelina, Brun, Kilani & Ricard, 2022), it is likely that contemporary social research will increasingly turn to this means of communicating with participants. Instant Messaging (IM) is the use of internet software to send primarily text-based messages between users and has a variety of uses for social science researchers (Kaufmann & Peil, 2020). Whilst the use of computer-based IM services has lately made way for more asynchronous forms of communication conducted through mobile messaging applications, the nature of this communication has remained relatively constant. As a platform, IM and application-based chat typically see users engage in concise conversation, in ongoing back-and-forth communication. As well as the ability to send text, users have a variety of means of expressing themselves within a given chat application, including photo and video messages, voice notes, GIFs, and emojis, which present various tools of communication and may be drawn on throughout an ongoing conversation. This chapter will, therefore, reflect on the use of IM for collecting data in sensitive subject research, and also for navigating some of the challenges highlighted above. It will do this by discussing the experiences of both authors, who utilised this medium within research interactions for their respective PhD studies. The chapter considers the impact of utilising IM in the initial stages of research in terms of facilitating participation, within the interaction itself and on the output of said interactions. The chapter concludes by suggesting that while this means of communicating with research participants may not be a universal solution to the challenges related to research engagement on sensitive subjects, it is a tool with various uses for researchers. These uses include its ability to facilitate the participation of individuals who may otherwise be reluctant to disclose their experiences to a researcher, its various functions which 184

The use of instant messaging in sensitive research  185 both mimic and expand on what is available during more ‘traditional’ forms of communication, and its potential for producing considered and deliberate narratives related to some of the least understood social issues.

SENSITIVE RESEARCH PROJECTS: RESEARCHING WITH THE ‘HIDDEN’, ‘HARD-TO-REACH’ As well as seeking to explore potentially sensitive subjects, the studies being considered within this chapter were also concerned with the experiences of groups who may be considered ‘hidden’ or ‘hard-to-reach’. The terms ‘hidden’ and ‘hard-to-reach’ are often used to describe groups of people sought for research engagement who may face particular barriers to becoming involved with research processes (Ellard-Gray, Jeffrey, Choubak & Crann, 2015; see Chapter 1). The reasons for this are often complex, with groups that are considered to be ‘hidden’ and ‘hard-to-reach’ often possessing stigmatised characteristics and life experiences, cultural and language barriers, and complex relationships with systems of social control such as policing (Jones & Newburn, 2001). Whilst a colloquial labelling of particular groups as ‘hidden’ or ‘hard-to-reach’ is undesirable, given the heterogeneity within populations who share characteristics, experiences, and circumstances, and the potentially stigmatising nature of the label, some groups may indeed be considered harder to reach or more hidden than others. For example, Flanagan and Hancock (2010) suggest that among those identified as hardto-reach groups are ‘sex workers, drug users, people living with HIV and people from lesbian, gay, bisexual, transgender, and intersex communities’, as well as later identifying other groups who may be hard to reach based on migration status, ethnicity, disability, and age. Although caution should indeed be applied to labelling all of the above groups as inherently ‘hidden’ and ‘hard-to-reach’, understanding the potential difficulties in accessing populations such as these is integral to the development of appropriate methodologies for research that is focused on their experiences (Dawson, Einion-Waller, and Jones, 2020). Dawson’s (2021) research focused on male sex workers’ experiences of violence and otherwise harmful behaviour, and their subsequent engagement with, and reporting to, systems and bodies of social control, such as the police. Sex workers are identified as ‘hard to reach’ by Flanagan and Hancock (2010), and indeed in England and Wales, this understanding may be underpinned by the partial criminalisation of sex work through legislation related to soliciting, loitering and brothel keeping (Matolsci, 2022). Sex work is also a highly stigmatised occupation, which is reproduced within the legislation related to it, and which may in itself render some sex workers reluctant to discuss their experiences with researchers (Shaver, 2005). For male sex workers, this stigma is compounded by the idea that their participation in this form of work is somehow in contrast to their gender identity, with sex work typically presented as work undertaken by women (Dawson, 2021; see Chapter 5 in this volume). This is also coupled with the assumption that male sex workers engage in sex with other men and the homophobia attached to that (Minichiello, Scott & Callander, 2013), as well as the perceived threat of HIV, which has fuelled the stigmatisation of gay men since the 1980s (Fitzgerald-Husek, Van Wert, Ewing, Grosso, Holland, Katterl, Rosman, Agarwal & Baral, 2017). Fan’s research (ongoing) focuses on Chinese men’s experiences of child sexual abuse, their subsequent reporting of said abuse, and its impact(s) on them. Although not specifically designated as a ‘hard-to-reach’ group by Flanagan and Hancock (2010), numerous researchers have

186  Handbook of sensitive research in the social sciences identified survivors of sexual abuse as a ‘hidden’ and/or ‘hard-to-reach’ population (Arata 1998; Bolen & Scannapieco 1999; Smith, Letourneau, Saunders, Kilpatrick, Resnick & Best, 2000). Similar to Dawson’s research, Fan’s focus on male survivors of child sexual abuse may pose particular challenges given their reduced disclosure rates in comparison to female survivors (Easton, 2013; Mohler-Kuo, Landolt, Maier, Meidert, Schönbucher & Schnyder, 2014) and the socio-legal environment faced by male Chinese victims of sexual abuse, with female victims generally receiving more protection against crimes of a sexual nature (Zhang, 2012; Li, Zhou, Cao & Tang, 2022), which perhaps signals the gendered social expectations of who might face sexual victimisation. In navigating sensitive discussions of victimisation, as well as cultural ideas of gender expectations and intersections of law, policy, and practice, providing a favourable research space for participants to present their lived realities was of paramount importance to the conception of both studies. Given the barriers to engaging in research potentially faced by these groups, both Dawson and Fan employed flexible research methodologies which encouraged participants to engage in the ways in which they felt most comfortable. The primary data collection method utilised for both studies was semi-structured interviewing, and participants were offered a variety of means through which they could engage in this process. Dawson, for example, had offered participants the opportunity to discuss their experiences in person, over video call, through telephone call, or by using IM. For Fan, and as the discussion within the next section will elucidate, in-person communications were often not possible, but video and telephone calls were options for participants, alongside IM. For several participants across both studies, IM was the preferred method of engagement.

INFLUENCE OF IM ON RESEARCH STUDIES The following sections of this chapter consider the influence of IM on the studies at three different stages: before the research interaction, during the research interaction, and on the outcome(s) of the research interaction. Before the Research Interaction As alluded to in the previous section, one of the greatest challenges in sensitive subject research is gaining access to those with relevant experiences of the subject being explored. Whilst many of the ways in which potential researchers may navigate this particular challenge relate to sampling and engagement, the use of IM may in itself influence an individual’s decision to share their experiences and perspectives on the issue under consideration. This section discusses the influence that IM may have on the research process before the actual research interaction itself takes place, exploring how the technology facilitates a degree of space between researcher and participant, which is favoured by some, and how this space, along with the tools available within the software, can help build trust and rapport with participants. Widening access and engagement Within some research concerned with sensitive subjects, it is likely that those who have the relevant lived experience of the issue under consideration make up a small proportion of the overall population within the jurisdiction being studied. For example, the population of the UK is estimated to stand around 67 million, with estimates of sex work involvement

The use of instant messaging in sensitive research  187 suggesting that there are around 72,800 sex workers in the UK, with the majority of this figure believed to be women (Brooks-Gordon, Mai, Perry & Sanders, 2015). The population of male sex workers in England and Wales is likely to be less than half of the above figure, though accurate estimates of male involvement are not available. Additionally, the nature of sensitive subject research may also mean that even those with experiences relevant to the respective research projects are not open about them, meaning that the potential pool of participants is reduced again. Fan’s research on male experiences of child sexual abuse is a good example here, with male victimisation believed to be less prevalent than female victimisation (Pereda, Guilera, Forns & Gómez-Benito, 2009; Stoltenborgh, Bakermans‐Kranenburg, Alink & van IJzendoorn, 2015), and male survivors also less likely to disclose their abuse (Easton, 2013; Mohler-Kuo et al., 2014), as discussed previously. It was important to both studies, therefore, that the ways in which the respective research projects were designed enabled as many potential participants with relevant life experiences to engage with the research as possible. This is where the issues of distance and space become significant considerations, both in the sense of overcoming the physical distance between researcher and participant in some cases, as well as maintaining the emotional space between the parties in others. For Fan, the main challenge was the potential distance between parties. Acknowledging the potential difficulty in achieving a sample, and in order to engage with as many male survivors of child sexual abuse in China as possible, Fan did not impose any geographic constraints on who could participate in the study. This meant that participants could be based anywhere in China’s expansive 9.6 million square kilometre territory or may even have left China since their experiences. Indeed, among the sample of 25 men involved in the research, five were from eastern China, four from the north, four from the west, five from the south, and seven from central regions. The distances between these regions can exceed 1500 to 2000 kilometres, meaning that travelling to facilitate in-person interviews would not have been possible in all cases, given the significant pressure on time and resources this would have had on one or both parties. In order to address this potential challenge, Fan offered various mediums of remotely facilitated participation, namely through video and telephone calls, as well as through IM. This meant that Fan could connect with potential participants across the whole of China and complete the interview despite the physical distance between parties. Fan’s experience above is not something especially unique to IM as a means of facilitating research, of course, with telephone and video call interviews serving a very similar purpose (Irani, 2019). However, using IM did not just facilitate participation by overcoming the physical distance between researcher and participant, but it also did so while maintaining a degree of space between them. For Dawson and the context of researching in the much smaller footprint of England and Wales, participant concerns were centred on the separation between parties, which can be offered by engaging in IM conversation. Traditional methods of interviewing, such as those taking place in-person, of course, involve both parties being physically in the same space. Similarly, those that take place via video or telephone calls connect the parties who are physically remote from each other, though still include the appearance of both parties within the space of the other, albeit digitally or through audio (see Krouwel, Jolly & Greenfield, 2019). In arranging one particular interview, the potential participant had been communicating with Dawson by using an anonymised Twitter (since rebranded to X) account, which was designed to represent their sex work persona and contained no information which revealed their identity outside of this working alias. Creating an alias is common

188  Handbook of sensitive research in the social sciences amongst sex workers, with many hiding what they do from friends, family, and others, which may be considered a consequence of social stigma and the partial criminalisation of sex work in England and Wales (Sanders, 2004). It was understandable, therefore, that this participant held concerns related to meeting in-person or in another format which would reveal identifying information, such as their likeness, phone number, or email address. Administering the interview through the already open IM communication stream meant that space could be maintained between participant and researcher, which helped to preserve the separation of the participant’s working self and their self known to those outside of their sex work involvement. Accessing the research interaction via IM meant that this participant was able to comfortably engage in the project with the perceived potential risk to their anonymity minimised. This potentially facilitated their engagement, which may otherwise not have been forthcoming, even with the guarantees of anonymity offered within the informed consent process. Anonymity was also a concern navigated using IM in Fan’s study, with the content of the interviews relating to sexual abuse, and concerns related to identity exposure being contextualised by potential experiences of discrimination and stigmatisation (Easton, 2013) similar to those faced by male sex workers. Like the participant in Dawson’s research above, some of Fan’s participants held concerns about meeting in person or via video call, as this would identify them to the researcher and raise the risk of exposure. One participant, for example, asked whether their appearance could be pixelated and voice altered during a video call before indicating that they preferred to participate via text-based discussion using IM when the option was explored with them. As well as concerns around anonymity, participants in Fan’s study also indicated that participating via IM would help them speak more freely about their experiences. For example, one participant suggested that they ‘feel quite shy and embarrassed hearing myself verbalise (experiences of victimisation)’, and another indicated a preference for IM-based communication by saying ‘it’s very difficult for me to speak it out’. Previous research has highlighted the promise of text-based communication in allowing participants to speak more freely, with Schober and colleagues (2015) in particular suggesting that typed communication may lead to increased disclosure of sensitive information during interviews. Given the content of both research projects, the use of IM as an option for participants, and the space that this creates between the researcher and participant, may have meant favourable conditions for participation, which yielded both involvement in the research in the first instance, and more open dialogue within the interactions once participation had been agreed. Whilst none of the above is unique to IM-based interviewing—indeed, email interviews can also both connect those distanced and maintain space between those connected—they remain factors which highlight some of the potential of IM’s use in sensitive subject research. Both projects were able to utilise IM to navigate challenges, whether these were logistical or related to barriers to engagement, perhaps enabling wider participation and the involvement of those who may otherwise have decided not to take part. Building trust and rapport The initial stages of a research interaction often include a process of building trust in the research process and the researcher themselves, as well as the development of rapport between the participant and the researcher. When the topic of the research is of a sensitive nature, this phase becomes particularly significant, with participants often being asked to discuss content of a potentially upsetting nature and share experiences which they may not wish to be revealed

The use of instant messaging in sensitive research  189 to those outside the research environment. Kawulich (2011, p.61) describes establishing rapport as involving ‘putting people at ease,’ and indeed the research topics of both Dawson’s and Fan’s studies required participants to feel at ease in discussing their experiences. The process of building trust and rapport often begins in advance of the actual research interaction itself, through the communications between researcher and participant that precede engagement in the chosen data collection activity. For some, this may come in the form of communications facilitated by various means, such as emails or telephone conversations, before meeting in person or otherwise engaging in the formal research interaction. This process of building trust and rapport may then continue in the time immediately preceding the formal research interaction, where the parties may engage in gentle conversation to continue developing a relationship. In this initial interaction, the researcher is able to reiterate the reasons for their interest in the participant’s specific experience(s) and perspective(s), as well as what may be expected during the research process, which may support the sense of transparency integral to trust and rapport (McGrath, Palmgren & Liljedahl, 2018). Where the researcher and participant remain separated by technology throughout this initial interaction and within the research interaction itself, questions may be raised as to how this process would play out. For both authors, this was a point of consideration when initially communicating with potential participants, and measures were put in place to optimise transparency in an effort to develop rapport and trust. For example, Dawson’s interaction took place through Twitter and an account that was set up specifically as a ‘professional’ account. The account included Dawson’s full name, a picture of them as the display photo, information on their student status within the bio, and a link to an academic profile published through the Wales Doctoral Training Centre. Notably, some IM platforms also enable users to send other forms of communication besides typed text. For example, Dawson utilised features that enabled them to share the research information and informed consent forms with the participant, to supplement initial discussions of the research and further explain what would be expected. For Fan, sending proof of identity, such as a photograph of their student identification card, was integral to building trust in the research and themselves as a researcher. According to Easton, Saltzman, and Willis (2014), many survivors of sexual abuse refrain from disclosing their experiences due to the absence of a trustworthy confidant, and Fan’s status as a PhD student within a recognised institution may have demonstrated their trustworthiness. Indeed, one participant remarked that receiving Fan’s identification was pivotal to their engagement in the research process, suggesting that they ‘tend to trust universities and researchers more, as you should be more responsible in protecting my privacy’. Rather than being limited within IM, building trust and rapport is arguably something very achievable with the correct steps taken by the researcher. Indeed, what must be recognised is that the disconnection between the participant and the researcher using IM, which may limit some of the rapport and trust-building process, is intentional and preferred by those choosing to engage in research in this way, to facilitate their favoured participation circumstances. Therefore, while researchers must consider how the trust and rapport-building process is impacted by engaging within an IM format, the ability to make initial introductions remains, and there are ways and means provided by the technology through which positive research relationships may be built.

190  Handbook of sensitive research in the social sciences During the Research Interaction Following the processes of finding, recruiting, and building trust and rapport with those who hold relevant experiences and perspectives for the research in question, the next point of consideration relates to the actual research interaction itself. This section of the chapter considers how using IM to perform semi-structured interviews impacted the research by discussing the issues of flexibility and non-verbal (or non-typed, in this case) communication. By discussing these elements, the section will demonstrate the potential of using IM in sensitive subject research and will raise key considerations that must be made by researchers seeking to adopt this method. Maintaining flexibility Early forms of IM technology involved the users engaged in conversation being ‘logged in’ to the specific software. This meant that, for the most part, both parties were active on the software at the same time while engaging in conversation. What must be noted at this point is that more contemporary forms of IM can be used both synchronously and asynchronously, with users typically accessing IM applications with internet-enabled mobile devices that notify them of new messages (Jhala & Menon, 2021). Users of these applications are not, therefore, necessarily ‘logged in’ to these services in the sense that they are actively using them, but they are in the sense that they are reachable via these services as they go about their daily lives. The style of conversation also remains broadly similar, with typically short messages sent back and forth between users, though the capacity for more detailed messages is there if and when required. The ability to communicate synchronously also remains, should both users be active at the same time. Given that communications between researcher and participant may take either of these forms, it is important that there is some discussion as to how the participant may expect the conversation to play out at the beginning of the research interaction. For example, in Dawson’s case, it was agreed that the conversation would be rather sporadic, with both parties replying when they had the chance over a period of a couple of days. For Fan, conversations with participants were more synchronous in nature, with participants often responding to the recruitment post wanting to begin the interview immediately and complete it in one sitting. Using IM for these interviews meant that either format was possible, and while both come with their own challenges and considerations, a key benefit was identified within both researchers’ experiences. This related to the space between the participant and the researcher, discussed in the first section as enabling participation for some, which meant that both parties had the benefit of time. With the other party not immediately present, time could be taken to think carefully about the prompt or response before continuing the conversation. This may in itself impact the quality of data gained from the process (Schiek & Ullrich, 2017) (discussed in more detail later in this chapter), but more importantly, it may also help facilitate an ethical approach to exploring sensitive subjects. With time and space to consider the direction of the conversation, participants may be more comfortable engaging and also disengaging if they wish to. Without the immediate presence of the researcher, the participant may be more comfortable taking a break from the conversation and coming back to respond at a later time, or even perhaps withdrawing from the conversation altogether should it become overwhelming. Sim and Waterfield (2019) discuss the latter point in the context of focus groups, suggesting withdrawal is a potentially ‘disruptive’

The use of instant messaging in sensitive research  191 act which some may find difficult to perform in the presence of others. Within an IM setting, this act becomes as simple as not replying to a message or perhaps sending a message which outlines withdrawal from the study, meaning that participants are perhaps more likely to withdraw if they no longer wish to continue. Similar to agreeing on the means of conversing, researchers using this method should also ensure that participants understand what will happen with their data should they choose to withdraw in this way, and also that they know what to expect from the researcher if they were to stop replying to messages (such as whether follow-up messages will be sent, for example). Communicating emotion Although participants may well be better enabled to take a break or disengage from a research interaction with the benefit of space, there may be some question as to how well researchers themselves are able to ensure that participants are comfortable continuing the discussions being held. This, of course, is a particular concern in research such as that being considered here, which inherently focuses on issues that are sensitive (Whitney & Evered, 2022). In order to assess whether a participant is comfortable continuing, a researcher may periodically check in directly with the participant. Much of what may prompt these check-ins, or a more significant concern for the emotional wellbeing of a participant, may not be directly verbalised, however. Indeed, much of how human beings express emotion is non-verbal and relates to facial expressions, body language, and tone of voice (Hall, Horgan & Murphy, 2019). When research interactions are performed in person, or to an extent through video or telephone calls, this, of course, may be recognised by the researcher, who may act decisively by suggesting a break or the termination of the interview. When the researcher and participant are distanced by technology, such as within IM-based research, these non-verbal cues cannot be communicated in the same way. This means that researchers adopting this means of communicating with participants must consider how well they can ensure that participants are comfortable within discussions, and also how they may interpret the meaning of particular discussions when so many of the meanings attached to interactions are tied to non-verbal cues. On the first point around participant comfort and wellbeing, it may well be true that researchers are less able to recognise signs of participant distress within an IM interaction compared to those performed in-person, or perhaps by video or telephone call. It should be pointed out, however, that non-verbal cues signalling participant discomfort may be missed even during research interactions of these types. Therefore, it is important that researchers implement a protocol for ensuring participant wellbeing regardless of the means through which the research is performed. A feature of any such protocol may involve maintaining regular check-ins with participants, the purpose of which should be communicated with participants prior to the research taking place, along with discussions as to how participants may withdraw and what would happen with any data collected up until that point. Maintaining these periodic check-ins with participants in the absence of non-verbal cues which may prompt concern may help researchers ensure participant wellbeing; though this is not fail-proof, of course, as it relies on participants being truthful about how the research is impacting them. The ability to not answer particular questions and take breaks when required may also form part of any protocol. In this regard, attention may be drawn to the point made in the previous section, relating to just how ‘instant’ conversation is expected to be when using contemporary IM forums. Indeed, there is a level of flexibility offered to both participant and researcher here, in a conversation naturally spaced by pauses which allow for typing time. A participant taking

192  Handbook of sensitive research in the social sciences a break within this context is not necessarily something which is always solicited by the researcher, but rather something which can be done on the participant’s initiative and which the researcher may not even know about. Here, utilising IM to communicate with participants may even be considered as something which navigates ethical challenges around participant wellbeing compared to in-person, video call, or telephone methods, with participants empowered to engage with the research on their terms. With regards to the point about interpreting meaning, there are again ways and means through which meaning beyond words may be expressed within IM interactions, which may be utilised by both participant and researcher (see Dawson, Einion-Waller & Jones, 2020 for further discussion). For example, within both projects, emoji or emoticons were used to help contextualise elements of the discussion. Emoji are available to many users of smart technology and can often be found within smartphone or tablet keypads when composing a message. While the icons available are numerous, including those representing shapes, flags, animals, and vehicles, the main emoji of interest here are those which represent facial expressions, gestures, and body language. The ways in which emoji were utilised across both projects varied and were very much dependent on the content of the discussion. For example, a participant within Dawson’s research had utilised the ‘man shrugging’ emoji ( ) when placing their work amongst the broader sex work industry, perhaps signalling uncertainty. In another extract, the use of both the ‘tears of joy’ ( ) and ‘man facepalming’ ( ) emoji when outlining the development of their selfie skills perhaps indicated both humour and disbelief. In Fan’s work, emoji were often employed during more serious areas of discussion, such as his own use of the ‘face exhaling’ ( ) emoji to express empathy, and participants’ use of the ‘loudly crying face’ ( ) emoji to convey the upsetting details of their experiences. Despite being separated by technology, both researchers were able to communicate and convey a layer of meaning traditionally reserved for face-to-face (including via video call) and, to some extent, telephone conversations. The use of emoji in these conversations was, of course, subject to interpretation, though non-verbal communication (and indeed verbal communication) in the traditional sense is also subject to interpretation. Being able to express emotion and sentiment within IM using emoji and other means, such as GIFs, is important for contextualising the conversation and providing meaning; however, it must be acknowledged that this method only conveys intended meaning. That is, the user selects the emoji they feel fits, or at times the one they see as fitting how they want to come across. This brings the discussion back to the beginning of this section, where the issue of recognising participant discomfort was raised. The emoji used in a conversation may not always represent true emotion, but rather a performance of emotion intended to provoke a specific response or to mask true feeling. While this can be true of non-verbal communication more broadly, it is more difficult to access underlying cues within the disconnected context of IM. Therefore, while emotion can be conveyed using IM when performing research, it must be recognised that expressed emotion and felt emotion within the interaction may differ considerably. Researchers interested in sensitive subjects should be mindful of this when exploring the use of IM and consider carefully how participant wellbeing can be monitored throughout the process and how demonstrations of emotion using tools such as emoji are interpreted within analysis.

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The use of instant messaging in sensitive research  193 After the Research Interaction Up until this point, this chapter has considered how IM may facilitate engagement in research on sensitive topics, and how these sensitive topics may be navigated within conversations using the technology. This section shifts the focus onto what comes after the research interaction utilising IM takes place, or indeed what comes out of the interaction. The section is split into two parts which consider issues of transcription and data quality, and makes a case for IM as a means that has strength in both areas, though it may not be instantly recognisable in the case of data quality. Transcription Where interviews are the data collection method of choice, transcription is typically the next step of the research undertaken. In the case of the research projects under consideration here, the use of IM meant that transcribing the data was a considerably different task compared to what an in-person and audio-recorded interview may have been. Conducting the interviews using IM meant that transcription was being done as the interviews took place, with a log of the conversation recorded by the respective software being used. While a simple point may be made here about the convenience of this compared to the in-person example given above, a researcher undertaking this method cannot take their role in transcription for granted when undertaking research using IM. The reality is that this process becomes less labour-intensive and perhaps quicker, but there is a risk that merely copying and pasting the conversation into a word processor would distance a researcher from the data. It has been suggested that data analysis begins at the point of transcription, with the researcher reviewing the discussions held within the research interaction and recognising emergent themes while undertaking this process (Point & Baruch, 2023). Where this data is already in typed form, such as within an IM interview, there may, therefore, be some question as to whether a researcher can remain engaged with the data at this point. Similar questions may, however, be asked about research which utilises professional transcription services, where although not involved directly in the transcription, the researcher retains responsibility for ensuring that the transcript accurately reflects the discussion. This is also true of researchers utilising IM, who must ensure that the data is accurately extrapolated from the software of choice. At this point, the researcher may spend some time (re)familiarising themselves with the data and acknowledging the potential themes emergent from the discussion. Indeed, this familiarisation process is something that may begin during the research interaction itself, with the transcript available to the researcher at the time of engaging in discussion with the participant. While this may be advantageous for thinking about what is to come from the interaction, it may equally be so for directing the discussion itself. Should the structure of the research interaction not be rigid, such as the semi-structured interviewing method adopted by both researchers, the transcript may provide useful opportunities for follow-up questions and for covering areas that may not yet have been covered, or had perhaps passed in the conversation before any follow-up question or prompt was thought of. The space afforded to participants, discussed earlier in this chapter, may facilitate the researcher themselves with the space to consider the conversation carefully and tease out discussions of sensitive topics by referring to areas of responses which may have been of interest.

194  Handbook of sensitive research in the social sciences Data quality and depth Another point of consideration here is the depth and quality of the subsequent data captured during the research process utilising IM. As referred to earlier in the chapter, the nature of IM conversations typically involves short messages that mimic many real-life, and perhaps informal, interactions. This may raise questions about just how in-depth responses to prompts may be if the conversation were to follow this tradition. Of course, not all research designs are geared towards an in-depth response from participants, but for those that are, IM perhaps should not be dismissed. In the experience of Dawson, there was a material difference in the transcript of IM interviews compared to those done in person or through telephone calls, in that the raw transcripts were longer when using the latter means (see Dawson, Einion-Waller & Jones, 2020). It may be questioned whether this equates to depth, however, or whether other factors are at play here. For example, when typing a message through IM, participants have the space to carefully consider their responses. This space may be used to take some time to think, as well as to review and edit a response before sending. This space is less afforded to those who are communicating through more traditional means, and this may impact the depth and quality of responses in other ways. For example, participants may begin answering a question before pausing and changing direction. This is something that Dawson also experienced during the data collection phase of his research, with participants beginning to answer almost immediately after a prompt was delivered, but seemingly thinking about their response while verbalising their initial thoughts and changing the direction of the discussion. This often meant that the seemingly deeper response was not necessarily so. It is not just the depth of participant responses that are of interest here, but also the content that participants felt comfortable sharing within the research environment. With both projects focused on sensitive subjects, interviewing using IM and the space afforded to participants for considering, expressing, reviewing, and editing their responses may have meant that they felt more able to open up about the issues raised. Should there be particular elements or details of an experience that participants may not be comfortable revealing, by utilising IM their answers could be more carefully considered because of the conditions facilitated by the space between researcher and participant, and participants are perhaps less likely to avoid a subject altogether through fear of saying more than intended. There is perhaps a concern of selfcensorship here (see Voida, Mynatt, Erickson & Kellogg, 2004), though any social interaction may contain an element of self-censorship where the individuals involved negotiate the impression of themselves that they are giving in order to match with their own internalised perception of self, or the self they wish to project. Being able to censor responses by reviewing and editing may mean more comfortable participants, in that case, who are able to take their time and choose their words carefully when confronting potentially upsetting discussions. Opdenakker (2006) provides discussion on this point, suggesting that asynchronous conversation and this ability to self-censor what is communicated may lead to more open accounts of the topic being discussed. This is particularly advantageous within discussions of a sensitive nature and may therefore be considered a strength of the method within research of this type. This section has been primarily concerned with what may come out of a research interaction facilitated by IM, and the responsibilities held by the researcher once this interaction is complete. The key messages here relate to the data that may be captured and how it compares to that generated by other means of facilitating a research interaction. It also covers the ways in which the processes of IM-facilitated research may mean that researchers must adapt their practices in order to maintain similar interactions with the data. While some of the discussions

The use of instant messaging in sensitive research  195 held here may present some obvious potential within IM-facilitated research, such as the impact on the process of transcription and the presence of a rolling transcript to facilitate follow-up questions, some of the subjects raised may be debated as either strengths or limitations. The more concise responses from participants may be read by some as lacking enough depth, and the self-censorship presented as facilitating a comfortable research environment may be interpreted as questioning the reliability of the data generated. Concise data must not be conflated with data that does not address key issues, however, and it must be acknowledged that self-censorship is not limited to research facilitated by an IM environment nor is it necessarily prescriptive of an unreliable narrative. Utilising IM within sensitive subject research may indeed mean that participants are able to self-censor more effectively and provide more concise responses to prompts which reveal only that which is intended. However, for some, this may be the threshold between discussing their experiences with a researcher and avoiding speaking of their experiences altogether, raising questions as to whether these are limitations or rather considerations which must be made by researchers when seeking to explore sensitive subjects in this way.

CONCLUSION AND FUTURE DIRECTIONS This chapter set out to consider the use of IM in sensitive subject research by reflecting on the experiences of both authors having used the technology to perform semi-structured interviews within their respective research studies. Focusing on male sex workers’ experiences of violence and otherwise harmful behaviours in England and Wales, and Chinese men’s experiences of child sexual abuse, both studies addressed potentially upsetting themes and socially taboo issues. Whilst the purpose of the chapter was not to make a case for IM’s use necessarily, there are several issues raised within the collective experiences of the authors which highlight its strengths within certain circumstances. The key issues here relate to the ways in which IM may facilitate participant engagement in the research process, how researchers and participants may express themselves using the technology, and how this expression may look in terms of the data generated by using this method. The authors’ experiences suggest that, as a platform, IM provides various tools that mimic other means of conversing and make various layers of communication possible, while also maintaining a sense of space between the two parties who are connected in other ways. In terms of its utility for research, therefore, IM may be able to facilitate engagement for those who face complex barriers to discussing their experiences, as well as providing the space through which considered narratives can be produced, and communication beyond the typed form conveyed. Instant messaging as a means through which to engage in research interactions is not without its limitations, nor is it likely to be appropriate for all studies and all potential participants. However, it is a tool that holds great potential. In research that seeks to expand social knowledge and understanding of issues that typically go unspoken, IM’s inclusion may, for some potential participants, be the difference between engagement and non-engagement, or between discussing a particular issue or avoiding it entirely. Researchers developing methodological frameworks for projects that seek to explore sensitive subject matter, and who are required to navigate these complex barriers to participation faced by some, should therefore consider whether the inclusion of IM in some form may be appropriate for their study.

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The use of instant messaging in sensitive research  197 Li, M. N., Zhou, X., Cao, W., & Tang, K. (2022). Sexual assault and harassment (SAH) victimization disparities between sexual minority and heterosexual Chinese youth. Journal of Social Issues, 79(4), 1325–1344. https://doi​.org​/10​.1111​/josi​.12511. Matolcsi, A. (2022). Police implementation of the partial sex purchase ban in England and Wales. European Journal on Criminal Policy and Research, 28(1), 135–153. McGrath, C., Palmgren, P. J., & Liljedahl, M. (2018). Twelve tips for conducting qualitative research interviews. Medical Teacher, 41(9), 1002–1006. https://doi​.org​/10​.1080​/0142159X​.2018​.1497149. Minichiello, V., Scott, J., & Callander, D. (2013). New pleasures and old dangers: Reinventing male sex work. The Journal of Sex Research, 50(3–4), 263–275. https://doi​.org​/10​.1080​/00224499​.2012​ .760189. Mohler-Kuo, M., Landolt, M. A., Maier, T., Meidert, U., Schönbucher, V., & Schnyder, U. (2014). Child sexual abuse revisited: A population-based cross-sectional study among Swiss adolescents. Journal of Adolescent Health, 54(3), 304–311. Opdenakker, R. R. (2006). Advantages and disadvantages of four interview techniques in qualitative research. Forum Qualitative Social Research, 7, 10. Pereda, N., Guilera, G., Forns, M., & Gómez-Benito, J. (2009). The prevalence of child sexual abuse in community and student samples: A meta-analysis. Clinical Psychology Review, 29(4), 328–338. https://doi​.org​/10​.1016​/j​.cpr​.2009​.02​.007. Point, S. & Baruch, Y. (2023). (Re)thinking transcription strategies: Current challenges and future research directions. Scandinavian Journal of Management, 39(2), 101272. https://doi​.org​/10​.1016​/j​ .scaman​.2023​.101272. Rajaobelina, L., Brun, I., Kilani, N., & Ricard, L. (2022). Examining emotions linked to live chat services: The role of e-service quality and impact on word of mouth. Journal of Financial Services Marketing, 27(3), 232–249. https://doi​.org​/10​.1057​/s41264​- 021​- 00119​-8. Sanders, T. (2004). Sex work: A risky business (1st ed.). Uffculme: Willan. Schiek, D. & Ullrich, C. G. (2017). Using asynchronous written online communications for qualitative inquiries: A research note. Qualitative Research, 17(5), 589–597. https://doi​.org​/10​.1177​ /1468794117690216. Schober, M. F., Conrad, F. G., Antoun, C., Ehlen, P., Fail, S., Hupp, A. L., Johnston, M., Vickers, L., Yan, H. Y., & Zhang, C. (2015). Precision and disclosure in text and voice interviews on smartphones. PLoS ONE, 10(6). https://doi​.org​/10​.1371​/journal​.pone​.0128337. Shaver, F. M. (2005). Sex work research: Methodological and ethical challenges. Journal of Interpersonal Violence, 20(3), 296–319. https://doi​.org​/10​.1177​/0886260504274340. Sim, J. & Waterfield, J. (2019). Focus group methodology: Some ethical challenges. Quality & Quantity, 53(6), 3003–3022. https://doi​.org​/10​.1007​/s11135​- 019​- 00914​-5. Smith, D. W., Letourneau, E. J., Saunders, B. E., Kilpatrick, D. G., Resnick, H. S., & Best, C. L. (2000). Delay in disclosure of childhood rape: Results from a national survey. Child Abuse & Neglect, 24(2), 273–287. https://doi​.org​/10​.1016​/S0145​-2134(99)00130-1. Stoltenborgh, M., Bakermans‐Kranenburg, M. J., Alink, L. R., & van IJzendoorn, M. H. (2015). The prevalence of child maltreatment across the globe: Review of a series of meta‐analyses. Child Abuse Review, 24(1), 37–50. https://doi​.org​/10​.1002​/car​.2353. Voida, A., Mynatt, E. D., Erickson, T., & Kellogg, W. A. (2004). Interviewing over instant messaging. CHI ’04 Extended Abstracts on Human Factors in Computing Systems, 1344–1347. https://doi​.org​ /10​.1145​/985921​.986060. Whitney, C. & Evered, J. A. (2022). The qualitative research distress protocol: A participant-centered tool for navigating distress during data collection. International Journal of Qualitative Methods, 21. https://doi​.org​/10​.1177​/16094069221110317. Zhang, W. (2012) Progress, challenges and suggestions on legislative efforts of combating sexual violence against children in the mainland China. Liverpool Law Review, 33(1), 37–43. https://doi​.org​ /10​.1007​/s10991​- 012​-9108​- 6.

14. Using visual research methods for research with chronically ill children Ana Patrícia Hilário, Fábio Rafael Augusto and Joana Mendonça

INTRODUCTION The use of visual methods (drawing, photography, videos) has become particularly prominent in the last two decades in research conducted with children (Mitchell, 2006). Visual methods have been found to be particularly suited for conducting research with these actors due to their flexible and interactive nature (O’Connell, 2013; see also Chapters 9 and 11 in this volume). When conducting research with children, it is important to acknowledge that there can be a power imbalance between them and the adult researcher (Moore et al., 2008) which can be mitigated by task-based methods (such as photo-elicitation or drawing-elicitation interviews) since these might enable children to feel more comfortable in the presence of the adult researcher (Punch, 2002). Furthermore, children might feel more relaxed when in contact with visual models of representation (O’Connell, 2013). The use of visual elicitation tools when conducting research with children might allow them to assume a position of power by exerting some control over data generation (Martin, 2019). Nevertheless, absolute ‘ethical symmetry’ (Christensen & Prout, 2002) might not be achieved due to the inherent vulnerability of children’s status. Engaging children in research and enhancing their voices is key to understanding their experiences and increasing their agency (Spencer et al., 2020). The idea of children’s agency is based on the belief that these actors can make sense of the world around them and therefore provide a valid and unique perspective on issues concerning their health and wellbeing (Tay-Lim & Lim, 2013). In the field of health and illness, drawings have been used as a powerful visual elicitation tool for understanding children’s experiences and perceptions (Bendelow et al., 1996; Pridmore & Bendelow, 1995). Drawing is a familiar activity for most children and can be considered a child-friendly method of data collection (Horstman et al., 2008; Liamputtong & Fernandez, 2015). Through drawing, children might be able to freely express their feelings and thoughts (Hill et al., 1996). Drawings might indeed offer a rich visual description of children’s worlds (Punch, 2002), highlighting the complexities of their lived experiences (Mitchell, 2006; Liamputtong & Fernandez, 2015; Abdulah et al., 2021). Researchers have proposed a shift from the ‘idea of a child as “becoming” an adult to the “being child”’ (Harden et al., 2000, p.104). Therefore, it is important that not only the experiences of children be taken seriously but that researchers offer them the chance to participate in research as children (Moore et al., 2008). Drawing is a suitable activity for children as it is aligned with their cognitive and communicative age skills (Mitchell, 2006). The use of the ‘draw, write and tell’ technique allows children of different ages to tell their stories in an informal environment using instruments that are familiar to them (that is, pencils, paper, and 198

Using visual research methods for research with chronically ill children  199 markers) (Horstman et al., 2008). In addition to drawing, ‘write and tell’ might enable children to contribute to data interpretation (Angell et al., 2015). Thereby, instead of passive collaborators, children might be active participants in the data collection process, assigning meaning to their productions (Martin, 2019). While it is key to enhance children’s participation in research (Spencer et al., 2020), their inherent vulnerability should also be taken into consideration by researchers. Indeed, children are a vulnerable population because they cannot make personal life choices or personal decisions (Moore & Miller, 1999; see also Chapters 1, 15 & 16 in this volume). This vulnerability is augmented when the children under study suffer from a health condition (Hilário & Augusto, 2019). Nevertheless, as pointed out by Benzon and Blerk (2017, p.897), ‘vulnerability is socially-constructed and dependent on how power relations are created between marginalized people’. Despite their inherent vulnerability, children are agents capable of interpreting their reality and providing important information about their experiences (Brady et al., 2015; Jenkins, 2015). It is essential to recognise children’s agency and give them a voice so that they can speak out on issues that concern them (Valentine, 2011). The inherent vulnerability of children might be mitigated with the use of drawings to elicit their voices (Eggleton et al., 2017). Attempting to understand children’s inner worlds starts with placing them as producers of research data and knowledge vis-à-vis the researchers. Through visual methods such as drawings, children can have the opportunity to be active participants in the research process (Honkanen et al., 2018). Furthermore, it enables researchers to listen to children’s experiences, albeit in a different way (Cook & Hess, 2007). We took as a starting point that children have different capabilities than adults (Punch, 2002). Inviting children to draw their experiences creates space for them to share their perceptions and understandings (Einarsdottir et al., 2009) while enhancing their skills. We have used ‘draw, write and tell’ (Angell et al., 2015) as an elicitation tool to understand how children make sense of chronic illness. In addition to the vulnerability of children, the sensitivity of the topic under investigation makes drawing an even more fruitful technique as it enables them to have a degree of control in the research process, namely in the production of data and knowledge (Honkanen et al., 2018). This technique has already used to assess children’s experiences of pain in emergency departments (see Pope et al., 2018a). In this study, children as young as four years old were able to describe in detail their pain experiences, including its visual, auditory and sensory dimensions. However, the applicability of the ‘draw, write and tell’ method to explore chronic pain in children is still understudied. Chronic illness might be considered a sensitive topic to be discussed by children in the sense that it might lead them to experience discomfort, concern, or embarrassment (Moore et al., 2021). Nevertheless, this might be mitigated by the context in which the research takes place and the relationship established between children and researchers (Powell et al., 2020). This chapter discusses the use of the “draw, write and tell’ technique as an elicitation tool to understand how children make sense of chronic illness (see also Chapters 9, 11 & 21). We will present two different studies: the first study focuses on the experiences of children with chronic pain; the second study highlights the experiences of siblings of children with a chronic and advanced illness. We intend to reflect on the potentialities and challenges associated with the use of this type of methodological strategy.

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‘DRAW, WRITE AND TELL’ METHOD: OUR STUDIES The data presented in this chapter derive from two qualitative studies using the ‘draw, write, and tell’ technique (Angell et al., 2015) with two convenience samples of participants. The first study intended to understand the experiences of chronic pain in childhood and its impact on family dynamics. Interviews were conducted with seven children aged between seven and 17 years (four girls and three boys) with chronic pain. All children were Black and suffered from sickle cell disorder. This illness is characterised by a high degree of uncertainty, and pain mainly occurs in a non-predictable way (Atkin & Ahmad, 2001). The children were recruited through a chronic pain consultation at a public hospital in Lisbon, Portugal. The second study aimed to explore children’s experiences when living with a brother or sister with a chronic and advanced illness. Five children aged between four and 10 years (two boys and three girls) who had a brother or sister with a chronic and advanced illness were interviewed. The children were recruited either through a palliative care unit or through snowball sampling. In both studies, parents and their children were informed about the research’s goals, the planned activities and follow-up feedback. Moreover, children were assured that their participation was voluntary and that they could withdraw from the study at any time if they wanted to, without having to give any reason. Following this disclosure, written consent was obtained from parents regarding the participation of their children, and oral consent was obtained from the youngsters. In the first study, children were asked to draw their chronic pain on blank A4 paper using crayons, write their thoughts, and tell the story of their picture. The ‘draw, write and tell’ technique was used to facilitate the discussion about children’s experiences of living with chronic pain. Children were positioned as ‘experts’ of their suffering (Horstman et al., 2008). In the second study, children were also provided with A4 blank paper and crayons, and they were invited to draw an activity they enjoy doing with their ill brother or sister. Instead of formally analysing the drawings, they were used as a prompt to elicit children’s explanations about its content, thus avoiding misinterpretations (Angell et al., 2015). In the following sections, we will discuss the potentialities and challenges of using the ‘draw, write and tell’ technique to explore children’s views on chronic illness.

STUDY 1: LIVING WITH CHRONIC PAIN: ACCOUNTS OF ILL CHILDREN THROUGH DRAWINGS Chronic pain was defined as pain that lasts more than a month beyond the expected course of an acute disease, healing, or injury (Maciver et al., 2010). To date, little is known about the lived experience of chronic pain in childhood and adolescence. What is known about the dayto-day experience of children living with chronic pain mainly comes from children with other health conditions (Hilário & Augusto, 2019). In addition, much of the existing knowledge about the topic comes from quantitative studies (Pope et al., 2017). Therefore, it is crucial to develop qualitative social research that attributes centrality to the child’s perspective and the way these actors experience chronic pain (Clemente et al., 2008; Maciver et al., 2010). The adoption of a holistic approach is crucial for the identification of key insights about children’s views on chronic illness (Pope et al., 2017). The seven children who participated in the study drew, wrote, and talked about their chronic pain experiences, also including a version of themselves in the picture. All the children drew

Using visual research methods for research with chronically ill children  201 themselves while experiencing pain. While four children only drew themselves, one child also included her mother in the drawing, one child included a friend, and another child included a healthcare professional. Children drew themselves in different places: outside their home waiting for the ambulance that would take them to the hospital due to a pain crisis (n = 1), in a garden (n = 1), at the hospital (n = 1), in their bedroom (n = 1), and outside playing football with a friend (n = 1). Two children simply drew themselves on blank paper. Regardless of their age, all children easily accepted the task of drawing, indicating that both teenagers and children feel comfortable with this method. This confirms that drawing is an accessible task for children of different ages (Horstman et al., 2008). Based on the drawings made, it was possible to understand some of the main elements characterising the pain experience of the children who participated in the research. Despite the subjectivity inherent in the materials produced (Angell et al., 2015), the researcher was able to access the aspects that children valued or highlighted when they felt pain, such as: i) the environment that surrounded them; ii) the people they were with; and iii) the actions taken. On the other hand, it was also possible to access absences; that is, aspects that children chose, consciously or unconsciously, not to include in the drawing (such as the absence of colour or surrounding elements). The interpretation made of both visible and invisible elements usually involves, in fact, some level of subjectivity (Angell et al., 2015). However, the possible distance between what the child intends to transmit and the researcher’s ability to understand can be mitigated with the double process of co-creation and co-interpretation inherent to the ‘draw, write and tell’ technique (Honkanen et al., 2018; Mitchell, 2006; Tay-Lim & Lim, 2013). In this sense, it is considered that the dialogue between the child and the researcher, as well as the reflexivity of these actors, are crucial elements for the richness of the data produced (Martin, 2019). Drawing offered children the opportunity to express their experiences of chronic pain in their own terms and to create rich visual representations of their experiences. This was the case of a child who drew several broken hearts to represent the intensity of her pain. Indeed, through drawing, children may open the door to issues that are not easily displayed (Zartler & Richter, 2014). For instance, a child disclosed during the ‘draw, write and tell’ interview that she was afraid of dying as she knew about a singer with her illness who had died recently. The child revealed that she talked about this concern with her stepfather, who reassured the researcher that this matter was acknowledged within her family. This shows that the ‘draw, write and tell’ elicitation tool enabled children to make visible issues that were invisible to the researcher but significantly marked children’s experiences of chronic pain. Two children also wrote about their experience of pain: ‘the mouth I do when I am not happy’ and ‘I cannot handle this anymore’. Writing enabled these two children to express their feelings in a complementary way to their drawings. This confirms that the use of both drawing and writing enables the production of ‘richer’ data (Angell et al., 2015). The articulation between different forms of expression allows the researcher to reinforce and clarify aspects that may have raised doubts (Caraher et al., 2004; Porcellato et al., 1999). Thus, for example, a caption on an ambiguous drawing can provide the necessary clues for a more effective and objective process of interpreting the child’s thoughts, emotions and feelings. It is recognised that the use of multiple methods can give rise to different ideas and perspectives (Angell et al., 2015). In this way, the articulation of data collection tools that stimulate different communicative capacities leads to the production of richer data. Through drawing, writing and telling, the child has the possibility of showing the researcher how they see their own world, as well as how they make sense of it (Guillemin, 2004; Punch, 2002).

202  Handbook of sensitive research in the social sciences When disclosing this information, the researcher was careful to support children and thereby offer them space to decide what they wanted to tell and when (Zartler & Richter, 2014). This was the case of a child who disclosed about self-medication and decided to change the topic of conversation when his mother entered the room. This situation illustrates the child’s willingness to share a personal and sensitive topic with the researcher while hiding this matter from his own mother. Whilst the researcher tried to conduct most interviews with children alone, in most cases the mother was present. Negotiating privacy to conduct interviews with children has been found to be difficult due to parental conceptions that they should be present (Mauthner, 1997). Nevertheless, when mothers were present, they were respectful and did not try to exert any control over children’s answers. Obtaining a separate space within the hospital to conduct the interviews was easy as healthcare professionals were sensitive to the issue of privacy. The power dynamics between the adult researcher and the interviewee child are of particular importance when research takes place in a healthcare setting. Indeed, hospitals are spaces where children have little control, and this may impact the research process (Martin, 2019). The elicitation tool ‘draw, write and tell’ enabled placing children at the centre of this process and overcoming power imbalances inherent in conducting research in a hospital.

STUDY 2: ELICITING SIBLINGS’ VOICES: THE IMPORTANCE OF THE ‘DRAW, WRITE AND TELL’ METHOD Children’s accounts have been absent in understanding the experiences of having a brother or sister who suffers from a chronic illness. Few studies have explored sibling caring roles and responsibilities within families of chronically ill children (Hilário, 2022). However, the limited existing research points to profound changes in the lives of children who have a brother or sister suffering from a chronic illness (Woodgate et al., 2016). It is not only daily life that changes, but also the way the child perceives the family and their role within it. Thus, it is important to listen to these actors and realise the impact that the chronic illness of their brother or sister has on their childhood and relationship with others. In the second study, the children were asked to draw themselves with their ill brother or sister doing an activity that they enjoyed. They were encouraged to think about their day-today life with their brother or sister and the way in which the illness shaped and influenced their family life. It is important to note that some children decided to also include brothers or sisters other than those with a chronic illness in the drawing. For example, an eight-year-old boy verbally expressed that all his brothers and sister were important to him, and he enjoyed being with all of them. In contrast, two sisters (aged ten and eight years) who were making the activity in the same room decided to not draw themselves together but only with their ill sister. As previously mentioned, the elements that children choose to include (or not include) in the drawing can provide important clues about the aspects that they value and/or are most present in their daily lives (Barfield & Driessnack, 2018). In this specific case, the option to include only the ill sister in the drawing seems to be related to conflicts that the participating children have with each other and which were made apparent during the interview. However, it can also indicate the centrality that the ill sister assumes in family dynamics. In fact, during the activity, the 10-year-old was constantly complaining about her younger sister, saying that she was bored. The drawings were an icebreaker that allowed the conversation to flow, first about the drawing itself and then about the family dynamics and the processes of relationality that

Using visual research methods for research with chronically ill children  203 otherwise could remain invisible. Indeed, the drawings allow the child to be brought into the situation of discussion relatively fluidly and peacefully, encouraging them to talk about subjects that are close to them (Horstman et al., 2008). By following a playful activity (drawing), the moment of the interview arises in a contextualised manner. Since the object of analysis is the work produced by the child, they naturally assume the roles of author and commentator of this subjective product (Literat, 2013). During the drawing activity, these two sisters expressed their worries about drawing their ill sister properly as they wanted the drawing of the wheelchair to be accurate. An eight-yearold girl expressed her fear of not drawing properly and, therefore, took 15 minutes before beginning the task. She asked her mother for ideas about what and how to draw, and her mother patiently replied that it was up to her. The girl decided to use a square, as she expressed she would like to draw a TV properly. These two examples are illustrative of the importance that children give to the act of drawing and to expressing their experiences as close to their reality as possible. In addition, these examples also express the difficulty that children feel in bringing to the drawing both their ‘absent body’ and that of those close to them (Martin, 2019). The process of transferring the visualised reality to the drawn reality can constitute a communication barrier. However, this challenge can be mitigated with the interview moment (Honkanen et al., 2018). Interestingly, some children did not make any physical distinction between themselves and their ill brother or sister. This was the case with an eight-year-old boy and a six-year-old girl. Even though their ill brother or sister used a wheelchair, these children decided not to draw it. For the six-year-old girl, it was more important to draw her own physical distinction: she was obese, and she expressed great concern about it during the conversation with the researcher. Drawings offer countless possibilities to children, allowing them to portray both what they consider to be real and what they would like to be real (Martin, 2019). Both situations allow the researcher to access relevant information, as by analysing expectations and/or the elements that are emphasised, it is possible to understand the main concerns of the children involved. Another aspect to consider in the drawing is the visual story that the child chooses to tell. In this regard, the researcher must be particularly attentive to the general composition of the drawing and its content, such as the space where the action takes place (Barfield & Driessnack, 2018). While for some children it was important to represent outdoor activities performed with the ill brother or sister, other children preferred to emphasise day-to-day interactions, such as watching TV together. In these cases, the children who participated in the research chose to portray the ordinary instead of specific activities or events (such as birthdays). While it was expected that the drawing activity would be exciting for all children, a sevenyear-old boy refused to participate in the task, saying that he did not know what to draw. The mother insisted that the child should participate in the study. The researcher respected the child’s decision not to draw and decided not to include him in the study. Later on that day, the mother sent a message to the researcher, saying that the child disclosed that he did not want to share his feelings with a stranger. By refusing to participate, this case shows that the drawing activity enables children to exercise their agency (Angell et al., 2015). In fact, through the use of the ‘draw, write and tell’ technique, children have the power to negotiate the ways and depths in which they wish to participate (or not) in the research. This type of challenge in the recruitment process is expected, especially in research that focuses on sensitive topics (Powell et al., 2020). To mitigate this, the various actors involved must be able to establish a relationship of trust (O’Brien et al., 2022). In this case, this mother’s initiative of sending a message to

204  Handbook of sensitive research in the social sciences the researcher explaining the reasons underlying her child’s refusal to participate in the study was illustrative of the partnership established with the researcher (Wright, 2015). In other situations, however, this may be challenging to achieve in just a single encounter.

WHAT DO WE LEARN FROM THE STUDIES: DISCUSSION The two studies presented here were guided by the fundamental rights of children to be heard on matters concerning them (United Nations, 1989). Children are active and competent agents of their worlds and should have a voice in societal matters that directly influence their lives (Tay-Lim & Lim, 2013). Despite their inherent vulnerability, children are capable of interpreting their reality and providing important information about their experiences (Brady et al., 2015; Jenkins, 2015). It is essential to recognise children’s agency and give them a voice so that they can speak out on issues that concern them (Valentine, 2011). While numerous studies have been conducted on the experience of chronic illness from an adult perspective, limited research has been conducted with children and young people about this experience. The knowledge of children affected by chronic illness has been under-studied, and thereby, it is important to address their points of view with thoughtfulness (Honkanen et al., 2018). While chronic illness might be a sensitive topic to discuss, it is important to highlight that sensitivity is experienced subjectively and shaped by cultural and social bounds (Powell et al., 2020). The sensitivity of the topic under study became evident in children’s drawings, namely in the manifestation of their emotions (Dickson-Swift et al., 2008). In addition, the children who participated in the study might be understood as a doubly vulnerable population. This might be so because of their child status as well as the existence of a health condition that can restrict their autonomy (Cheah & Parker, 2015). Nevertheless, the use of the ‘draw, write and tell’ method offered the children the possibility to openly express their experiences of living with a chronic illness (Study 1) or living with a chronic illness in the family setting (Study 2), recognising their agency and their right to participate in research. The analyses of the drawings allowed us to identify disease-related elements such as an ambulance, a hospital, a wheelchair, and children’s perceived intensity of pain. These representations elicited children to spontaneously disclose highly sensitive topics such as self-medication, fear of dying and family dynamics. The experience of living (Study 1) or having a sibling living (Study 2) with a chronic disease is differently perceived by each child. Thus, the ‘draw, write and tell’ method seems to be particularly suitable for exploring children’s experiences, allowing them to freely represent their inner world without constraining their responses. The ‘draw, write and tell’ method enhanced communication between the researcher and children. Drawing is a playful and familiar activity for most children (Pope et al., 2018b) enabling them to communicate about their experiences, which otherwise might be difficult using only language (Tarr et al., 2018). This child-sensitive method allowed the researcher to access issues that otherwise could be difficult (Driessnack & Furukawa, 2012). Given its coconstructed design, the method offered the possibility for the researcher to work with children, in contrast to the traditional approach of working on children (Literat, 2013; Mitchell, 2006). Furthermore, children may have time to think about what they would like to draw and tell the researcher, which might be key for them as they may need more time to process their ideas in comparison to adults (Angell et al., 2015). The method also offers children the possibility to negotiate their participation by choosing not to draw (Horstman et al., 2008). While ‘ethical

Using visual research methods for research with chronically ill children  205 symmetry’ (Christensen & Prout, 2002) may not be possible due to the inherent vulnerability of the child status (Hilário & Augusto, 2019), the method enabled the development of a more egalitarian relationship between the adult researcher and the participant child. The children were offered the chance to interpret their own drawings, making them ‘co-researchers’ (Christensen & Prout, 2002). In research with vulnerable individuals, such as children, it is important to be aware that there might be significant power imbalances. Usually, the researcher is considered the expert and tends to be the one who conducts the entire research process (Moore et al., 2008). However, the ‘draw, write and tell’ technique allows the traditional dynamics of power between researcher and participant to be changed (Martin, 2019). Even if it is the researcher who releases the first stimulus, it is up to the child to decide how they want to tell their story. Whether through the elements they choose to include in the drawing or through the narrative followed, the child has the power to determine part of the data production process (Aldridge, 2014). By giving children greater agency, this technique lessens the traditional hierarchy between the researcher and participants, thus contributing to greater compliance with ethical issues (Literat, 2013). In addition, children’s voices are potentially richer than those of adults acting on their behalf. By experiencing in the first person the impacts and effects of a chronic disease, children have a unique perspective that cannot be replaced or replicated accurately by other actors (Tay-Lim & Lim, 2013). Childhood health research is currently faced with an ethical dilemma based on the interplay of three demands: i) the need to provide access to childhood evidence-based healthcare; ii) ensuring that children’s and young people’s rights as research participants are fully respected; and iii) promoting children’s autonomy in making decisions about their participation in research and in giving their input to the research agenda (Wright, 2015). The adoption of a qualitative approach, such as the technique of ‘draw, write and tell’ is key to promoting the balance of these factors, as it allows children to speak out about sensitive issues and their perceived impact on their lives. On the one hand, by representing their ‘inner world’ through drawings, children are able to emphasise the aspects they consider most relevant; on the other hand, by not including some elements in their drawings, children are free to not address topics that make them uncomfortable. Moreover, the data gathered through this technique can have important implications at both theoretical and practical levels. Concerning the former, the knowledge gathered about children’s experiences with chronic pain may influence the direction of the future research agenda to promote children’s wellbeing. Regarding the latter, involving children in health research can lead to key insights about how to manage children’s chronic illnesses effectively. The drawings enable children to make visible certain details that otherwise could be missed by adults (Mitchell, 2006). The purpose of using a drawing activity is to offer children the possibility to explore, on their own terms, a matter that could be potentially sensitive to them. Drawing is a playful and accessible activity for most children, enabling them to be in control of what they would like to reveal to the researcher about their experiences (Martin, 2019). This also means that children should be able to decide the level of information they would like to disclose to the researcher (Zartler & Richter, 2014). Asking children to draw their experiences and perceptions and then tell the researcher about it places them as the ‘experts’ and increases their sense that their thoughts and feelings are valued (Horstman et al., 2008). Making children accountable for the interpretation process of their own drawings places the researcher in the position of the listener, which can be considered more ethical from a methodological point of view (Literat, 2013).

206  Handbook of sensitive research in the social sciences The materialities involved in the research process can determine the type of material produced (Mauthner, 1997). Using ‘draw, write and tell’ in a space that is familiar to the child (such as their room) can evoke specific thoughts, emotions and feelings. On the other hand, applying the method in a new environment can lead to the child forgetting important elements, which would only be evoked with certain visual stimuli. The ‘draw, write and tell technique allows the child to express emotions that could remain invisible due to language barriers (Eggleton et al., 2017). When associated with the description of a disease, drawings tend to reflect the frustration, embarrassment, and anxiety of the child, usually through the use of different colours and symbols (Eggleton et al., 2017). The ‘spaces of research’ and the actors that are present have a strong impact on the type of data that is produced (Barker & Weller, 2003). So that children can effectively be active collaborators in the investigation process, it is crucial that they feel safe and comfortable (Martin, 2019). In this sense, the researcher must make every possible effort to ensure an environment that allows children to express themselves freely. Faced with the impossibility of guaranteeing the ‘ideal’ conditions, the researcher must use their ‘ethical reflexivity’ and ‘ethical sensitivity’ to ensure the best possible outcome (Hilário & Augusto, 2020; Weaver, 2007). Reflexivity is key in this process as it allows the researcher to reflect on the involvement of children, as well as on their own involvement (Pope et al., 2018b). Through reflexivity, the researcher will be able to respond to unexpected situations that may happen along the research process (Guillemin & Gillam, 2004). Indeed, working with children might increase the unpredictability of the research process, leading the researcher to adopt anticipatory and situational strategies (Hilário & Augusto, 2019). For instance, the researcher had to use ‘ethical mindfulness’ (Warin, 2011) in the episode of a child who refused to draw and participate in the study, and the child who constantly insisted that the researcher play with him. Researchers need to be well-prepared to conduct research with children (a vulnerable population) on the experiences of chronic illness (i.e., a sensitive topic). The ‘draw, write and tell’ method might enable researchers to overcome these difficulties.

CONCLUSION AND FUTURE DIRECTIONS Based on two sociological studies conducted in Portugal on chronic childhood illness and its impact on family dynamics, it was possible to carry out some reflections on the use of the ‘draw, write and tell’ technique. It is considered that this technique is flexible enough to value the child’s agency and communication skills (Horstman et al., 2008). Among the main potentialities of this data collection instrument, the following stand out: i) the richness of the data produced; ii) the freedom and fluidity it allows; iii) the articulation of different communication tools; iv) the applicability to children of different age groups and from different sociocultural contexts; v) the collaborative nature; and vi) the reduction of power imbalances. Among the main challenges, the following were identified: i) the subjectivity of the designs; ii) the constraints associated with the data interpretation process; and iii) the difficulty in guaranteeing an adequate environment to pursue the technique. The empirical evidence derived from the two studies affirms the legitimacy of the ‘draw, write and tell’ method as an instrumental approach for investigating the experiences of chronic illness among children and young people. Confronted with a myriad of global health challenges that have the potential to exacerbate vulnerability, it is imperative to prioritise the implementation of creative and participatory

Using visual research methods for research with chronically ill children  207 methodologies. Notably, the ‘draw, write and tell’ technique emerges as a cornerstone method that facilitates a nuanced and comprehensive exploration of the unique experiences of children and young people. Beyond its utility as a research tool, this method catalyses fostering empathy, driving evidence-based interventions, and formulating policies that prioritise the health and well-being of children and young people.

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Using visual research methods for research with chronically ill children  209 Powell, M. A., Graham, A., McArthur, M., Moore, T., Chalmers, J., & Taplin, S. (2020). Children’s participation in research on sensitive topics: addressing concerns of decision-makers. Children’s Geographies, 18(3), 325–338. Pridmore, P. & Bendelow, G. (1995). Images of health: exploring beliefs of children using the ‘drawand-write’ technique. Health Education Journal, 54(4), 473–488. Punch, S. (2002). Research with children: The same or different from research with adults? Childhood, 9(3), 321–341. Spencer, G., Fairbrother, H., & Thompson, J. (2020). Privileges of power: Authenticity, representation and the “problem” of children’s voices in qualitative health research. International Journal of Qualitative Methods, 19, 1–8. https://doi​.org​/10​.1177​/1609406920958597. Tarr, J., Gonzalez-Polledo, E., & Cornish, F. (2018). On liveness: using arts workshops as a research method. Qualitative Research, 18(1), 36–52. Tay-Lim, J. & Lim, S. (2013). Privileging younger children’s voices in research: Use of drawings and a co-construction process. International Journal of Qualitative Methods, 12, 65–83. United Nations (1989). Convention on the rights of the child. United Nations. Valentine, K. (2011). Accounting for agency. Children and Society, 25(5), 347–358. von Benzon, N. & van Blerk, L. (2017). Research relationships and responsibilities: ‘Doing’ research with ‘vulnerable’ participants - introduction to the special edition. Social & Cultural Geography, 18(7), 895–905. Warin, J. (2011). Ethical mindfulness and reflexivity: Managing a research relationship with children and young people in a 14-year qualitative longitudinal research (QLR) study. Qualitative Inquiry, 17(9), 805–814. Weaver, K. (2007). Ethical sensitivity: State of knowledge and needs for further research. Nursing Ethics, 14(2), 141–155. Woodgate, R. L., Edwards, M., Ripat, J. D., Rempel, G., & Johnson, S. F. (2016). Siblings of children with complex care needs: their perspectives and experiences of participating in everyday life. Child: Care, Health and Development, 42(4), 504–512. Wright, K. (2015). Are children vulnerable in research? Asian Bioethics Review, 7(2), 201–213. Zartler, U. & Richter, R. (2014). My family through the lens. Photo interviews with children and sensitive aspects of family life. Children and Society, 28(1), 42–54.

15. Ethical guidelines for doing research with children in sensitive subject areas Ingrid Stapf and Jessica Heesen

INTRODUCTION Research ethics can easily be seen as an ‘infringement’ on researchers, making it more difficult for them to conduct empirical research or complicating the process by having to involve ethics committees. We would instead like to suggest a different view on research ethics by offering a set of guidelines to help reflect on the ethical dimension of doing research in sensitive subject areas with children as a particularly vulnerable societal group (see also Chapters 16, 17 & 18 in this volume). We argue that not only have children been granted different rights—with rights to protection but also participation being central—internationally (such as the UN Convention on the Rights of the Child [UN CRC], United Nations, 1989), but also that by doing the research in an ethically sound way, this also increases the validity of the results, and offers children a better way of sharing their insights or experiences that can then lead to more tailored educational or regulatory measurements addressing their needs best. The concept presented here delineates ethical guidelines on how to conduct research with children in sensitive subject areas (Stapf et al., 2022).1 They are based on a holistic approach grounded in children’s rights and are intended to serve as a basis for decision-making when conducting research with children in sensitive subject areas such as civil security research. Our main motivation to develop these ethical guidelines stems from the increasing security threats that children face online (contact risks like sexual assault on children in online communication, cybergrooming, hate speech, or cyberbullying for example). These risks bring to light the tension between different children’s rights, particularly between the right to participation and the right to protection. Following a holistic approach to children’s rights implies that all rights of children are equal, while special attention should be given to the evolving capacities of the child as well as to the special needs of participating children. These claims follow not only legally from international law granting children fundamental human rights (UN CRC, 1989), but also ethically, in that children are not merely perceived as objects of regulatory measures (and research). Rather, children should be seen and respected as acting subjects in their environments. Their perspectives, points of view and proposed solutions should be heard and considered—not only because it is their right, but also because it makes research outcomes more meaningful and allows for measures to be more target-orientated. We argue that following a children’s rights-based approach, research involving children should be conceptualised with children, and research ethics should be more child-centred. These new models should be based on studies taking research ethics into account. The motivation for our approach derives from the precarious situation of children in digital environments. However, the ethical guidelines for conducting research with children also apply in general to research with minors. One major aim of child-centred approaches is to protect but 210

Ethical guidelines for doing research with children in sensitive subject areas  211 also to empower children, thereby increasing their ability to participate as active subjects in digital environments, as well as in research projects regarding their wellbeing or their core interests and needs. After introducing our concept of research ethics, we list 12 ethical guidelines for reflection during the entire research process (from conception to distribution) and conclude with suggestions on what we think follow from this and some open questions.

ABOUT RESEARCH ETHICS AND ETHICAL GUIDELINES FOR RESEARCH2 While digital media are providing young people globally with new opportunities relating to their rights rights to education and information, social connectivity, rights to participation, expression of views and rights to be heard, access to games and leisure online), a lack of effective platform regulation and protection of children has made them more prone not only to content-related risks but also interactive risks (Stapf, Biess, Pfetsch & Paschel et al., 2023a). Interactive risks include contact risks such as when young people interact with unknown others through chats that can lead to security threats like cybergrooming) as well as conduct risks (when children put others (and themselves) at risk, such as, when they produce hateful material about others, like in the case of cyberbullying or hate speech). These risks range from hate speech and disinformation to cybergrooming or cyberbullying, as well as privacy concerns (see 4C model of online risks; Livingstone & Stoilova, 2021). Therefore, digital media provide children with opportunities but also make them vulnerable in ways that impact their right to protection, security, privacy, and their overall ‘right to an open future’ (Feinberg, 1980; Stapf, 2022; Stapf et al., 2023c). Tensions between children’s rights to participation and protection exist not only regarding the production, usage, or distribution of digital media but also in the research about and especially research with children. This becomes clear when conducting research in sensitive subject areas concerning disturbing, painful, or even traumatic experiences. Involving children in research, not only as subjects of research but as collaborators, will provide a better understanding of where children are confronted with interactive risks, how they deal with and cope with these risks, where they need more help and empowerment, what they see as possible solutions, and what kind of support is needed so children can fully thrive online. Nevertheless, it should be considered that there is a clear risk of re-traumatisation or fear that could lead to less participation online in anticipating these risks. Interviewing children about their experiences and perspectives on sensitive topics can result not only in ‘feelings of shame (in focus groups towards peers or interviewers) or guilt (towards parents who might have not given permission to use media in the first place), but also conflicts of loyalty (if offenders are known to the family or visit the same school) or re-traumatization (by re-telling stories or hearing those of others).’ It can, in some cases, even ‘lead to less participation online if it increases children’s fear of encountering these risks’ (Stapf et al., 2023a, p.394). This tension is amplified when dealing with young persons, since specific vulnerabilities exist when research is done about and with (especially, but not only, younger) children. These vulnerabilities can stand in conflict with a child’s emerging autonomy (Giesinger, 2019). Childhood is a biologically driven and socioculturally constructed phase of cognitive, emotional and social development where competencies to make sound decisions and choices, or

212  Handbook of sensitive research in the social sciences even notice or verbalise when boundaries have been overstepped, are still developing. These (as the UN CRC calls them) ‘evolving capacities’ are highly relational, as they are embedded in relationships and based on active and interactive experience as well as support in dealing with challenging or even threatening experiences. According to a child rights perspective, children are acting subjects who are morally equal while being more vulnerable than adults. Being vulnerable implies ‘being susceptible to harm’ (Giesinger, 2019, p.217). Children are developing cognitively and emotionally while still building their lived experiences that will have a possible long-term impact on their lives as adults. Therefore, ‘paternalistic attempts to protect children in research, without involving children themselves in the research process, may interfere with children’s self-determination rights’ (Stapf et al., 2023a, pp.395–396). This might impact the experiences that are crucial for their healthy development as well as their wellbeing. But children are not only more vulnerable because childhood is a developmental stage in the life course; childhood is also embedded in the generational order that often comes along with power asymmetries and normative assumptions about childhood that tend to be deficit-orientated. As a result, children ‘are also made more vulnerable because their needs and interests are not equally addressed in research on the digital landscape. Vulnerability also has to do with a lack of resources, knowledge or support to protect oneself’ (Goodin, 1985, cited in Stapf et al., 2023a, p.394). Possible scenarios in research that need special ethical consideration are that children might associate interview situations with school settings, they might be aware of generational power asymmetries, or use language differently when talking about abuse or criminal offences, or they might not even perceive them as such (Stapf et al., 2023a). While this cannot always be fully anticipated, the care needed will also depend on the maturity and vulnerabilities of the involved children. To be prepared for scenarios like this, special guidance and prior training of researchers to sensitise them to children’s needs and vulnerabilities may be required. This is particularly important when children open up to the researchers and see them as potential caregivers as their trust grows (for instance, in longitudinal studies). Clear limits, clarification of roles, and supervision of the researchers can be helpful here. For example, when researchers first become aware of sexual abuse during an interview, a network of support systems (including psychology, family therapy, legal prosecution and ethical supervision) should be in place to meet the needs of the affected child and the researchers (Stapf et al., 2023a). Therefore, conducting research with children in sensitive subject areas implies going beyond existing professional codes of ethics and requires ethical guidelines that are more child-centred. These should focus on the needs and interests of children as a societal group, while they should also fit the needs of individual children throughout the research process.

CHILDREN’S RIGHTS TO BE HEARD While conducting research ethically stems from children’s rights to be heard and their right to participate in all aspects of life (Art. 12 UN CRC, 1989), this approach is likely to also increase the reliability and validity of the results and the practical measures that follow them. The use of age-appropriate methods can help to increase the reliability of empirical data collection, as it can be assumed that questions are understood correctly and that children can express their answers according to their abilities and preferences. As a result, the topic under investigation is captured more precisely, and the results are more accurate (reliability). In

Ethical guidelines for doing research with children in sensitive subject areas  213 addition, developing research questions in a process that involves children can help to ensure that topics relevant to children are addressed without overlooking key aspects (content validity). The results also become more valuable in other respects: the results have more impact on children’s everyday lives and provide them with greater support (practical impact) (Stapf et al. 2023a). Looking at the field of research regarding security threats for children in the online environment, this implies a shift that is also noticeable in the field of media regulation and media governance. As an example, children in Germany are using various media at younger ages (Feierabend, Rathgeb, Kheredmand & Glöckler, 2022) while platform regulation is still dealing with the diffusion of responsibility for their effects on vulnerable groups (Prinzing & Stapf, 2024). Media literacy is not a systematic part of school education, while parents are often overwhelmed. Considering that case numbers of sexual assault on children online have risen (Polizeiliche Kriminalstatistik, PKS, 2022), ‘this should not lead to restricting children’s rights to information and participation in the online world in order to protect them’; instead, we should ‘strive for a combination of better platform (self-)regulation, media education and literacy, helping systems catering to children as well as more participatory research’ (Stapf et al., 2023a, p.397). Child-centred approaches are increasingly acknowledged both in theory and policy. In 2021, General Comment 25 to the UN CRC on children’s rights in relation to the digital environment (United Nations Committee on the Rights of the Child, 2021) has translated children’s rights into digital contexts and is receiving growing attention in state measures, including media regulation. New ways of regulation are being discussed, and advisory boards are starting to include young persons. However, what it will take to implement a child-based approach is gathering more empirical data based on participatory models of research (namely children as co-researchers) (Stapf et al., 2023a). All in all, the aforementioned difficulties and challenges regarding this necessary research do not imply that research should not be done at all. Rather, the ethical perspective may be seen as helpful because it deals with different values or norms being in tension. This ethical process of reflecting on the goals of research, the methods designed and used, the norms in tension, and how to proactively consider the interests of sensitive people involved will also make the research itself better. Therefore, it is not a matter of if but how this research is done. In the following section, we list our ethical criteria that were developed by an interdisciplinary group of researchers (SIKID) for conducting child-centred research in sensitive subject areas with children.

12 CRITERIA FOR ETHICAL REFLECTION ON CHILD-CENTRED SENSITIVE RESEARCH3 1.

Consider the Relevance and Justification of the Research Goals

From a research ethics perspective, planning and implementing research projects with children on sensitive, potentially traumatic topics (that is, emotional or physical violence or abuse) places unique demands on the research process. These topics require critical reflection on the research goals’ relevance and justification. This means that the participation of children must be an essential contribution to the research (and not only a ‘nice to have’). Especially for

214  Handbook of sensitive research in the social sciences sensitive research, it must be ensured that the research cannot be conducted in any other way. This is important to avoid an unnecessary burden that the research could have on children. The priority should be to consider children’s best interests throughout the whole project. 2.

Reflect on Ethical Requirements and Conduct Systematic Impact Analysis

Ethical guidelines need to be aware of the tension between the necessity of care towards minor research participants and the achievement of the research goals. Throughout the entire research process (notably conception, implementation and distribution of the project results), ethical principles that fully prioritise the interests of children should be sought after. Ethical requirements should be based on core principles, such as the principles of self-determination, harm avoidance, welfare, and justice. For this, a systematic impact analysis should be carried out to ensure good research practice. 3. Obtain Informed Consent from Children in a Child- and DevelopmentallyAppropriate Manner When conducting research with children, it is important to carefully consider the methods used in obtaining informed consent to allow them to actively decide to participate in the research process. From a research ethics standpoint, informed consent—beyond legal requirements— must always be obtained. In this context, child- and age-appropriate forms of consent must be established in order to involve children as active participants in research. Furthermore, forms of consent must enable children to make their own decisions while not overburdening them in the process. 4.

Address Methodology Considerations for Research with Children

Doing research with minors requires prior methodological consideration. Deciding upon a particular research method and the ways in which to implement it carries significant ethical relevance. Considering that children are still in a phase of physical, cognitive, emotional and social development, their ability to access and understand information about different aspects of research may vary significantly depending on their (individual) developmental stage. Younger children, for instance, may find it more challenging to make sense of given information or instructions and, therefore, are considered particularly vulnerable due to their dependency on extensive care and protection from their legal guardians. It is the researcher’s responsibility to assess the possible psychological demands imposed on children, regardless of the given consent by their legal guardians. The research process must be suspended immediately should the researcher realise that the wellbeing of the child is put at risk. Such scenarios do not have a universal solution. Instead, a research strategy should be used that best suits the specific research question and the target group while enabling the child’s right to participate adequately in the research process. 5.

Protect Children from Stressful Situations when doing Research with them

When dealing with sensitive topics such as physical and/or emotional abuse, there is a risk that participating children may experience intense stress situations or even re-traumatisation.

Ethical guidelines for doing research with children in sensitive subject areas  215 Children must be protected from this and receive psychological support. This risk must be adequately assessed in advance, and precautions need to be taken (such as by installing an emergency plan). In addition, peer consulting or supervision of the research team by a third party (a psychologist or counsellor, for example) can help anticipate and reflect on difficult situations. Moreover, it can help address questions that arise when working with children surrounding sensitive topics, especially trauma. This should lead to creating a research environment that children experience as safe, trustworthy, and mindful of their needs. 6.

Prevent Repeated Experiences of Victim Trauma

When investigating subjective perceptions of safety or means of establishing security, research participants may be exposed to unpleasant or (re)traumatising experiences. Sensitive research topics and vulnerable participants mandate the need to address the frequency and intensity of the questioning necessary for knowledge gain and to guarantee the protection of involved children before commencing. A delicate questioning methodology must, therefore, be ensured to counteract (re)victimisation. 7.

Reflect on the Scope and Limits of Professional Roles

Challenges can arise from role diffusion, especially in research on sensitive topics or with vulnerable groups. When doing research with (heavily stressed or particularly young) children, researchers should not assume the role of therapists. Likewise, researchers should not be perceived by participants as long-term caregivers who support them or represent their interests to others. Researchers should be aware of their responsibilities towards children in all research phases, especially if trusting relationships develop during research (such as in longitudinal studies). To sharpen professional and ethical attitudes, training for researchers along with supervision in the research process continues to be relevant. Not only is it important to provide appropriate care for the children involved to help avoid re-traumatisation, but it is also necessary for researchers to critically reflect on their own roles and boundaries due to the demanding nature of the research. Ultimately, researchers should be cognisant of their own self-care. 8.

Initiate Cooperation and Supervision

The research process often involves cooperation with different actors surrounding the child respondents. The respective (professional) competencies should be clarified to enable cooperation that provides the most complete network possible for the young people involved in the research process. Cooperating actors include the respondents’ legal guardians and other people they relate to, such as pedagogical staff at schools and daycare centres, as well as social workers, psychologists, educators, and teachers. It may be advisable to involve these actors in the planning of the interview (for instance, wording of the questions, conceptualisation of the interview setting), pre-tests, and follow-up. This can contribute to maintaining the professional boundaries of the researchers while ensuring adequate care for the participants.

216  Handbook of sensitive research in the social sciences 9.

Ensure Confidentiality and Address Privacy Concerns

The data collected during interviews usually contains personal information and should be treated carefully. Participants in empirical research may be at risk of potential privacy violations. In principle, the right of involved children to a self-determined and open future must be ensured by protecting their data. A trustworthy collaboration in the research process requires the assurance of confidentiality, except in cases of criminally relevant behaviour. 10.

Reflect on the Role of Legal Guardians in Research

Research involving minors can legally depend on the child’s age and might require the consent of their legal guardians in addition to that of the child. It is necessary that research protocols are in place and that there is a safe space for children provided during the interviews. From a research ethics perspective, parents or legal custodians must be involved in the research process from the start, as they have both custody rights and legal duties. Likewise, from a children’s rights perspective, parents have a special duty of care (Art. 5 UN CRC, 1989), as they (usually) know their children best and can, therefore, assess what is (not) good for the wellbeing of their child. At the same time, the needs of the participating children, apart from parental custody rights, must be sufficiently taken into account to ensure the individual wellbeing of the child. 11.

Allow Space for Moral Integrity and Transparency during Participation

Children have a right to participate in research that concerns them (Art. 12 UN CRC, 1989). In participatory processes, it is essential to acknowledge the importance as well as the feasibility of participation in the research process. This needs to be made transparent to all participants. The consequences of participation should repeatedly be reflected upon throughout the entire research process. After all, such forms of participation operate in predefined structures but still need to remain flexible and transparent to find the appropriate research methods in individual studies. It is desirable to actively involve children in the planning stages of the participation. Subsequently, children should also be provided with the appropriate information and the chance to play a participating role in evaluating the results of the study. In sum, children should be interviewed as acting subjects, in that they are not purely objects of interviews. At the same time, the interview needs to include their perspectives as affected persons, especially when it comes to their experiences. 12.

Develop Child-Friendly Forms of Communication and Ensure Accessibility

Research with young people is different in multiple regards from research with adults. Apart from the more complex ethical requirements that arise due to childhood being a phase of vulnerability, there are asymmetrical social and generational power structures between children and adults. These asymmetries also (often implicitly) flow into research and should be reflected upon. It is important to be aware of these asymmetrical relationships, not least because children may experience research situations as a form of a ‘test’ in which they must respond to the questions and tasks ‘correctly.’ Particular attention should be paid to inclusive language and child-friendly environments. This is especially necessary when working with

Ethical guidelines for doing research with children in sensitive subject areas  217 children with disabilities or special needs. To achieve this, the entire communication of the research process should be tailored to the needs of the participants.

CONCLUSION AND FUTURE DIRECTIONS Research ethics orientated towards children’s rights implies that ethical principles are discussed from the perspective of children and that ethical questions are considered together with children in interdisciplinary teams of scientists. This approach invites a paradigm shift in ethical discourse, which—at least in philosophy—is often still based on deficit-orientated concepts of childhood. This could be facilitated by ethics committees or ombudsmen to provide independent and rapid support to research teams in specific cases. Additionally, gathering information and resources on research ethics on a platform and providing a space for sharing ideas, practical experiences, and best practices could allow researchers to collaborate in expanding child-centred research and research ethics to promote children’s rights. One particular area of exchange for researchers could be issues of informed consent for different groups of children in different contexts. In empirical research, the principle of informed and decisional consent (Eyal, 2019), is considered crucial to an ethically reflective research process. But its implementation, associated with standardised information about objectives, methods, and risks, autonomy, and the ability to withdraw consent at any time, contains fundamental principles as found in various national and international research regulations (World Medical Association [WMA], 2013). However, the developmental skills required for informed consent are poorly researched (Cotrim, Granja, Carvalho, Cotrim & Martins, 2021). Although the law (including the General Data Protection Regulation, GDPR) speaks to case-by-case decisions about whether or not individuals are capable of giving informed consent, only general age limits are commonly used in research practice to determine whether young people or their parents (or guardians) should give informed consent. We argue that children of all ages must be asked whether they are willing to participate in empirical research, independent of their parents’ informed consent. This is consistent with the right of children to be informed about all matters concerning them. Another area for exchange is age-appropriate and context-related approaches; these involve designing methods and processes for different research settings and for different target groups (such as children with disabilities, children with refugee experiences). The question about doing research with and about children on sensitive topics, therefore, is not if it should be done, but how. Crucial criteria for ‘knowing how’ in an ethically reflected way are the choice of suitable (participative) empirical methods, a child-centred explanation of informed consent, and—as the most important guiding principle—careful consideration of the best interests of the involved children. The participation of children in online communication especially offers new potential and also new requirements for research about and with children. According to a UNICEF study, children constitute one-third of the users of the internet globally (Livingstone, Carr & Byrne, 2016). Digital communication and interaction are increasingly embedded parts of childhood and play important roles in the child’s development and wellbeing. Knowledge about modern childhood is closely linked to research on children’s experiences and actions online. At the same time, ethical questions about doing research on social media (franzke et al., 2020), or using personal data for prediction in the field of security (Kaufmann et al., 2019) apply to all

218  Handbook of sensitive research in the social sciences kinds of research in digital environments. Thinking about new normative preconditions of online research, therefore, shows its new relevance for scientific findings about society as a whole. But even if the online world can be challenging and sometimes dangerous, internet-related risks should not lead to restricting children’s rights to information and participation online in order to protect them. Rather, we should strive for a combination of better platform (self-) regulation, media education and literacy, helping systems catering to children, as well as more participatory research (Stapf et al., 2023a, p.397). Research covers not only empirical studies but also plays a critical role in the implementation of values and norms in the development of technological devices and living worlds that are driven by technology. Securing a children’s perspective in times of digitalisation requires embedding ethicists and ethical thinking in the design and in the business models. Only a protected (digital) space enables children to test their autonomy, and only the acceptance of children’s claims to self-determination makes the idea of protection meaningful, which leaves enough room for personal development and freedom, as is central to moral behaviour (Stapf, 2012). We recommend approaches that take children’s rights into consideration, which are not only based on avoiding certain harms or risks to children, but also try to promote children and offer them environments in which they can develop into responsible and socially competent personalities. This may also be understood as a possible shift to move the focus away from harm prevention towards issues of positive promotion and support (Stapf et al., 2023a). Current developments show the growing importance of concepts that consider values by design (Flanagan, Howe & Nissenbaum, 2008). That includes ‘privacy by design,’ which is also very relevant for the protection and informational self-determination of children (Stapf et al., 2023a) or ‘rights by design’ (see Designing for Children’s Rights [D4CR], 2022) which empower children in the digital environment. Additionally, the Digital Services Act (DSA) of the European Union strengthens the importance of a child-friendly design. Here, due diligence requirements relate to all phases and aspects of the services being offered: they range from the conception and development of the entire service and individual functions to the technical and contractual design of access, to the design of default settings and age-dependent functionalities (Stapf et al., 2023a). When taking these developments into consideration and adopting a proactive approach to building more child-friendly digital environments, it becomes clear that research, development, and the practical applications for child-friendly technologies should be built on child-centred approaches and ethical guidelines enabling them. In this chapter, we offered 12 guidelines that might help orient future studies in this direction. What will become increasingly important is developing more child-centred methods in interdisciplinary teams and possibly even including children in developing research ethical concepts in sensitive subject areas.

NOTES 1. Developed in the project SIKID (“Security for Children in the Digital World’), funded by the German Federal Ministry of Education and Research (funding reference 13N15884).

Ethical guidelines for doing research with children in sensitive subject areas  219 2. The following text refers in part to a commentary in the Journal of Children and Media elaborating on the need for more child-centred methods (Stapf, Biess, Pfetsch & Paschel, 2023a). 3. These criteria are part of Stapf et al., 2022.

REFERENCES Cotrim, H., Granja, C., Carvalho, A. S., Cotrim, C., & Martins, R. (2021). Children’s understanding of informed assents in research studies. Healthcare, 9(7), 871. https://doi​.org​/10​.3390​/ healthcare9070871. Designing for Children’s Rights [D4CR] (2022). Designing for children’s rights: Design principles. (Version 2.0, July 2022), accessed 25 September 2024 at https://chi​ldre​nsde​signguide​.org​/wp​-content​ /uploads​/2022​/07​/ D4CR​-Design​-Principles​-2​.0 ​-2022​- 07​-12​.pdf. Digital Services Act, Regulation (EU) 2022/2065 of the European Parliament and of the Council of 19 October 2022 on a Single Market For Digital Services and amending Directive 2000/31/EC. Eyal, N. (2019). Informed consent. In E. N. Zalta (ed.), The Stanford encyclopedia of philosophy (Spring 2019 edition). Metaphysics Research Lab, Stanford University, accessed 25 September 2024 at https://plato​.stanford​.edu​/archives​/spr2019​/entries​/informed​-consent/. Feierabend, S., Rathgeb, T., Kheredmand, H., & Glöckler, S. (2022). KIM 2022. Kindheit, Internet, Medien. Basisuntersuchung zum Medienumgang 6- bis 13-jähriger in Deutschland. Medienpädagogischer Forschungsverbund Südwest, accessed 25 September 2024 at https://www​ .mpfs​.de​/fileadmin​/files​/Studien​/KIM​/2022​/KIM​-Studie2022​_website​_final​.pdf. Feinberg, J. (1980). A child’s right to an open future. In W. Aiken & H. LaFollette (eds), Whose child? Parental rights, parental authority and state power (pp.124–153). Minneapolis, MN: Adams & Co. Flanagan, M., Howe, D. C., & Nissenbaum, H. (2008). Embodying values in technology: Theory and practice. In J. Van den Hoven & J. Weckert (eds), Information technology and moral philosophy (pp.322–353). Cambridge: Cambridge University Press. https://doi​.org​/10​.1017​/CBO9780511498725​ .017. franzke, a. s., Bechmann, A., Zimmer, M., Ess, C. M. and the Association of Internet Researchers (2020). Internet Research: Ethical Guidelines 3.0, accessed 25 September 2024 at https://aoir​.org​/ reports​/ethics3​.pdf. General Data Protection Regulation, Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC. Giesinger, J. (2019). Vulnerability and autonomy – Children and adults. Ethics and Social Welfare, 13(3), 216–229. https://doi​.org​/10​.1080​/17496535​.2019​.1647262. Goodin, R. (1985). Protecting the vulnerable: A re-analysis of our social responsibilities. Chicago: University of Chicago Press. Kaufmann, M., Egbert, S., & Leese, M. (2019). Predictive policing and the politics of patterns. The British Journal of Criminology, 59(3), 674–692. https://doi​.org​/10​.1093​/ bjc​/azy060. Livingstone, S., Carr, J., & Byrne, J. (2016). One in three: Internet governance and children’s rights. Innocenti discussion paper No. 2016–01. UNICEF Office of Research, Florence, accessed 25 September 2024 at https://www​.unicef​-irc​.org​/publications​/pdf​/idp​_2016​_01​.pdf. Livingstone, S. & Stoilova, M. (2021). The 4Cs: Classifying online risk to children. Leibniz-Institut für Medienforschung Hamburg, Hans-Bredow-Institut (HBI) & CO:RE – Children Online: Research and Evidence. https://doi​.org​/10​.21241​/ssoar​.71817. PKS. Polizeiliche Kriminalstatistik (2022). Bundeskriminalamt (ed.), accessed 25 September 2024 at https://www​.bka​.de​/ DE​/Akt​uell​eInf​orma​tionen​/Sta​tist​iken​Lage​bilder​/ Pol​izei​lich​eKri​m ina​lsta​ tistik​/ PKS2022​/pks2022​_node​.html. Prinzing, M. & Stapf, I. (2024). Gutes Leben im Digitalen regeln. Eckpunkte einer ethisch und multiperspektivisch ausgerichteten Media Governance [submitted for publication]. In M. Litschka, C. Paganini & L. Rademacher (eds), Digitalisierte Massenkommunikation und Verantwortung. Politik, Ökonomik und Ethik von Plattformen. Baden-Baden: Nomos.

220  Handbook of sensitive research in the social sciences Stapf, I. (2012). Vom gelingenden Online-Leben – Ethische Dimensionen des Social Webs fü r Kinder. In I. Stapf, A. Lauber, B. Fuhs, & R. Rosenstock (eds), Kinder im Social Web. Qualität in der KinderMedienKultur (pp.27–49). Baden-Baden: Nomos. Stapf, I. (2022). Das Recht auf eine offene Zukunft. Datenschutz und Datensicherheit, 46(6), 339–345. https://doi​.org​/10​.1007​/s11623​- 022​-1616​-5. Stapf, I., Bieß, C., Heesen, J., Adelio, O., Pavel, C., Andresen, S., Dreyer, S., Lampert, C., Paschel, F., Pfetsch, J., & Thiel, K. (2022). Zwischen Fürsorge und Forschungszielen. Ethische Leitlinien für die Forschung mit Kindern zu sensiblen Themenbereichen. [Between caring and research goals. Ethical guidelines for research with children on sensitive topics]. Materialien zur Ethik in den Wissenschaften, Band 20, accessed 25 September 2024 at https://sikid​.de​/content​/files​/2023​/07​ /SIKID​-Forschungsethisches​-Konzept​.pdf. Translated short version: Ethical Guidelines for doing research with children in sensitive subject areas (2023), accessed 25 September 2024 at https://uni​ -tuebingen​.de​/fileadmin​/ Uni​_Tuebingen​/ Einrichtungen​/ IZEW​/2​_ Forschung​/ Ethical​_ guidelines​ _doing​_ research​_with​_children​_2023​.pdf. Stapf, I., Biess, C., Pfetsch, J., & Paschel, F. (2023a). Respecting children`s rights in research ethics and research methods. Journal of Children and Media, 17(3), 393–399. https://doi​.org​/10​.1080​/17482798​ .2023​.2235815. Stapf, I., Dreyer, S., Schelenz, L., Andresen, S., & Heesen, J. (2023b). Strengthening children’s rights through the Digital Services Act (DSA): Towards best practice approaches. Zenodo. https://doi​.org​ /10​.5281​/zenodo​.10156939. Stapf, I., Meinert, J., Heesen, J., Krämer, N., Ammicht Quinn, R., Bieker, F., Friedewald, M., Geminn, C., Martin, N., Nebel, M., Ochs, C., Watzinger, L., & Baur, A. (2023c). Privacy and children’s rights. White Paper. Friedewald, M. et al. (eds), Fraunhofer Institute for Systems and Innovation Research ISI, Karlsruhe, accessed 25 September 2024 at https://publica​-rest​.fraunhofer​.de​/server​/api​/core​/ bitstreams​/ b3355a4d​-73cb​- 454a​-bd37​-df3d0be7bf91​/content. UN Committee on the Rights of the Child (2021). General comment No. 25 on children’s rights in relation to the digital environment (CRC/C/GC/25), accessed 25 September 2024 at https://tbinternet​ .ohchr​.org/​_layouts​/15​/treatybodyexternal ​/ Download​.aspx​?symbolno​= CRC​/C​/GC​/25​&Lang​=en. United Nations. (1989). Convention on the Rights of the Child [UN CRC], accessed 25 September 2024 at https://www​.ohchr​.org​/sites​/default​/files​/crc​.pdf. World Medical Association [WMA] (2013). WMA declaration of Helsinki - Ethical principles for medical research involving human subjects, accessed 25 September 2024 at https://www​.wma​.net​/ policies​-post ​/wma​-declaration​-of​-helsinki​-ethical​-principles​-for​-medical​-research​-involving​-human​ -subjects/.

16. Ethical issues in participatory research with grieving children Miriam Sitter

INTRODUCTION When Grandma and the children go home they talked about Grandad for a long time, until the moon came up and it was time for bed. (Walter Smith, 2007, p.32)

These are the words that end the book Grandad’s Ashes (Smith, 2007), which, according to the blurb, is aimed at children aged four to eight and parents who should read it ‘as a way of broaching issues surrounding loss or bereavement.’ While many books explicitly aimed at grieving children try to bring them closer to the circumstances surrounding the death of a loved one based on a reference to reality, the book Grandad’s Ashes uses this reference to reality (the death of a grandad) in order to exaggerate it fictionally with ‘gentle humour’ (see the quote above). The children and their grandmother make several attempts to scatter the grandfather’s ashes in places that were his favourite places during his lifetime. As this was their grandfather’s wish before he died, his three grandchildren are trying to fulfil it. They have adventurous experiences, some of which are so full of fantasy that they are unlikely ever to occur in reality. For example, the grandfather’s urn is accidentally emptied during a hot air balloon ride, and his ashes are scattered over all the favourite places he had previously visited. At the end of these experiences, they finally go home and ‘talked about Grandad for a long time, until the moon came up and it was time for bed.’ Regardless of whether such children’s books are emphatically fictionalised (see Kerr, 2007) or offer a close narrative based on significantly more real, potentially possible events related to dying, death, and grief (see Mason, 2020; Clark & Lemp, 2023), both narratives ultimately have a certain logic:1 They are meant to explain, but most importantly, to offer a solution for dealing with losses, which frequently conveys transcendental hope (cf. Sitter, 2021a). Many books for grieving children, therefore, often work with imaginations that present celestial formations, such as heaven, an angel (Feldman & Rastvorova, 2022), a star (see Carvalho, 2018) or a cloud, as a positively occupied form and place of the afterlife, and thus as a ‘space for maintaining bonds with the dead’ (Johnsson & Walter, 2017, p.407).2 In addition to explanation and consolation, children’s bereavement books, therefore, often provide a kind of double fictional experience: on the one hand, in and with the fictional story of the book, and on the other, with the celestial imagination that can provide an ongoing connection with the deceased in the sense of a continuing bond. Children’s bereavement books help young and adult caregivers explain the events surrounding dying, death, and bereavement in a child-friendly way. These books are particularly useful when adults find it difficult to tell children the truth about death, which can be very tragic (see also Chapters 6 & 35 in this volume). One of these situations is often the suicide of a family member. When it comes to suicide, informing children about the death and cause of death can be a difficult task for adults. But it is important to 221

222  Handbook of sensitive research in the social sciences do so immediately, honestly, and without using euphemisms or falsehoods. Explaining suicide to children can be challenging due to its confusing nature, as described by Cerel et al. (2008). Parents may struggle to understand it themselves, making it even more difficult to explain to a child. The inherent challenges revolve around the question of how to explain to a child in a realistic and ‘child-friendly’ way, that is, beyond burdens and impositions that their father shot himself the day before yesterday or that their teenage sister voluntarily lay down on the train tracks. Suicidal death, therefore, seems to be more than just death in its biologically reductionist form when it comes to revealing and explaining to children the background and reasons for the chosen suicide. Pedagogical interventions to help children learn and experience what a healthy life is, what happiness and contentment are, where to be careful and what not to do present themselves in a rather contradictory and explanatory framework when explaining suicide. Providing childlike and truthful arguments for the suicidal behaviour of a relative is difficult to achieve; undoubtedly, this is also due to being emotionally affected and the acutely changing, usually decreasing emotional accessibility of the adult family members (cf. Lohan & Murphy, 2002), whose grieving process after a suicide can have unique characteristics (cf. Jordan, 2001). Above all, however, conversations about this form of death reality are so difficult for adults because they call into question the sensitive norms of a childhood worth protecting (cf. Sitter, 2019a; Sitter, 2024). This touches on an aspect that also applies in a very similar way to the fact that children with a progressive illness have to die early. As trusting and sincere as the confrontation with the bitter, unacceptable reality of the early death of a child (often in children’s hospices) may be, it is—according to my thesis—difficult for those affected to detach themselves from the desirable normative experience of an intact and happy childhood (cf. Sitter, 2019a). The relationship between death and childhood thus becomes complicated when children are robbed of their carefree childhood through illness and then have to die with all their young life's energy in such a contradictory way. As a result, the fundamental goal of grief counselling, namely to communicate openly with children about the fatal event in the family, is also partially made impossible by the act of suicide. After all, suicide is (and remains) ‘a confusing death’ (Cerel et al., 2008, p.39); talking to children about this is accompanied by the fear that the speaker is doing something fundamentally wrong. There is also, potentially, a guilty conscience about raising the subject and an idealised responsibility to protect children from such a difficult discussion in order to avoid negative reactions. However, part of the discursive canon and knowledge is now that it is important to provide children who have lost a close and significant caregiver with all the necessary information about dying and death and its consequences (Worden, 1996; Abrams, 1999; Schuurman, 2000), and to give them the opportunity to understand and say goodbye (Rolls, 2004). The difficulties and challenges described here (not only but certainly especially in the case of suicidal experiences) emphasise the importance of participatory research with grieving children. This form of research could not only give grieving children the opportunity to express their issues, concerns, questions and needs but could also open up a broader space to better understand the nature and (inter-) generational interconnectedness of children’s grief and to involve children more strongly in the discourse of health promotion. To this end, this chapter examines a number of ethical aspects but fewer specifically methodological ones. This is because participatory research with grieving children raises the question of how

Ethical issues in participatory research with grieving children  223 intergenerational care and power relationships must be reflected upon in order to constitutively include grieving children as ‘privileged subjects of knowledge’ (Bergold, 2013, p.1, own translation) in the entire research process—without forgetting that this kind of research with grieving children ‘intrudes into a deeply personal experience’ (Milne & Lloyd, 2009, p.222). In order to shed light on these ethical issues, in this chapter I first discuss some of the research grammar of participatory research.

SOME BASICS ABOUT PARTICIPATORY RESEARCH AND ITS LINKS TO CHILDHOOD STUDIES The participatory research approach has been and is still being extensively tested and critically evaluated in empirical practice. Participatory approaches have become particularly established in the field of research with children. It should be clear by now that it is methodologically possible and ethically responsible to involve children in research that affects them (Groundwater-Smith et al., 2015). Vulnerable and disadvantaged groups of children are also repeatedly targeted to encourage their voluntary participation as co-researchers (cf. Eßer & Sitter, 2018; Sitter, 2019b) so that they can voice their concerns and needs and exert their influence (cf. O’Brien & Dadswell, 2020). Such participatory research can certainly be understood as a practice of solidarity (Sitter, 2021b), in that academic researchers are committed to the empirical participation of young people as co-researchers, who would otherwise never have the opportunity to communicate and express through research the challenges and needs they experience in their everyday lives. That is why it is so important that future research should be, in the words of Alderson and Morrow (2017, p.3), ‘deliberately and unequivocally inclusive of children with disabilities.’ Including children with disabilities, finding ways to promote their full participation is important because it is their right, and because the findings can potentially be different in cases when they are included (p.2).

The term participatory research is a generic term for research approaches that ‘stand in the tradition of action research and explore and influence social reality in partnership’ (von Unger, 2014, p.13, own translation). In the 1940s, Kurt Lewin (1946), who is a central figure in coining the term action research, argued for closer interaction between science and practice in the sense of partnership-based research. This partnership approach to research has also had an impact on childhood research. By involving children in the research process, ‘children’s views can be interpreted through child-centered outlooks, instead of solely through adults’ views of their experiences, as has largely been the norm’ (Montreuil et al., 2021, p.1). According to Montreuil et al. (2021, p.1), participatory research is an ‘umbrella term that covers both the collection of data with children and children’s participation in making decisions related to the research process.’ There is no doubt this ‘empowering’ research approach proves to be an opportunity to transform children’s perspectives from mere ‘research subjects to active partners’ (Montreuil et al., 2021, p.1). This perspective on active partners is by no means new. Childhood studies have long been committed to recognising children as participants in research. In the context of the discussed term and concept of ‘agency,’ children should be understood as active social

224  Handbook of sensitive research in the social sciences persons in their life contexts. For example, Prout and James (1990, p.8) formulated the following paradigmatic guiding principle back in the 1990s: Children are and must be seen as active in the construction and determination of their own social lives, the lives of those around them and of the societies in which they live. Children are not just the passive subjects of social structures and processes.

However, Prout and James’ dichotomy between active and passive must be questioned for a research process with children. On the one hand, the dichotomy reproduces the contrast between the actions of children and those of adults. On the other hand, focusing on activity, the flip side of which is passivity, implies a dualistic understanding of social reality: here, the (potentially) free individuals and, there, the structures that suppress them (cf. Eßer & Sitter, 2018). As Alderson and Morrow (2017, p.101) say, actors are always both: they are ‘enabled and constrained by social structures and conditions not of their own choosing, which makes their agency so morally complex and often difficult.’ These complexities and difficulties make it necessary to look at agency from a different social theoretical perspective and to understand it increasingly as something relational that children and adults have to create together. For childhood research, this means that children do not simply ‘have’ agency, but that agency emerges in different social relations in which adults can also be involved (cf. Eßer & Sitter, 2018). A central question, therefore, is how children can be given agency in childhood research when they are so often powerless due to the dominant power relations in an adult-centred society (cf. Tisdall & Punch, 2012). The advantage of relational theories is that other questions can be asked without reproducing a dichotomy of action and structure in the Giddens (1997 [1998]) sense. This automatically raises questions of research ethics for research with children. For the ethical question of responsible actions in the context of the research process, this means that actions themselves can no longer be clearly attributed to individual acting subjects. As Stith and Roth (2006), for example, point out with reference to Austin (1962) and Levinas (1998), it can be argued that social actions are only conceivable as a collective process (cf. Eßer & Sitter, 2018). Adults and children, therefore, establish a network within the framework of participatory research, in which they (should) necessarily assume shared responsibility for the process.

WHAT PARTICIPATORY RESEARCH WITH CHILDREN MEANS IN TERMS OF SHARED RESPONSIBILITY Shared responsibility does not mean exclusively that children are regarded as research participants in the same way as adults. Rather, the focus is now on a basic attitude from which ‘child-centred’ methods (must) emerge, which meet the specific needs of children in a particular way (see Maguire, 2005; Punch, 2002). Relevant discussions within childhood studies can also be used in this regard. Christensen and Prout (2002) developed a much-discussed and convincing proposal in this context. From their perspective, they distinguish between four approaches to children in research (cf. Christensen and Prout, 2002, pp.480ff; cf. Eßer & Sitter, 2018, para.12): First, if children are seen as objects of research, they are not assumed to have the capacity to understand and consent to the idea of research. Second, participant-centred or child-centred approaches differ from this; these approaches fundamentally attribute

Ethical issues in participatory research with grieving children  225 to children the ability to co-determine, but only subject to their level of development. The research design is, therefore, structured according to children’s (in)competencies. Third, when children are seen as social actors, the distinction between adults and children is not taken for granted; rather, research should be orientated towards the specific needs of the people involved and the research question. Fourth, they distinguish a participatory approach, in which children are co-researchers. This is based on the assumption that children must be actively involved in the research process because they have a right to be involved in processes that affect them within the framework of children’s rights (cf. Sitter, 2019b). Aspects three and four, in particular, make it clear that an understanding of research is proposed here with which the relationship between adult researchers and children as co-researchers can be normatively assessed (cf. Eßer & Sitter, 2018). ‘Ethical symmetry,’ as called for by Christensen and Prout (2002) from this perspective, implies the suggestion that a research design should deal with generational differences in such a reflexive way that children are not disadvantaged by their social status. Ethical symmetry, especially under conditions of social asymmetry, is a general principle by which research must be guided: By [ethical symmetry; the author M. S.] we mean that the researcher takes as his or her starting point the view that the ethical relationship between researcher and informant is the same whether he or she conducts research with adults or with children (p.482).

This core idea, which has been echoed by other researchers, is that adult researchers should try to approach children in a ‘less adult’ way (cf. Eßer & Sitter, 2018). Horgan (2017), for example, formulated such an approach particularly for participatory research projects, whose research agenda requires a generational hierarchy that is as flat as possible. However, this ‘least-adult approach’ is also not very productive in practical research terms, especially as it tends to ignore the generational asymmetry that still exists, rather than using it productively. It requires—as Bauman (1993) already formulated it in his analyses of the present—a vicarious assumption of responsibility for others. At the heart of this assumption of responsibility is the principle of dialogue. This recognises commonalities as well as differences. For the ‘least-adult approach’, Michael Wyness (2013) offers a rather convincing suggestion. Instead of ignoring generational differences, he argues for a reflexive approach to them through an interdependent and intergenerational perspective. In this respect, Wyness (2013, p.430) ‘brings adults back into the analysis as partners, collaborators and actors who play a diverse range of roles within participatory contexts.’ Wyness is clearly concerned with collaborative research activity that neither seeks to maximise the autonomy of the children involved nor marginalises the adult perspective. In this respect, research activity must be measured by how effectively it represents children’s interests, because ‘participation and voice cannot be fully understood in all its complexities unless we tease out the nature of relations between children and adults’ (Wyness, 2013, p.440). With this perspective, Wyness criticises the common stage models that are widely used in the discussion of participatory research (see Wright, 2013). In contrast, childhood research often refers to Roger Hart’s (1992, p.8) ‘ladder of participation.’ Hart distinguishes eight levels of participation, ranging from the lowest level of heteronomy through intermediate levels of participation to self-determination and self-management as the two highest levels (Eßer & Sitter, 2018). It is precisely here that the dichotomy between children and adults outlined at the beginning of this chapter is invoked again, which at the same time leads to participation

226  Handbook of sensitive research in the social sciences being understood as something substantial that leads to autonomous action. However, according to Wyness (2013), this agency can only really develop in places where adults are either not present or where they take a back seat. Wyness, therefore, argues for an interdependent and intergenerational perspective. According to this perspective, the involvement of children ‘only’ in the sense of the middle level of participation according to Hart (1992) does not necessarily have to be worse than a completely self-managed project. Depending on the context of the research, adults and children, with their respective expertise, could ultimately achieve better results together than a self-determined group could achieve alone. This highlights the importance of a shared responsibility that is characterised—beyond a paternalistic manner—by a reflexive approach to generational differences. This approach is not based on the negation of these differences, nor does it simply perpetuate them in order to do justice to the ethically founded ideal of intergenerational dialogue (cf. Eßer & Sitter, 2018). And this brings us back to ethical symmetry as the basis for participatory research with children—especially with grieving children.

‘ETHICAL SYMMETRY’ IN PARTICIPATORY RESEARCH WITH GRIEVING CHILDREN Understanding ethical symmetry as a sensitive research principle is particularly well suited to participatory research with grieving children. Because, as explained at the beginning, grieving children are particularly affected by the decisions adults make about them. These decisions are usually the result of a caring relationship. Bereavement research and practice have already gathered a wealth of experience in this area and a basic knowledge of (developmental) psychology and (social) pedagogy, with new and growing international study results (for instance, Vaughan-Cole, 2005; Monroe & Kraus, 2010; Panagiotaki et al., 2018). Accordingly, bereavement counselling can undoubtedly draw on empirical knowledge for its very often civic and multi-professional practice (cf. Sitter 2022a), which underlines the relevance of spaces created for grieving children, the importance of bereavement groups, and supports the use of rituals, creative offers of help, solution-orientated conversations, and so on, as practised here. However, as far as I can ascertain, only a few findings have been made from the perspective of the grieving children themselves (cf. Lytje et al., 2022). This focus on perspectives in no way refers to the well-considered methodological plans to (only) explore children’s perspectives, which is the focus of several studies (in Højholt 2012; however, not in relation to children’s grief). Even such studies that focus on children’s perspectives do not necessarily address children’s own genuine issues and concerns. Rather, the word ‘perspective’ refers to considering what it might mean for grieving children to engage in research on a topic related to grief in general, but also one related to suicide in particular, with all their experiences, made and unmade, feelings (including those of others), needs, and unanswered questions. What, then, is the value of research in which grieving children can act as co-researchers with their own personal lifeworld perspectives, routines, and concerns? This question inevitably leads to ethical aspects. These, in turn, certainly touch on formal methodological considerations, but research ethics extend far beyond these (see also Chapters

Ethical issues in participatory research with grieving children  227 15, 17 & 18). On the contrary, research with children requires constant reflection, from which a number of other implications can be drawn. Children are Mourners Adult academic researchers must, therefore, not only apply the same principles to research with children as they do to research with adults, but also apply them decisively to the specific social situation of grieving children. This means acknowledging and reflecting on the understanding of grieving children as children, but without constructing them as ignorant beings in need of strong protection. The difference between children and adults must, hence, be understood not as biologically given, but rather as socially and situationally produced. Participatory research, therefore, considers children as mourners with all the stubbornness that characterises them as young people who have experienced loss. This research is confronted with the same questions and challenges as research with adults as mourners. It is not, thus, a ‘special kind of research’ that differs from research with adult mourners because of the particular stage of development and existential experiences of grieving children. In terms of ethical symmetry, participatory research must open up the possibility of involving grieving children not as objects but as subjects in the processing of topics and questions that are important to them and based on their experiences of grief. Reconstructing these experiences of grief in qualitative and child-centred research designs (see Jorgenson & Sullivan, 2010; Kuhn, 2003) are undoubtedly highly relevant. In addition, however, the aim should be that their perspectives are not only the subject of the analysis but also influence the research process itself (cf. Dentith et al., 2012; McCartan et al., 2012). In line with the previously formulated understanding of ethical symmetry, this is linked to the aim of empowering both research partners—the academic researchers and the co-researchers—and enabling them to gain insight into the other world (cf. McCartan et al., 2012). This facilitation of insight is understood as an intergenerational dialogue (cf. Wyness, 2013). This makes it possible to make the different points of view of all participants fruitful for each other in the sense of an approach that does justice to a ‘polyvocality’ (Spyrou, 2011, p.162) of perspectives. Grieving children must, therefore, be involved as research participants in the topics and issues that are important to them and based on their experiences of grief. In this way, knowledge (both basic and practice-orientated) about the subject of grief can be built up together with them, which proves to be critical, formative, and transformative (cf. Sitter, 2024): critical, because the existing evidence, particularly on the significance of age in grief processes, could be considered beyond current theories and, thus, in a different way; formative, because children can influence the empirical process and its results as co-researchers; and transformative, because the results can be presented to the public together with the children in order to promote new or alternative models of thought and practice (cf. Sitter, 2024). With regard to the first aspect (critical), it shows how research ethics is always measured by the constant reflection that adult researchers have to undertake—far beyond formal methodological principles—when conducting research with grieving children. Graham et al. (2013, p.23) argue that ‘this requires ongoing attention to the assumptions, values, beliefs and practices that influence the research process and impact on children.’ Against this background, the fundamental consideration of how grieving children can be given access to a participatory research project, so that their participation results from their own interests and concerns, is already relevant. In this respect, there should not be a prefabricated questionnaire with

228  Handbook of sensitive research in the social sciences a detailed, normatively defined research concept by academic researchers, as is quite common in and through the design of project proposals (cf. Sitter, 2024). Ultimately, it would be ethically questionable if the research question, which ultimately relates to the social world of the grieving children taking part in the research, was not discussed with them. Similarly, ethical symmetry in the sense of intergenerational dialogue would not be guaranteed if adult researchers did not make an effort to capture the views and experiences of children as fundamental knowledge for a fruitful research question (see Eßer & Sitter, 2018). Yet, it is precisely this capturing that is crucial to fulfilling an ethical obligation, namely that adult researchers ‘must ensure that research maximizes benefits to children, individually and/or as a social group’ (Graham et al., 2013, p.23). A collaborative project of this kind will, therefore, have to take into account and focus on the interests of the co-researching children from the outset. In contrast to the more familiar routine of adult researchers formulating a rather abstract research question in advance, it is necessary to consider how this routine can be organised differently. In any case, the procedure must be organised in such a way that it is not assumed a priori that the children’s grief behaviour will be different and challenging because of their age. From a purely organisational sociological point of view, this assumption would not be wise either, especially since it can also be assumed that the opposite happens (cf. Sitter, 2024). This refutation and/or variance of assumptions can form the central part of participatory activities by grieving children, giving them the space to create their own research agenda based on their life experiences in order— as Thomas and O’Kane (1998, p.342) emphasise—‘to draw upon concrete events in real life, and to involve handling things rather than just “talking.”’ The important point here is that whenever grieving children also confront the decisions and behaviour of adults and wish to make these the empirical subject (of their grieving process), this is a sign that the generational difference as a reference problem affects their life-world confrontation as mourners. And whenever they do not wish to focus on this topic or refuse to take part in a research project in this regard, a social sense of function can ultimately be recognised here, which is already rich in knowledge. This openness ultimately holds an epistemic potential for generational difference in the child’s grieving process. On the Continued Relevance of Intergenerational Forbearance In all these ethically symmetrical considerations, it is important to remember that mourners are – after all – children. This means that they have the right to be involved in issues that affect them, but always with careful consideration of their capacities as children (GroundwaterSmith et al., 2015, p.4). Therefore, the first important step is to acknowledge that, despite the emphasis on the importance of involving children in empirical research on dying, death and bereavement, this is research that, as mentioned initially, ‘intrudes into a deeply personal experience’ (Milne & Lloyd, 2009, p.222). This aspect, therefore, affects the central question and consideration of whether research on such an existential topic can and should be carried out with grieving children at all, which in itself reinforces the questioning and the ‘overprotective attitude’ of adults outlined at the beginning and thus also negates the opportunity for intergenerational dialogue and shared responsibility. However, it is important to remember that these ‘caring’ assumptions, which imply a perceived ethical unacceptability, do not marginalise the voices of grieving children. Young people and their grief are the main actors in their own lives, which are about coming to terms with

Ethical issues in participatory research with grieving children  229 their loss. Therefore, as Sharpe et al. (2022, p.471; with reference to Coates & Vickerman, 2013; Vickerman & Maher, 2019) emphasise in their studies with children who have special educational needs and disabilities, ‘any such research without them is incomplete.’ Research with grieving children needs to be designed collaboratively and creatively so that ‘effective methodology and ethics go hand in hand’ (Thomas & O’Kane, 1998, p.336). A research approach must, therefore, be chosen to give children ‘control over the research process and methods which are in tune with children’s ways of seeing and relating to their world’ (p.337). This brings us back to ethical symmetry and, above all, intergenerational dialogue. After all, research that gives children control over the research process also requires academic researchers ‘to be prepared to embrace flexibility and unpredictability’ (Sharpe et al., 2022, p.471). To avoid this tension, participatory research with grieving children should be practised as a constant balancing act, which I have formulated elsewhere and more generally for collaborative research with children (Sitter, 2019b). It should prove to be a reflective one, enabling children and adults to recognise each other in their respective generational positions, in order to be able to express and exercise their perspectives and responsibilities in mutual esteem. In a participatory project, grieving children and adults would have to achieve a reflective balance between generational asymmetry and intergenerational forbearance (cf. Sitter, 2019b): the side of generational (social) asymmetry—as a fact and in relation to participatory research—involves a series of implicit differences. For example, grieving children have a completely different level of knowledge and do not have the diverse experiences that adults possess. This leads to further differences in positions, roles, tasks, and responsibilities. Moreover, this involves different expressions of interest, reactions, understanding, and attention (cf. Sitter, 2019b). As outlined above, children’s grief processes, and therefore their health, are highly dependent on the needs and decisions of adults; for example, the decision to inform the child about what has happened in order to help them come to terms with it; the decision to allow the child to visit a bereavement centre; or the need to seek support as a bereaved relative in order to take good care of themselves and the child in times of grief. When grieving children are subject to such decisions and needs of adults, this also affects their rights within a relationship which, in times of grief, is based on equality and a very unstable reciprocity within the family system. Such a relationship is often deformed in and through the individual grieving processes within the family (grief) system, not so much into a relational complement, but rather into a complicated community with some undesirable counter-effects. In order to find this balance, it is important on the one hand to recognise these differences as a matter of course—a form of recognition that does not lead to grieving children being regarded as too young for certain topics and explanations (such as on the subject of suicide) and thus being denied participation in participatory research. This will inevitably lead to intergenerational forbearance to help balance this. Practising intergenerational forbearance, on the other hand, means recognising as legitimate the different roles, responsibilities, and positions that arise from the generational asymmetry resulting from the natural status of adult researchers and co-researching children (cf. Sitter, 2019b). The fact that co-researching academic researchers and grieving children represent different dimensions must be so self-evident that each of these dimensions presupposes the other within a participatory research process in an appreciative and reciprocal manner. An intergenerational dialogue must, therefore, take place that is always based on mutual recognition as equals and others, without—in the sense of Wyness (2013)—disregarding generational difference.

230  Handbook of sensitive research in the social sciences The concept of forbearance is central here because—as an element of sophisticated ‘theoretical concepts of the history of ethics’ (Wils, 2005: see the blurb; own translation)—it can be useful for understanding generation-specific actions characterised by acceptance and thus attentiveness. Forbearance is, therefore, always required ‘in the face of exaggerated expectations of understanding’ (Wils, 2005, p.15, own translation) and thus always ‘in relation to the misunderstood other and ultimately also in relation to oneself’ (Wils, 2005, p.15, own translation). Such a perspective makes it possible to put oneself in the position of the other person and to adopt their point of view (cf. Stegbauer, 2011, p.99; own translation). And it is precisely in this way that the choices, views, reactions, and so on of children and adults can be better understood, recognised, or legitimately rejected on a generational basis. This perspective is groundbreaking for a participatory research project with grieving children, which, in the spirit of Wyness (2013), should bring adults back into the research process as collaborators and protagonists. For then, the adult-centred and ‘overprotective’ actions of adults, which are often perceived as disadvantageous, could not be seen prematurely as paternalistic. On the other hand, the meaning and significance of children’s respective decision-making spaces can be sufficiently recognised if they provide adults with intersubjective explanations of their points of view. Applied to participatory research with bereaved children who have experienced loss, perhaps even the suicide of a family member, this means that these children should first be given an intersubjective explanation of why academic researchers are initiating such a project and inviting them to participate in collaborative research. It is important that children have a free choice as to whether or not they are willing to be part of this type of research. The ‘ethical approach is to make every process throughout the study as inclusive as possible’ (Alderson & Morrow, 2017, p.59). Allowing grieving children to participate in empirical activities implies a special value in giving them the attention and participation of society as a whole because they can express in and through research the relevance of systems and settings close to their lives. However, their voices and concerns only become visible in the long term if they are processed by the children themselves. Elsewhere (Sitter 2021a, p.245), I have already pointed out that the flourishing landscape of picture books for grieving children, produced primarily by adults, does not necessarily ‘correspond to the everyday experiences of bereaved children and their subjective ideas of consolation.’ Many of the ideas of comfort in various picture books are ultimately determined by adult ideas and patterns of interpretation of what can and cannot be said. In a participatory research project, however, grieving children themselves could decide what can and should or should not be said and seen about their grief or suicide. This definition of sayable or unsayable, as well as visible or invisible, can be brought up by co-researching children within the framework of a granted and reflected ethical symmetry in the research process (cf. Eßer & Sitter, 2018) and processed in such a way that their intentions come to the fore. In terms of childhood theory, particularly pedagogy and developmental psychology, there is a particular advantage here that can be used in an insightful way in the design of children’s memorial books: artistic work (in the form of drawing, painting, modelling, building, and so on) supports children’s own exploration and processing of (past) situations, feelings, emotions, and needs. At the same time, children can develop their personalities and acquire literacy skills (cf. Sitter, 2024). All the themes and stories that children think should be included in a picture book about grief would, therefore, provide a basis for the new sayable and unsayable, and thus, for what might conceivably be changed from the perspective of grieving children.

Ethical issues in participatory research with grieving children  231 We have become accustomed to children’s bereavement books being created by adults (cf. Sitter, 2024). However, children’s choices about the (non-)visual and understandable culture of representing death-related issues can and should be rethought through participatory activities, have a fundamental de-tabooing effect, and thus become changeable. In the spirit of Tronto’s (2009 (1993)) ‘Ethics of care,’ it can be reflected in this regard that even if grieving children need the care of others in some aspects of their lives, this cannot be used as a fundamental justification for a paternalistic attitude towards children in the research process (cf. Eßer & Sitter, 2018). In particular, the fundamental question of whether grieving children are too young to deal with these existential issues in a project touches on the legitimacy of paternalistic action. After all, adults, especially parents, have to make the decision and agree to participate. However, as part of an intergenerational balance practising forbearance, it is important to consider and explain to children in an intersubjectively understandable way why adults might have reservations about such decisions. Protecting children who are physically and emotionally affected after a loss seems hardly controversial in terms of ethical obligations and children’s dignity (cf. Graham et al., 2013). However, the final decision in situations where parents feel that their child should not be involved in the research needs to be critically examined. Intergenerational forbearance therefore always means being self-referential to a certain extent, so that children as co-researchers do not become merely passive objects of a discourse that only appears to succeed in implementing children’s rights.

CONCLUSION AND FUTURE DIRECTIONS Participatory research with children faces the constant challenge of dealing with generational differences in a way that neither negates nor overemphasises them. Negation would certainly support the continuation of latent paternalistic forms of domination (cf. Qvortrup, 2015), and overemphasis would unnecessarily drive the performative tension between childhood and adulthood because intergenerational dialogues are ‘artificial.’ However, bereavement counselling for grieving children now takes place within a social framework that is largely determined by adults. What children feel, what they know and do not know about death and mourning, and what mourning means for each individual child is, therefore, both personal and a matter of social behaviour within society and its adult knowledge relations (cf. Sitter, 2024). It is, therefore, important to include children in the discourse about grief. A participatory research project with grieving children must not, as is often the case, remain temporarily artificial. This refers to the fairly common practice that children hardly benefit—at least not directly—from the results of studies in which they were involved, for example, because they rarely (can) participate in publications (also in the form of scientific presentations) or because a time-limited project, and thus, their influence ends at some point (cf. Sitter, 2024). Applied to participatory research with grieving children, this would mean linking the results of their project themes, events, analyses and so on to the discourse on children’s health promotion and making them visible there. After all, all the actions and challenges presented so far in dealing with grief are always about the health of mourners, and even more so about the health of grieving children in the future. Participatory health research as a research approach (see Hartung et al., 2020) could certainly lead the way in this discursive participation with its proposals. This is because it formulates fruitful effects of research-based participation at the

232  Handbook of sensitive research in the social sciences individual, social, and societal levels. For grieving children, participatory involvement at the individual micro level would per se lead to a gain in competence and a strengthening of their self-efficacy. The organisational level—understood as the meso level—involves reflection with children on the development and possible improvement of grief issues through special initiatives or exchanges with cooperation networks and so on. In turn, social effects at the macro level could be practised and achieved for and with grieving children by influencing structural (framework) conditions. In the long run, involving grieving children as co-researchers in discursive health promotion means creating a deliberative, ‘small-scale’ citizen participation in which children take their findings to other places and tell, report, present, and explain what they have found out about loss and grief and how to deal with it (cf. Sitter, 2024). Participatory research with bereaved children, therefore, contributes to health promotion when children can pursue their issues, questions, and needs in a self-determined and independent way. Grieving children can deal with their perceptions as co-researchers to understand that their childhood, their sensations, their feelings and needs, and all their mourning actions are always linked to the actions of significant others. With this basic assumption, participatory research that seeks to achieve a balance in terms of generational asymmetry and intergenerational forbearance is characterised by a child’s (conscious) awareness of everything that happens to them as grieving children in the adult world. This ethical research is, therefore, also characterised by strengthening the well-being and selfconfidence of grieving children. From the point of view of childhood theory, this research implies the potential for children to better understand the (inter)generational nature of their experiences of grief and to be able to assert their rights and claims to information, independence, individuality, and the expansion of their scope of action at any time and in any place, especially discursively, if they so wish.

NOTES 1. Of course, fictional books also have a real-life reference point, for example, by using the events of dying and death as a starting point to tell a story about dealing with loss and grief. It is not uncommon for a very young reading audience to see the deceased and mourners depicted as animals (such as in Feldman & Rastvorova, 2022; Brough & Kariyawasam, 2023). 2. Jonsson and Walter refer to a phenomenon that is being discussed in the field of thanato(socio) logical research as continuing bonds (Klass et al., 1996). Continuing bonds refer to the varied ways in which the living continue to feel connected to significant others who have died. Continuing bonds are practised in such a way that the living continue to feel connected to significant deceased persons. For example, deceased people are remembered in connection with objects that the person used during their lifetime. These include items of clothing and furniture, a pair of glasses, or sometimes even a lock of hair. In this case, this ‘souvenir’ takes on a new meaning as a result of the death.

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17. Ethical guidelines for interview research with parents of underage children in the context of migration Eveliina Heino and Maija Jäppinen

INTRODUCTION In the last decade, there has been an increase in formal ethical regulation in the social sciences. Many universities and peer-reviewed journals require official approval for studies by an ethical committee, especially if the research topic is understood to involve sensitive issues and/or vulnerable groups (Liamputtong, 2007; see also Chapters 15, 16 & 18 in this volume). Although the formal regulation of ethics in research is justified, it does not by itself guarantee that ethical research processes are followed. According to our experiences, ethical issues arise in various concrete, often unpredictable situations (Kara et al., 2023). Thus, researchers need to continuously reflect on ethical questions during different stages of their research. In this chapter, we discuss ethical questions in interview research with parents of underage children in the context of migration. By interview research, we mean producing data in the form of individual and/or group discussions between researchers and research participants in which the researcher guides interactions with the aim of acquiring an in-depth understanding of social phenomena (see Liamputtong, 2020; Serry & Liamputtong, 2022). We lean on the definition of Clark-Kazak (2021) and use the concept of parents of underage children in the context of migration, rather than migrant parents, to emphasise migration as a structural phenomenon instead of a feature of individuals. It is also noteworthy that migration touches upon many families in different ways, even if all family members have not migrated themselves. For example, this is the case when only one of the parents has migrated from one country to another or when children are born in a different country from that of their parents. Here, we deliberately do not focus on research with children and concentrate only on that with parents, since the topic of research with children in the context of migration requires specific attention, and both topics cannot be discussed thoroughly here. Previous studies on ethical questions in the context of migration have mainly focused on forced migration (see, for example, Clark-Kazak, 2021; Deps et al., 2022), and migration in a wider context, especially concerning families, has received less attention. Here, we include different situations of migration. The reason for this is that voluntary migration can be a continuum of experience, and the dichotomy between voluntary and involuntary movement has been criticised in some current migration studies (for instance, in Erdal & Oeppen, 2017; Crawley & Skleparis, 2018). In addition, in family studies, the focus is often on some specific everyday situations or phenomena, such as parents’ experiences with social services (Heino, 2018), everyday life with a disabled child (Heino & Lillrank, 2021) or the influence of COVID-19 on family life (Heino et al., 2023). Thus, the reasons for migration are not a

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Ethical guidelines for interview research with parents of underage children  237 defining factor in these studies, and parents with different migration backgrounds are often included in the same study. The theme of this chapter is current, since the World Migration Report estimated the number of international migrants to be almost 281 million globally in 2020 (International Organization of Migration, 2022). People who have experienced migratory processes have diverse experiences due to various individual and contextual factors, but there are some common aspects that have arisen in different studies that we address in this chapter. Generic ethical rules, such as the European Code of Conduct for Research Integrity (All European Academies, 2023) and the Guidelines of the Finnish Advisory Board on Research Integrity (TENK, 2019), provide a good starting point for ethical considerations. In addition, different disciplines and professions have constructed specific ethical principles that should be integrated into professional practice as well as into research, such as the Global Social Work Statement of Ethical Principles (International Federation of Social Workers, 2018). It is noteworthy that the International Association for the Study of Forced Migration (IASFM) has also formulated a code of ethics to be used for reflection in research on forced migration (IASFM, 2021). What combines different ethical guidelines is that they all identify important ethical principles, such as respect for the autonomy of participants, including voluntary participation, informed consent, anonymity, and confidentiality. Also highlighted in all guidelines is the acknowledgement of the potential for harm to participants and the responsibility to avoid it, as well as ethically representing and disseminating research findings (Liamputtong, 2007, 2020; see also Chapters 1, 8 & 18 in this volume). Guidelines are useful and can be helpful in many ways. The challenge often lies in the question of how to apply these guidelines in specific and perhaps unexpected situations. In our view, conducting research with parents in the context of migration is a sensitive issue for the following reasons. First, migration causes vulnerability because of legal precarity. It often initially entails getting temporary legal status, which means that migrants do not have social rights equal to those of the citizens of the host country. In some cases, the participants of a study can be in the middle of the process of applying for residence permits, which brings uncertainty to their everyday lives. Stress over this uncertainty often increases if the person has underage children. This is due to the legal and perceived moral obligations of being able to provide stability to the child (Heino, 2018). Second, migration can be related to painful and traumatic experiences. While we acknowledge that the experiences and situations of migration vary, and research on migrancy does not necessarily concern vulnerability, we also recognise the possible interconnections between migrancy and trauma. Especially in the cases of forced displacement, migration can be related to physical or psychological trauma in the country of origin or/and negative experiences with human traffickers (European Commission Directorate-General for Research, 2010). Moreover, there is broad research evidence that migrants are at high risk of experiencing racism in the host country, which also can cause stress and trauma (European Network Against Racism, 2016). Third, the public debate and state policies related to migration are heavily politicised in many countries. Thus, research findings can be used for different purposes, including agendas supporting racist policies and practices (Thapliyal & Baker, 2018). This means that researchers

238  Handbook of sensitive research in the social sciences need to carefully consider what discussions they participate in with their research and the ways in which they represent their results and the participants of their studies. Fourth, issues related to language and power are often present in research on migration. Multilingual researchers and research participants may not speak the same language at the same level, and interpretation may be needed (see Liamputtong, 2010, 2023). This deepens power asymmetries between researchers and research participants and influences their interactions. Meanings can be lost during interpretation, which can be challenging, especially in group interviews (Smith et al., 2008). Moreover, the processes of providing information about a study and acquiring informed consent from research participants are highly mediated by language and often contain specific vocabulary and concepts. Guiding research participants through these processes in a multilingual research setting may be a demanding task for researchers, but at the same time, it is extremely important for research ethics. Fifth, migration concerns and affects families in many ways. Although nation-states’ borders create territorial and legal barriers between family members who have migrated and those who have stayed in the country of origin, families often participate in different transnational encounters and care arrangements in their everyday lives (Hiitola et al., 2020). Also, family research touches upon the private area of everyday life, and participating in such research means sharing personal experiences with researchers. Topics related to family relations, family conflicts and parenthood are sensitive as such (Hämäläinen et al., 2015; Notko et al., 2013). In this chapter, we approach vulnerability in the context of migration as a result of structural power asymmetries that can become visible and intensify in interactions between researchers and research participants if ethical questions are not carefully considered before and during the research process. Thus, being vulnerable does not mean that a person does not have agency. Rather, it obliges researchers to think about how to decrease power asymmetries during the research process and how to promote the agency of research participants. In what follows, we discuss ethical issues through different phases of research, namely planning, implementing, and reporting results of research with parents of underage children in the context of migration. These issues arise from migration studies, which is an interdisciplinary field of research focusing on human migration from various perspectives, and family studies, which centre on close interpersonal relationships and the way that these influence individuals and are themselves influenced by norms, institutions, and societies. Our aim is to discuss ethics and to encourage further discussion of this topic. We lean on previous research on this theme as well as on our own previous and ongoing research projects.

PLANNING THE RESEARCH Defining the Research Topic and the Group of Research Participants The first step in planning research is to review previous studies on the planned topic to avoid causing harm through over-researching certain groups. Participating in research takes time, energy, and the emotional resources of the participants. Over-representation of some groups can also lead to the under-representation of other groups that should be considered (ClarkKazak, 2017). According to Zapata-Barrero and Yalaz (2020), selecting a research topic in the context of migration is an ethically demanding issue, since research cannot be separated from the political conflicts surrounding the subject. Researchers need to carefully consider how to

Ethical guidelines for interview research with parents of underage children  239 approach the topic in a way that promotes the agency of research participants. Defining the concepts to be used in a sensitive manner is of crucial importance. In the context of migration, categorisations such as ‘migrant’ and ‘person with migrant background’ are often used. When deciding on a concept, it is important to consider the power structures behind these categorisations; that is, who is defined as a migrant and when does a migrant background cease to be a relevant categorisation for a person who may have lived for years in the host country or even been born there as a child of migrant parents. We recognise that ‘migrants’ are far from homogeneous group of people. In some cases, classifications related to race and whiteness/non-whiteness are even more relevant in research than migrancy itself. In the Nordic context, conceptualising race is often found to be uneasy, and terms such as ‘immigrant’ and ‘foreigner’ have been used to avoid speaking about race (see Keskinen, 2016). The problem is that good-natured attempts to be ‘colour-blind’ leave racialised hierarchies unrecognised and may thus even deepen inequalities (Eliassi, 2017). Conducting migration research without paying attention to racialised hierarchies would leave the experiences of those persons with a migrant background who belong to racialised groups in the shadows. At the same time, researchers need to be very sensitive in how they speak about race and in the kinds of concepts they choose, particularly if they themselves hold white privilege. A good way to approach this question is to leave room for research participants’ self-identification. It is also important to avoid categorising all non-white people as ‘migrants’ based solely on their race or ethnicity, no matter how long they and their ancestors have been living in the country. This is a form of microaggression that many non-white persons encounter in their everyday lives, and scholars should be careful not to cause such experiences in their research. In some cases, definitions other than those based on migrancy and race can be useful, such as shifting the focus from migration to the languages used or, for example, to the interaction between parents and officials, including in the study parents who do not speak an official language as their mother tongue. It is also possible to concentrate on a particular language group or on multilingual persons, depending on the research focus. As a whole, the most relevant guideline for conceptual considerations is that the terms used should be respectful and that the research participants can identify with them, at least on some level. It is noteworthy that the categories of migrancy and race intersect with several other categories, such as gender, ability, social class, and legal status. Exploring these intersections can provide a wider understanding of the phenomena under study rather than relying only on a migration-related category as such (Daftary, 2018). Although making proper definitions of the research population based on people’s backgrounds and/or social location, including a combination of factors—such as gender, race, ability, and social class—can be a difficult process, it is necessary for bringing forward social inequalities and discriminatory processes that are related to social positions (Jacobs, 2018). In our own research, while studying foreign language-speaking parents’ experiences during the COVID-19 pandemic (Heino & Kara, 2023; Heino et al., 2023) and child welfare supervisors’ perspectives when working with foreign language-speaking parents (Heino & Jäppinen, 2023), we asked not only what specific questions these particular families faced but also what common issues they had with majority-population families, consciously aiming not to automatically reproduce the paradigm of difference (see also Dahinden, 2016). This kind of approach brought to light both issues that were common for families with children in general and those that related specifically to language, migration and the practices of social services.

240  Handbook of sensitive research in the social sciences Another useful approach is to ask research participants which concepts of themselves they prefer to use. Asking this can provoke interesting discussions, bring forth the stigmatisation attached to some concepts, and even lead to a change of concept to a more useful one during the study ( Heino, 2018, for instance). In family studies, the definition of a family plays a crucial role. Often, a researcher defines family by some official criteria, such as that it consists of parents and their underaged children living in one household. It is, however, noteworthy that research participants’ definitions of the family can differ from the official one and may include people and a set of social practices that the researcher had not considered beforehand (Dermott & Fowler, 2020). In the context of migration, it is common that a family and other close relations are transnational and can extend to different countries (Jäppinen et al., 2023). The question of the definition of a family is closely related to methodological nationalism, which leads to the assumption that a national state is the natural form of the everyday lives of individuals and families, limiting territorial and national boundaries (Dahinden, 2016; Wimmer & Schiller, 2003). This does not necessarily reflect the reality of families who participate in migration-related research. Thus, researchers should be open and sensitive to how research participants self-define their families. At the same time, it can increase understanding of the practices of families in the context of migration. In family studies, an important issue concerns clearly defining who the actual research participants are. Sometimes, the results of the studies are presented as representing the family’s perspective, although only both parents or individual parents have participated in the study. It is noteworthy that family relations and phenomena surrounding the family can be perceived differently by different family members (Pösö, 2008) and that generalisations about a common family perspective are often not accurate. Thus, when the family perspective is studied by interviewing parents, the focus will be on the parents’ perspectives and their experiences. Studying multiple family members in the same study requires methodological and ethical considerations, especially concerning confidentiality, if during the research process participants share information that should not be shared with other family members or if the researcher acquires information that threatens the best interest of a child. An ethically useful criterion for family research, especially if it involves children, is that the family situation is relatively stable (Notko et al., 2013). Reflecting Researchers’ Positionality Reflecting on researchers’ positionality is important during different stages of research, starting from the planning stage (see Chapter 1). Asymmetric power relationships between researchers and research participants often arise from the vulnerability of the participants that we mentioned earlier, including their legal precarity, possible traumatic experiences, position as a minority and linguistic barriers (Deps et al., 2022). In addition, researchers have more power, since they are the ones guiding the research setting, data collection, and interpretation of the data. It is noteworthy that research, including protocols, financial instruments, and implementation, is usually controlled by individuals who do not have experience of migration themselves. This is something that has been discussed by scholars (namely Espiritu, 2017; ), and individuals from migrant communities have been included in research in many ways. In our own research, we have, for example, invited people with experience of migrancy to participate as co-researchers in planning research, collecting data, and in co-writing publications.

Ethical guidelines for interview research with parents of underage children  241 The idea was to create a more equal exchange of ideas and for the migrants to benefit from being involved in a research project. The benefits of so-called ‘insider’ research, meaning that the researcher has similar experiences to those of the participants they are studying, include the assumption that the researcher has a nuanced perspective that helps in their interpretation of the studied subject; that there is an equalised relationship between the researcher and the participants; that there is easy access to the research field; and that insight can be gained into the experiences of the participants, which can help during interaction with them (Chavez, 2008; Liamputtong, 2010). However, a shared background can often cover up differences between the researcher and the research participants in relation, for example, to age, gender, and values (Heino, 2018). According to Bell et al. (2020), ethical concerns can arise from the role conflicts of researchers if they are active participants in the migrant community. It is also noteworthy that regardless of the similar background, the situation of an interview has an asymmetric nature because the researcher is the one who guides the conversation. In addition, as Pittaway et al. (2010) pointed out, ownership of the research process and copyrights often stays with the researcher, regardless of their attempts towards inclusivity. This does not mean that inclusive approaches and insider research should not be used but rather that they should be carefully considered and planned. Acknowledging these asymmetric relations means that researchers must ask themselves what biases they have regarding the research topic and the participants and how their positionalities, such as age, gender, and socio-economic situation, may affect their interpretations of the research subject and relations with the research participants. This kind of self-reflection is crucial in any type of research because it gives researchers the opportunity to identify their own positions during the research process, from research design to creating representations from the data (Manohar et al., 2020). While acknowledging the questions of participation and the power asymmetries related to it, it is also important to fight for diversity and representation inside academia. Non-white people and people with experiences of migrancy should not be seen only as research participants and co-researchers but should have the opportunity to become research leaders and scholars, planning and conducting research on migration and multiple other topics. It is crucial that research groups working on migration-related issues are not all white and that different backgrounds and experiences of migrancy are represented. Creating a Practical Plan For Encountering Challenging Feelings and Situations During Data Production Finally, it is necessary to create a practical plan for encountering challenging feelings and situations during data production beforehand. When studying sensitive topics, it is important to consider which questions are necessary to ask participants and which questions are not. It is often hard to predict what kind of feelings, such as memories of the past, may arise among research participants. In some cases, questions that will be asked during interviews or themes that will be discussed can be delivered to participants beforehand to minimise any ambiguous aspects. This can help decrease the power asymmetry between researchers and research participants, as it would make the course of the interview predictable to the research participants, not just to the researchers. On the other hand, participants cannot be compelled to use their time and resources to prepare for the interview or to give rehearsed answers. A good practice

242  Handbook of sensitive research in the social sciences is often to ask participants before the interview if they would like to know about the themes that will be discussed. Studying families requires skills to react to expressions of difficult feelings (Pösö, 2008). Showing empathy and actively listening to what participants are saying are often in place as part of the study, but it is also important to ask participants if they would like to stop participation in research if their participation is provoking difficult emotions and observe if they are showing signs of distress. If a research participant wants to continue the interview regardless of the distress, it is good practice to discuss everyday topics after finishing the interview to create a sort of transfer from the sensitive topic to the current moment, if doing so seems appropriate. In research on sensitive topics, negative and positive feelings often go hand in hand, meaning that talking about one’s own experiences can be distressing. At its best, participation in research can be empowering, as it can provide a chance to share one’s own experiences in a safe environment (Peled & Leichtentritt, 2002). It is also essential to consider how researchers can reflect on their own difficult feelings that may arise during research. Researchers are commonly advised to refrain from making moral judgements during interviews, even when the opinions of a participant challenge the researcher’s own beliefs, because it is important that the participant feels safe during the interview and that the researcher’s actions do not distort the data (Gabb, 2010; Knott et al., 2022). Good ways to reflect on difficult feelings include writing a journal, discussing feelings with peers, and seeking supervision and guidance from more experienced colleagues (Gorin et al., 2008). At its best, sharing challenging feelings and moments during research can help to create a set of consensual ethical guidelines for future research. It is noteworthy that interviewing individuals in vulnerable situations can mean that researchers need to guide participants towards further help and services (Gorin et al., 2008). In our own studies, participants have asked for help in terms of understanding official documents, such as those containing medical diagnoses or the decisions of social services or schools, giving us detailed private information. As licenced social workers and scholars in the field of social services, we have provided guidance and service information when needed during interviews since withholding such support seemed inappropriate and insulting. However, it is important not to mislead participants about the role of research in terms of providing additional support in the future. A useful practice is to carry the contact information of organisations that can provide further support and to guide participants to them if needed. Lastly, when studying sensitive topics, it is important to acknowledge that possibilities for interventions are always present (Hämäläinen, 2013). This means that researchers need to consider how to act in situations when something serious is revealed. Sometimes, confidentiality between research respondents and researchers can be broken, such as in cases when the researcher finds out that an underage child is in danger. In such cases, interventions should be made in the name of the child’s best interests and with the help of authorities such as social workers and the police (Notko et al., 2013). Different countries have criminal and national security legislation that compels all residents to report to the authorities any cases of criminal activity that they identify. An example of such legislation is the criminal law in Finland (563/1998), which describes the obligation to report different kinds of felonies under the threat of penalty. Researchers must be aware of the ethical risks that information gathering can bring. Again, in such cases, we encourage them to discuss and reflect on issues like this with their colleagues even before data collection starts so that they will know who to approach if such situations occur.

Ethical guidelines for interview research with parents of underage children  243

ENTERING THE FIELD Access to the Field and the Role of Gatekeepers It is noteworthy that in migration research, as well as in family research, participants who are in the most vulnerable situations are hard to reach (Heino et al., 2023; Zapata-Barrero & Yalaz, 2020). This is especially the case when conducting research in institutional settings or within the service system, where access to the field may become a multi-stage process that includes negotiations and requires constant ethical reflexivity in situations that are often unpredictable. According to our experience, getting access to the field is more an ongoing process than something that ‘happens before’ the actual research (Kara et al., 2023). Sometimes, participants can be reached only through gatekeepers who control, but may also enable access to, certain groups. Gatekeepers can be, for example, health and social care agencies, educational institutions, or non-governmental organisations working with people in the context of migration. Sometimes, using these gatekeepers is necessary because the desired group of participants would be difficult to reach without their help, and sometimes because the research focuses on the clients of certain institutions, such as social service agencies. In practice, working with gatekeepers means that before participants can give their consent, gatekeepers will provide information about the research to possible participants and pre-select participants by deciding whom they tell about the research. Our own experiences of conducting family research have identified certain pitfalls related to gatekeepers. First, gatekeepers may take a strong role in protecting their clients and choose the ‘right’ participants very carefully (Kara et al. 2023; see also Aaltonen & Kivijärvi, 2019). Second, in our experience, women are usually more eager to take part in research concerning family issues, and practitioners may feel that it is easier to suggest their participation. If not carefully informed, gatekeepers can increase bias by recruiting mainly or only women as research participants, and the research sampling may thus change beyond the researcher’s intention. As a result, mothers’ perspectives can dominate the research findings. Obtaining Informed and Voluntary Consent Informed and voluntary consent means that research participants understand the aims and processes of the research as well as its potential risks and the benefits of participation for themselves. While anticipating the risks is challenging in many research contexts, this gains specific emphasis in migration research because of the politicisation of migration, as we discussed above. Knott et al. (2022) divided potential forms of harm into political, economic, physical, psychological, professional, and reputational harm. The risk of harm should also be considered from the point of view of possible gatekeepers. It is important to highlight to potential research participants that their clientship with a certain organisation will not be affected by their participation in the research, that the information obtained by the researcher will not be passed on to this organisation, and that participation will not bring direct material, legal, or other benefits (Clark Kazak, 2021; Zapata-Barrero & Yalaz, 2020). Bay-Cheng (2009) stated that researchers should strive to incorporate meaningful benefits to the participants in research procedures. Usually, benefits can be classified into two categories, namely those to individual participants and those to science and society. According to Dyregrov et al. (2000), the refugee parents whose experiences of participation in research

244  Handbook of sensitive research in the social sciences were being analysed recognised as benefits of participation the possibility to rethink and analyse their own situation and to provide useful information to the researchers and host society. They hoped that this information would be used in improving practices and policies in the future. These are benefits that were also recognised in our own studies ( Heino, 2018). However, researchers can be creative in this regard, and this is also a subject that should be studied more to disseminate good practice. While planning documents containing information about research and consent forms, it is important to ensure that all necessary details about the research are clearly presented in a language that participants understand well. Here, researchers should clearly state how and to what extent participants’ privacy and confidentiality will be protected and maintained. Moreover, they need to highlight participants’ right to withdraw consent during or after data collection (Murphy et al., 2012). According to our own experiences, it is useful to consult native-language speakers who have a linguistic and culturally specific understanding of research and ethics. Clark-Kazak (2021) and Deps et al. (2022) encouraged researchers to carefully consider whether signed forms are necessary or if audiotaped oral consent would be sufficient, since some displaced people can have negative experiences with authorities and be suspicious about signing official forms. Such forms may also unnecessarily attach research to other official processes that participants may be involved in. The same goes for considering whether collecting participants’ names and other personal details is necessary and, if so, which pieces of information are really needed (Knott et al., 2022). Often, to describe the participants in a study on a general level in scientific publications, it is necessary to collect details such as their age, year of migration, country of origin, language, place of residence, and education, but this can be done without attaching such information to individual participants, which should also be openly explained to them. Since most interviews are audio recorded, it is crucial to gain informed consent to use a recording device before an interview begins. There is a need here for openness about why the interview is being recorded, who will have access to the recording, and how and where the recording will be stored. Also, researchers should have a backup plan in cases where participants decline recording.

COLLECTING DATA Interview Methods Qualitative interviews are a widely used form of qualitative data production employed by researchers across the social sciences since the approach allows research participants to explain their views in their own words (Liamputtong, 2020). This type of data production is guided by researchers. The form of interviews, meaning how structured they are, depends on the aims of the research and the purpose of the interviews. In semi-structured interviews, which are a common approach, open questions are organised around particular topics to be discussed (Serry & Liamputtong, 2022). Having some form of structure for the themes under discussion helps researchers to remember the issues that should be covered. Nevertheless, participants may sometimes raise issues outside the interview guide or concentrate on one theme, at which time the researcher may follow the lead of the participant (Knott et al., 2022).

Ethical guidelines for interview research with parents of underage children  245 In multilingual settings, one of the ways to give the research participant more power in guiding the interview is to choose a language in which they are more fluent than the researcher, thereby changing the power asymmetry. Our own research (Heino 2018; Heino & Lillrank, 2021) has touched upon sensitive topics, such as experiences of violence or racism and child disability, and in such situations, we felt it important to let the research participants guide the course of the conversation. Since there were topics that the participants wanted to elaborate on more or that provoked emotions, it did not seem appropriate for us to cut off their dialogue and move to the next question just for the sake of following the research plan. In some cases, when one interview did not seem enough, we interviewed participants a second time if they themselves had expressed willingness to do so, even though doing so was not in the original plan. The ideal place for an interview is one that is most accessible to the participants and in which they can feel safe and relaxed. A common practice for us is to ask the participants themselves where they would like to meet and offer them some possibilities, such as university facilities, a local library close to respondents’ homes, or, if it is easier for them, their own homes. When interviewing parents with small children, it is often easier for research participants to invite researchers to their homes, especially if their children are present with them during the interviews, since no additional care arrangements would be needed (Liamputtong, 2020). If an interview takes place at a research participant’s home, it is important to think about practical issues, such as whether the possible presence of family members would create challenges to confidentiality and anonymity if only one family member is participating in the research (Notko et al., 2013). The interview environment creates the context for an interview; in their homes, the research participants are the hosts, while at the university, the researchers are the hosts. In home interviews, it is often possible to acquire more information about participants’ interests and lives since the researcher is entering their private space and personal belongings and cues about their interests are often visible (Hämäläinen & Rautio, 2013). In some studies (Heino, 2018; Heino & Lillrank, 2021), in which research participants were interviewed both at home and in public places such as local libraries, we noticed that the interviews in public spaces felt more official and were shorter than those at the participants’ homes. Home interviews provided an opportunity, before the actual interview, for informal discussions and warm-up talking about things in the home environment, such as pictures and paintings on the wall and flowers, handicrafts, and pets in the space. Often, we were offered food and snacks. After an interview, drinking tea together and chatting about informal topics can help researchers and perhaps the research participants transfer their thoughts from sensitive to everyday topics. However, we have noted that research participants clearly consume time and energy in preparing for our visits and hosting them, which requires more resources than would be needed for interviews in other spaces. Remote interviews, such as those conducted by telephone or video, are methods that can be used in family research and have attracted interest in the social sciences, especially after 2020, when the COVID-19 pandemic necessitated the use of alternatives to face-to-face data collection. According to a review of previous studies (Thunberg & Arnell, 2022), such methods pose both opportunities and challenges in qualitative research. Among the positive aspects of digital interviews are that they enhance long-distance participation, are time-saving and costeffective, and enable the participation of people with disabilities, chronic health conditions, mental health issues such as panic disorder, and those with caring responsibilities. However,

246  Handbook of sensitive research in the social sciences reading visual cues and observing body language can be difficult for both researchers and research participants, and participants with less access to technology may be excluded. In addition, concerns about the data security of video-calling platforms should be considered carefully. There is also a risk of distractions in the home environment or with digital devices, and there are challenges in supporting participants remotely in situations of distress (Engward et al., 2022; Keen et al., 2022). In her ongoing research project, having reached migrant parents with disabled children through non-governmental organisations, the first author interviewed them over the telephone. A positive side of the phone interviews was that they enabled the parents to stay anonymous since the researcher did not obtain their personal information. She did ask for some vague background information, such as their age, year of moving to Finland, level of education, and the disability of the child. Staying anonymous was especially important to the parents, who did not yet have residence permits and criticised the lack of support from the authorities. Some of the parents were walking or driving home from work or school during the interviews, and some conversed with the researcher during their child’s daytime nap and gave their interviews in a way that did not disturb their family schedules too greatly. However, this kind of interview needs to be planned carefully in the sense that there is some kind of ‘warm-up talk’ and closure. Moreover, ethical questions such as informed consent, confidentiality, anonymity, and data storage must be expressed clearly. In these types of interviews, it is important to listen to the tone of voice of the participant and provide empathy and acknowledgement of what they are speaking about. Role of Language The role of language is important to consider in all stages of research (see Liamputtong, 2010, 2023). However, it especially actualises during an interview when an interpreter, the research participant, and the researcher are all present. Word-to-word interpretation, as well as conveying broader cultural understanding, is often needed (Murphy et al., 2012). According to Gorin (2008), relying on body language and reading participants’ physical clues becomes more important in interpreted interviews since the researchers are the ones who shoulder the responsibility for guiding the situation and need to be aware, for example, of participants showing signs of distress. Drawing from our studies on interpreting in child and family services (Heino & Jäppinen, 2023; Jäppinen & Heino, 2023), the following guidelines can be applied in research. The first is to ask participants if they have any wishes regarding interpreters, such as the interpreter’s gender, language, dialect, or ethnicity. Reflection on the positionality and social locations of the researcher is encouraged in social sciences, but this issue is not always taken into consideration when working with interpreters. Care should be taken regarding these issues, especially when interviewing people from a small ethnic or language group. Sometimes, booking an interpreter from a city in a different part of the country or carrying out the interpretation over the phone or another electronic technique without mentioning the participant’s name during the interview can also be considered. Second, if professional vocabulary is used, such as in relation to social services, in the best-case scenario, interpreters should be given information about the theme beforehand so that they can prepare. Researchers can also express to the interpreter that using a dictionary and asking for clarification of concepts from the researcher is acceptable during the interview,

Ethical guidelines for interview research with parents of underage children  247 since the exact equivalence or meaning may not exist in different languages. Both authors have experienced interviews that had to be interrupted because of the low quality of the interpretation. Third, the roles of the various parties and the interpreter’s commitment to confidentiality should also be clearly discussed, and the rules of interpretation should be clearly stated before an interview. Consecutive interpretation is usually used in research interviews. This means that participants speak one to three sentences, and then the interpreter interprets the speech. When studying sensitive topics or if strong emotions arise, participants can sometimes speak for longer to explain the whole picture. In addition, if several participants are present, the interpreter will not necessarily have time to interpret everything in detail and will thus only summarise different accounts to the researcher because the conversation is quickly moving forward. In our studies (Heino & Lillrank, 2021), in such cases, we have asked the interpreter to listen to audiotapes after the interview and make more detailed translations of the discussion. This improves the quality and accuracy of the interview transcripts, although it requires additional resources from the research project. Overall, interpretation plays a crucial role in qualitative interview research and also affects how trustworthy it is. It is noteworthy that research is sometimes published in a language different from that in which it is conducted. This means that the interpreter will first interpret the participants’ accounts from the original language to a second language, and then the researchers will translate those accounts to a third language in which they want to publish their research. The risk of loss of meaning increases in such cases, but unfortunately, reporting about this process is not included in current reporting guidelines, which means researchers need to be proactive in reflecting such issues (Yunus et al., 2022).

PRESENTING THE RESULTS Confidentiality When presenting research results, confidentiality is one of the first aspects that need to be considered (see Chapter 8). Anonymising participants’ names and background information and sometimes the research contexts, such as the geographic origin of the participants and their place of residence, are therefore standard practices (Liamputtong, 2020). In qualitative studies, researchers are usually interested in in-depth, detailed narratives of participants, which can pose a threat to revealing their identity, especially if the study is focused on a small group (Clark-Kazak, 2021). Similarly, gatekeepers such as NGOs can be unintentionally exposed in the research due to the small number of such organisations working in the context of migration (Zapata-Barrero & Yalaz, 2020). Similar questions arise in family research when studying sensitive topics. One solution used in such research is to leave out the pseudonyms of research participants or the number of interviews so that data extracts cannot be connected to individual participants. Another concrete solution is to ask participants only for rough background data. Research institutions and funding bodies often encourage data sharing and open data access once a study is finished to increase research transparency, comprehensively use data, and avoid duplication of research. However, data protection is a complex issue because, in qualitative interview studies, small sample sizes are used and data often contain detailed information

248  Handbook of sensitive research in the social sciences about the research participants, even if they are pseudonymised carefully. Complete anonymisation of qualitative data is rarely possible, since omitting all identifying information from unique interview narratives is not possible or doing so would at least make them unreadable. This poses a challenge to researchers to ensure that data are used in ethical ways (ZapataBarrero & Yalaz, 2020). Researchers have a duty to protect research participants’ personal information, since identification can have serious consequences for and cause harm to participants. Thus, the secondary use of data should be considered carefully, and if secondary use is justified, the researcher should provide participants with information about this and offer the possibility to decline such use. Making Interpretations and Creating Representations When deciding which method of analysis to use, the key question is whether the method would provide a good fit for the research questions posed. Researchers can, for example, analyse data from a narrative perspective, look closely at how participants speak about phenomena, or scrutinise which themes can be recognised across the data. The analytical lens will affect the kind of representations researchers create on the basis of their data. It is the obligation of researchers to ground their interpretations in the data, and thus, quotes and data extracts are often used in qualitative interview studies. As mentioned earlier, this should always be considered from the point of view of confidentiality. All information that is not crucial to the interpretation of the data can be deleted, pseudonymised or anonymised (Knott, 2022). Sometimes, when working with vulnerable groups, the defined implicit or explicit aim of research is to ‘give voice’ to a marginalised group whose views have not previously been widely studied or considered. However, it is important to remember that in traditional interview studies, the voice of participants is mediated by researchers’ interpretations (Ahmed, 2000), especially if the participants are not involved in the analysis and writing of publications. Another factor that should be considered here is that there is rarely one voice present in the data. Even in the same study, participants can have very different experiences and interpretations of phenomena, and this should also be articulated in the publication. It is also worth noting this perspective in family studies, since family members can and often do have different views (Pösö, 2008). Taha (2022) encouraged researchers to take an anti-colonial approach in qualitative studies in the contexts of migration and transnationalism. This means not making interpretations in isolation from the research participants, trying to minimise unequal positions and power asymmetries between researchers and research participants, and expanding the perspective of researchers to include non-commonly-used theoretical explanations and methodological tools. This can, for example, include rethinking Western ideas and norms of family. Dissemination of Results Beyond the Academic Community In the dissemination of research results, it is important to consider the accessibility of the results and to try to maximise the benefits of the research to the participants as well as, for example, the gatekeepers who devoted time to the research and other stakeholders. However, there is a lack of skills and resources to effectively disseminate research results to practice stakeholders. Moreover, the ways in which scholars’ achievements are assessed in academia

Ethical guidelines for interview research with parents of underage children  249 do not encourage them to invest time beyond scientific publishing. Since migration is a heated political topic in many societies, scholars presenting and discussing their research results in popular media may also be exposed to hate speech and harassment, and this can influence their willingness to participate in public debate. Clark-Kazak (2021) suggested that researchers ensure maximum dissemination of their results in different languages by using multiple media, including oral, written, and visual methods. In our own research projects, we have written blogs and columns, occasionally together with social workers, NGO representatives, and interpreters, to bring forward important issues that parents and families face in the context of migration related to language, inequality, and social services. To disseminate the results to social services, we have also organised webinars, lectures, and workshops for professionals working with certain groups of people. Here, we have found it effective to hold long-term partnerships with practice stakeholders to facilitate interactive knowledge transfer and to reach practitioners through webinars and other events for research dissemination (see also Isokuortti et al., 2023). Dissemination of results in different languages requires resources, and this should be acknowledged in funding applications. However, it is noteworthy that free machine and AI translation services are available to researchers on the internet, and their quality has improved in recent years. Although such services cannot replace professional translation, they can be useful tools in some cases, such as when translating unofficial or non-academic texts. Realistic plans about how the benefits will be shared should be made before embarking on research, and they should be articulated with participants (Deps et al., 2022). Sometimes, the benefits of research can also be negotiated. In our own research projects, we have, for example, provided lectures and training, based on our research, to the practitioners of partner organisations. Sometimes, a formal partnership with a university has helped some organisations obtain funding for their own development projects. According to Clark-Kazak (2021), Deps et al. (2022) and Murphy et al. (2012), research should not only aim to minimise harm but also challenge social injustice, oppressive structures, and power asymmetries that are present in the context of migration. This means that researchers should try to find ways to influence policies and practices in relation to migration through their studies.

CONCLUSION AND FUTURE DIRECTIONS As we have discussed in this chapter, researchers conducting family research in the context of migration should actively engage in ethical reflections at all stages of their research. This means transparency in practical and methodological issues from ethical points of view. As Zapata-Barrero and Yalaz (2020) stated, the politicised nature of migration gives the researcher increased responsibility to represent their results and anticipate how the knowledge they produce will influence public and political discussion. In qualitative family research, researchers will become involved with the personal and sensitive information of research participants (Gabb, 2010), which raises issues of privacy and vulnerability. Regardless of the complex elements that we have detailed in this chapter, we encourage researchers to study families in the context of migration and to ask questions that have not been asked before. Family research in the context of migration often means tolerating and managing ambivalence. In our view, it is crucial that the affected institutions provide

250  Handbook of sensitive research in the social sciences necessary structures for support and supervision, especially for younger researchers entering this field and facing these questions. In the future, we hope to see more in-depth discussions and teaching about these themes during different phases of social science education. It is important to provide students with opportunities to reflect on and learn about ethical questions at the early stages of their studies and research careers.

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18. Sensitively researching vulnerable populations—reflections from the field... Declan Fahie

INTRODUCTION I have spread my dreams under your feet, Tread softly because you tread on my dreams. “Aedh Wishes for the Cloths of Heaven” W. B. Yeats (1899) This chapter represents a deeply personal reflection on my professional research experience, which spans almost 20 years. Across my academic career (to date!), my scholarship has consistently involved working with populations that may be considered vulnerable on topics which are, on the face of it, sensitive. These include targets of workplace bullying in schools (Fahie, 2013, 2014b; Fahie & Devine, 2014; Fahie & Dunne, 2021), the experiences of LGBTQ+ teachers in Irish denominational schools (Fahie 2016, 2017; Fahie, Quilty & DePalma Ungaro, 2019) and toxic leadership in higher education (Fahie, 2019). I am also interested in the scholarship of research methodologies (see Fahie & Bergin, 2022, for example), and recently, I have begun publishing with my own research students (Nee and Fahie, 2022 and Reda, Fahie & Saleendran, 2022, for example). While I have previously grappled with the complex issues of working with vulnerable groups and difficult-to-reach populations (Fahie & McGillicuddy, 2018), one paper in particular (Fahie, 2014a), published almost a decade ago, remains both relevant and current within contemporary discourses on research ethics, in that it focuses specifically on the challenges and rewards of working with vulnerable participants in research settings. Drawing on this paper for the chapter, I (re)consider the ethical, methodological, and practical challenges of working within the field of sensitive research and offer my reflections on some of the obstacles which have arisen in subsequent years and still inform and shape my own personal research philosophy.

UNDERSTANDING SENSITIVE RESEARCH Sensitive research usually involves difficult-to-talk-about topics. It is research that investigates intimate, personal, and emotive subjects and issues (Liamputtong, 2007; Isham, BradburyJones & Hewison, 2019; see Chapter 1 in this volume). Subjective in nature, sensitive topics are also socially and culturally bound (Powell, Graham, McArthur, Moore, Chalmers & Taplin, 2020). Engaging in such research, on topics like death, suicide, violence, serious illness, abuse, and so on often involves dealing with vulnerable and/or traumatised participants and demands care and professionalism, as well as an awareness of safety and ethics on the part of the researcher, particularly if any potential risk of further harm is to be diminished (Dempsey, Dowling, Larkin & Murphy, 2016). In essence, while the word ‘sensitive’ 254

Sensitively researching vulnerable populations—reflections from the field...  255 in ‘sensitive research’ refers to the topic under consideration and the vulnerability of the participant(s), it should also reflect the thoughtful and responsive methodological approach adopted by the researcher (see also Chapter 1). However, while any topic under investigation has the potential to be considered ‘sensitive,’ it is the brittle nexus between the fundamental nature of the topic under consideration and the vulnerable profile of the research participants that defines sensitive research in practice (Mallon & Elliott, 2021). While the deliberate ‘invasion’ of the participants’ life (hi)story by the researcher(s) is fraught with methodological and ethical challenges (Band-Winterstein, Doron & Naim, 2014), central to the success of the research initiative is the fostering of a respectful, authentic relationship between participant and researcher (Fahie, 2014b; Newton, 2017). This risk of harm applies to the researcher as well as the researched (Dickson-Swift, James, Kippen & Liamputtong, 2009) and the potential for vicarious traumatisation is real (DicksonSwift, James, Kippen & Liamputtong, 2007). Consequently, the responsible researcher must tread a careful line; one which acknowledges their own positionality, as well as their very subjective emotional/empathetic responses to the data and the histories being recounted (Hanna, 2019; see also Chapters 1 & 3). Indeed, with the help of deliberate and systematic self-reflection, the successful navigation of this contested space should serve to enrich the scholarship, stimulating the potential for a deeper engagement with, and more nuanced understanding of, the sensitive topic under consideration (see Lewis, 2011 and Augusto & Hilário, 2019, for example).

TRUST ME, I’M A DOCTOR! The most critical challenge for the qualitative researcher (or indeed any researcher) is the need to obtain high-quality data without which, quite simply, they will be unable to produce publishable scholarship. As a result, however, there is often an inherent structural tension at the heart of the researcher’s endeavours—how to balance the deliberate fostering of a productive relational environment while simultaneously recognising and acknowledging the site- and time-specific quality of the interviewer/interviewee relationship. For this relationship to be fruitful, it must be predicated on the participant trusting the interviewer; believing that they are acting in good faith, that the interview process will not harm them, and that the research will lead to a deeper understanding of the topic under consideration (Kennedy et al., 2021). However, while the primary focus of the researcher is to gather rich data by quickly establishing a genuine empathetic relationship of trust, there is sometimes a simultaneous, yet slowly evolving, mismatch of expectations and/or understandings between the interviewer and the interviewee. In order to overcome this trepidation on the part of the research participant, the skilled interviewer must work hard to swiftly foster a relationship of respect and empathy. Nevertheless, in such circumstances, it is very easy for the vulnerable participant to misread the quality of the interaction and come to ascribe a level of intimacy that is, at the very least, both unreasonable and disproportionate. The interviewee, in their vulnerable state, may misinterpret social cues manifested during the data-gathering process by the researcher (empathy, camaraderie, active listening, attention-giving) as markers of the development of a nascent friendship or relationship. While there is no deliberate attempt on the part of the researcher to mislead the interviewee or to give an incorrect impression as to the trajectory of the relationship post-interview, the vulnerable research participant—who has just revealed deeply

256  Handbook of sensitive research in the social sciences personal/traumatic information—may become distressed and surprised/bewildered at the finality of its conclusion. In worst-case scenarios, this seemingly abrupt and cold conclusion may serve to further traumatise the interviewee. It is important to stress that there is nothing untoward or inappropriate with these methodological approaches, that is, adopting careful strategies to make the interviewee feel comfortable and secure. Indeed, without such choreographed techniques on the part of the researcher, no meaningful data could ever be collected. But great care on the part of the researcher has to be taken to pre-empt such situations arising. Fundamental to this is the criticality of good communication, a factor which will be discussed later in the chapter. Acknowledging my own failures in this regard (see Fahie, 2014a), I recall how one research participant attempted to continue our contact for months after the interview was completed. In retrospect, I had obviously not been sufficiently clear when setting out the parameters of the research process. While the interviewee believed us to be friends, I was initially unaware that their regular attempts to contact me in the subsequent weeks and months represented anything untoward. While the efforts on the part of the participant were far from sinister, I became increasingly uncomfortable with the ongoing interaction and invitations to meet. To my shame, I just let the contact peter out and did not address the situation directly. I now believe that approach to have been both cowardly and unprofessional on my part. From this experience, I learnt that there are no taken-for-granted assumptions relating to a research relationship; that it is incumbent on the researcher to preface any interaction with an explicit description of the parameters of the research encounter and to temper any expectations on the part of the interviewees as to the post-relationship interactions. Such anticipatory boundarysetting represents good practice and facilitates the development of an interpersonal dynamic that, while fruitful, is delimited by the inherent essence and characteristics of an appropriate interviewer/interviewee dyad.

THE RESEARCHER AS DANCER? The research participant must have confidence that the researcher is acting fairly and justly; they must believe that they will not be harmed by the data-gathering process and/or subsequent dissemination, and they must have absolute faith that the researcher will act in their best interest, protecting them (even from themselves) and safeguarding their wellbeing and security. This may not, however, be as simple as it initially appears. In my experience, targets of workplace bullying, for example, have regularly expressed their wish to waive anonymity as a deliberate retributional strategy designed to expose and punish their alleged tormentor(s). The act of telling their story may, because of the nature of the narrative, heighten their emotions and provoke a level of recklessness that could have potentially negative consequences for them personally, professionally, and legally. In such cases, it is the responsibility of the researcher to protect/safeguard them from this type of self-harm. Indeed, since the repercussions of such an action could be profound and, echoing the medical imperative of primum non nocere (first do no harm), the researcher has a moral and ethical responsibility to ensure that the participant’s involvement in the research results in no negative outcomes for them and that, ultimately, they leave the process in no worse condition than when they entered. As already discussed, there are undoubtedly competing/contradictory expectations and motives for taking part in the data-gathering process for the persons engaged in the interview(s). On the one

Sensitively researching vulnerable populations—reflections from the field...  257 hand, the researcher will be seeking to efficiently obtain rich raw data, while the participant may agree to detail their lived experiences for a variety of reasons: to contribute to the corpus of existing knowledge in the area; out of curiosity about the research process; a desire to have their voice heard; or, as already detailed, a desire for revenge and/or retribution. Once again, clarity about the parameters and scope of the research, as well as the role of the researcher as manager of the whole project, is critical to protect all of the parties involved, as well as the integrity of the research process itself. A research interview may be likened, metaphorically, to an improvised waltz. While there are basic steps that are known to both participants, the researcher is the lead and the trajectory of the dance only reveals itself as the music swells and the couple whirls around the dancefloor. It is easy to get caught up in the momentum of the dance, in the heady mix of music and movement. However, control is key, and the researcher (lead) must ensure that the timing is correct, that their partner is comfortable, and that the dance comes to an end in a gradual, appropriate, and synchronous tandem with the (mood) music.

GENUINENESS, AUTHENTICITY, EMPATHY, CARE, LOVE? The ethical tension at the heart of this interviewer/interviewee relationship must be moderated by a spirit of genuineness, care, authenticity, empathy and, indeed, love—what Buber (1970) would call an I-Thou relationship. Such interpersonal dynamics may be predicated on reciprocity and mutuality, whereby transparency and accessibility are paramount and both parties are truly present in the interactive dynamic. In healthy research relationships, the other is not a separate(d) entity; instead, the other is a key informing agent in the democratic interaction, thus facilitating the development of true meaningfulness. This is particularly important when working with research participants who have been systematically othered, excluded, or dehumanised. Such individuals, by definition, have been positioned (or have positioned themselves) as ‘less than,’ as vulnerable, as weak, as ‘in need of protection.’ The skilled, ethical researcher proceeds with caution and, indeed, a degree of wariness. It is not simply that the topic itself is considered sensitive, but the researcher must be sensitive too in the manner in which they negotiate and navigate the data-gathering landscape. In this regard, the welfare of the participant must be paramount. Ethical behaviour demands that the researcher ‘parks’ their own needs (such as for obtaining high-quality data) and foregrounds the participant’s wellbeing and safety as intrinsic to the development and maintenance of any healthy interpersonal dynamic.

THE DILEMMA OF ETHICAL APPROVAL Formal institutional ethical approval is a requirement of the vast majority of academic/ research institutions prior to the gathering of any research data. It is now considered good professional practice to submit comprehensive research plans detailing potential ethical issues that may arise during the course of the research project and to outline strategies to mitigate these challenges to an internal committee of adjudicators/peers who then assess the submission and decide on the appropriateness of the approaches detailed. Though time-consuming, the act of writing such a proposal forces the applicant to (re)consider their plan from a variety

258  Handbook of sensitive research in the social sciences of different perspectives and to reflect upon the impact and any potential unintended consequences of their research. Obviously, this is particularly important when researching sensitive topics or working with vulnerable cohorts (see Chapters 15, 16 & 17). While the bureaucratic requirements for obtaining formal ethical approval can be frustratingly complex, this iterative process of methodological refining and redrafting can serve to both hone procedures and ensure that the proposed activities fall within the bounds of what may be considered ethical and moral scholarly behaviour. However, I would caution that, should the awarding of ethical approval become too bureaucratic and stray from its essential purpose of ensuring that the research process is moral and pre-emptively protects the vulnerable, it can easily become like a driving licence—once obtained, no longer considered essential for daily professional practice (apologies for the clumsy metaphor!). Paradoxically, overly onerous ethical approval processes may serve to reduce or diminish the issue of ethical research behaviour to a ‘tick-box’ exercise. Once the required institutional documentation is completed and approved, it may be perceived that there is no longer a requirement to consider ethics as a transcending motivational force within—and without—the research project. Consequently, in the absence of any external oversight, this may tempt a researcher to engage in activities that are inappropriate and/or dangerous. In other words, the awarding of a rubber-stamped, institutional licence-to-proceed may serve to undermine the imperative to ‘act’ ethically thenceforth. This is particularly concerning as complex moral issues or human behaviours often only emerge once the researcher has embarked upon their research journey (particularly those undertaking research on sensitive subjects) and regular self-evaluation is required to ensure that the researcher’s actions are, simultaneously, appropriate, ethical, and protective of the participants’ health and wellbeing. In essence, I would argue that an overly complicated and seemingly inflexible approach to the awarding of formal institutional ethical approval can have the unintended consequence of siloing ethics into a mere step to be completed (and then forgotten) in the journey of doing research, ironically decoupling ethical approval from ethical behaviour. This is not to suggest for one moment that such formal processes are not incredibly valuable or that they should be diluted or simplified. It is just that researchers (or their academic supervisors) must be mindful throughout the whole project that, once approval has been granted, rather than representing the end of a process, it represents the beginning of a moral imperative to act ethically throughout the lifetime of the project. It is a critical stage on the journey, but it is one that informs and shapes the whole trajectory of the research, permeating all that is about to happen and ensuring the safety of all involved. Power Imbalance While there is an undoubted imbalance of power inherent in all researcher/researched relationships, this is particularly the case for those engaged in research focusing on sensitive topics. Sensitive research topics, by their very definition, include those in which the subjects of the study are disenfranchised, vulnerable, powerless, and weak (see Liamputtong, 2007; see Chapter 1). In contrast, the researcher, with their institutional and academic credentials/titles, fluency with language, and professional demeanour may appear, to the casual observer at least, authoritative, expert, and powerful. Ironically, while this experiential vulnerability and powerlessness is the actual focus of the research, the essential nature of such topics may mean that participant agency is severely compromised by their own lived experiences. Therefore,

Sensitively researching vulnerable populations—reflections from the field...  259 the ability of the vulnerable participant to say no, to withdraw from the research, to assert their own agency may be mitigated by a subjective perception of their own impotence. For example, speaking to someone like an academic from a university may, in itself, cause them to feel intimidated or awestruck; to feel that their initial acquiescence/consent cannot be overturned and/or to feel unable to withdraw from the process even when they feel distressed or anxious. This raises a significant ethical dilemma for the researcher and, as a result, the researcher of sensitive topics must, themselves, be hypersensitive to the often subtle signs of anxiety, stress, or discomfort should they be manifested by the participants during the data gathering. Even after the participant has signed the consent form and acknowledged their understanding of the consequences of taking part in the research, judgment calls (made in the best interests of the participant and not those of the researcher) must be made based not on merely asking ‘Are you okay?’, but on the careful and systematic monitoring of the preponderance of ‘evidence’ which manifests during the course of the interview or focus group. Drawing on the skilled and empathic interviewer’s own life experiences, both verbal cues (an apparent reluctance to answer questions fully, short or non-specific answers, tangential responses) and non-verbal cues (lowering of the head, turning their body away from the interviewer, leg shaking, poor eye contact) must be carefully observed and appropriate responsive (re)actions taken. To ignore these cues is irresponsible, unethical, and, ultimately, dangerous. Consent Two further issues arise in respect of informed consent. First, considered thought must be given to whether or not potential participants who are members of a vulnerable population can give truly informed consent. This is not to suggest that such persons cannot give informed consent, but victims of domestic violence, rape, sexual assault, bullying, etc., may be deeply traumatised by their experiences and, for a small minority, their ability to make rational or logical decisions may be diminished. Once again, the researcher must be aware of this, and their own professional and personal moral compass must be invoked when dealing with such individuals. A critical friend or academic supervisor may be useful in this regard. A second issue follows from the first point and, again, relates to formal institutional ethical approval. There is an assumption that an individual’s identity is fixed and, if the data-gathering process continues over a period of time (longitudinally, for example), the individual’s ability to articulate their distress and/or wish to withdraw does not necessarily remain static and may evolve and change in tandem with their own sense of empowerment or disempowerment. This points to the importance of regularly ‘checking in’ with the participant to ensure that their acquiescence remains unaltered and uncompromised.

WHERE FROM HERE?—SOME PRACTICAL ADVICE… It has been an honour to speak to hundreds of interview participants over the past twenty or so years, and I am deeply grateful to each and every one of them for taking the time to share their—often harrowing—stories with me. They have taught me a lot, and though I hope I am a more skilled interviewer now than when I began, I recognise that my learning journey in this regard is continuous. As a result, I remain committed to interrogating my own practice and to regularly upskilling to ensure that I am sensitive to the emerging trends and discourses

260  Handbook of sensitive research in the social sciences that inform my professional practice. Drawing on my experiences (and mistakes!) as an active researcher and research supervisor, I have some advice that I humbly wish to share. Be Aware of Context Different groups and individuals respond differently to similar questions, and the researcher must be incredibly sensitive to non-verbal cues and body language to ascertain compliance and consent—even after formal consent has been given. I recall interviewing a young gay teacher who had travelled a long distance to meet me and had initially been very enthusiastic about participating in the research project. He became increasingly anxious as the interview progressed. This was manifested through poor eye contact, frequent toilet/coffee breaks, tangential responses, and regular questions regarding anonymity and the publication process. He also continually adjusted and readjusted his jacket and shirt as he spoke. Halfway through the interview, I turned the recorder off and indicated that I was taking a short comfort break. I then quietly pointed out that it was his choice whether or not to continue the interview. The young man looked relieved, and when I returned to the table, he asked to withdraw from the research and apologised for wasting my time. I assured him that he had not wasted my time and that none of his recorded interviews would be used in the research. We left on good terms. From this experience, I learnt that consent is a process, not a destination, and that the reality of an interview situation can prove distressing and intimidating for any potential interviewee. The lived experience of the interview/focus group may be very different from what the participant had envisaged when they originally signed the consent form. Protect your Participants—Even from Themselves While informed consent is paramount, care needs to be taken when interviewee behaviour is potentially damaging to themselves. As stated already, interview participants who believe that they have been victims of injustice or unfairness (targets of bullying or toxic behaviours in the workspace, for example) sometimes wish to forego anonymity and publicly name and shame their alleged abuser. In such a case, it is the responsibility of the ethical interviewer to protect the interviewee from themselves and from the potentially negative repercussions of such behaviour. Explaining the nature of your responsibilities towards the interviewee, discussing the implications of such a decision, and standing firm in your resolve not to diminish the participant’s anonymity are critical. In extreme cases, it may be necessary to remove the participant from the research project as a means of protecting them from their own potentially destructive behaviours. This is only possible if the relationship has been professional from the outset. This brings us to the next point. Be Clear About the Scope and the Limits of the Interview Relationship This clarity needs to be reiterated before, during, and after the data gathering. Boundary setting protects all involved and circumvents potential ‘messiness’ when the interviews are completed. It also allows the researcher to establish and maintain a professional distance which, while caring, ensures there is no professional and personal overlap in the researcher/ researched relationship. To my mind, such a relationship must be ‘one step removed,’ more neighbourly than familial.

Sensitively researching vulnerable populations—reflections from the field...  261 Identify a Critical Friend It is important to systematically engage with someone who can support you as an ethical researcher and challenge your taken-for-granted thinking. While a university supervisor/ adviser may perform this role for their student, a colleague may also perform the role for professional researchers on a reciprocal basis and facilitate an interrogation of motivations, activities, and responses in a safe and informal manner. Personally, I still regularly speak to colleagues about my work and my analysis, even more so now as an experienced researcher, to ensure that I have not overlooked some ethical or moral issue and that I am behaving appropriately, in the best interest of the participants. Be Reflexive This is not a casual ‘thinking about what happened.’ It is a deliberative, systematic interrogation of one’s own actions, designed to identify successes and failures and, consequently, improve, learn, and inform in order to do better (see Chapter 1). This is something I did following some challenging experiences in ‘the field’ and have found it to be very useful. The physical act of writing down the events of the day demands a level of interrogation and (re) ordering of one’s thoughts which, in turn, affords the writer a level of emotional and existential detachment from those recent events. A diary or journal can help in this regard (I’m old school and use a hardback notebook which I write in after every field activity). The content of such reflective journals could, in themselves, potentially form the basis of subsequent raw data which can be analysed as part of the research project (subject, of course, to prior ethical approval). Be Authentic Truthfulness, transparency, and genuineness are key to working with sensitive research as well as with the people who inform such scholarship. This pertains not just to the researcher’s relationship with participants, but also to their relationship with themselves. Ironically, authenticity is easy to fake and only scrupulous honesty will ensure truly ethical research. As a rule of thumb, placing the wellbeing of the participant at the centre of all decisions is an appropriate default position for any scholar. Commit to Continuous Professional Development (CPD) Even the most experienced researcher must acknowledge that techniques and discourses around research are in a constant state of flux. Regular training to ensure skills and competencies are reflective of contemporary thinking in research methodologies is key. Be Kind This is probably the most important piece of advice of all. Indulge your instinct towards empathy or ‘fellow feeling,’ placing yourself in the shoes of others (especially when their experiences of life are very different from your own). Kindness cannot be taught and costs nothing. Though it is rarely talked about in the literature, I am at a loss to see how an unkind

262  Handbook of sensitive research in the social sciences person could successfully navigate this particular research landscape if they do not have, in their hearts, a sense of care and warmth towards those they encounter and with whom they engage. Be nice. Be caring. Be kind.

CONCLUSION AND FUTURE DIRECTIONS I am concerned that the increasingly neoliberal demands of universities and external funders (see McCann, Granter, Hyde & Aroles, (2020), for example) may tempt researchers towards unethical practices and potentially lead to the exploitation of vulnerable populations, particularly in the rush to design/publish innovative, well-received and highly-cited research. Academics’ career trajectories/promotions and successes in obtaining funding are, all too often, determined by publishing outputs that are underpinned by the calibre of the raw data obtained. Scholarly success and, indeed, university rankings are based upon the number of publications and the quality of the journals in which they are published. Again, all these variables are linked inextricably to the gathering of rich original data. The skilled researcher must be carefully attuned to the need for culturally sensitive research, one which acknowledges both their own positionality, as well as the vulnerabilities of those who are being studied. They must see the act of interviewing as a relational social activity, and they must endeavour, through systematic self-reflection and active listening, to understand and empathise with those who have consented to participate in the research. The skilled researcher, by their actions, demonstrates ethical practice, with the participant respectfully engaged as an equal co-producer of the research. In this regard, it is important that the researcher acknowledges and embeds different cultural, social, and experiential contexts in the finished research and does so in a transparent manner that is detailed explicitly in any publications. The ethical researcher will listen carefully in order to both understand and come to a deeper realisation of the context of the lived experiences described. By so doing, their analysis will be nuanced and insightful. Central to the success and morality of engaging in research with vulnerable or difficultto-reach populations is the fostering of a relationship of truth, one which is predicated on an assumption of honesty and underpinned by trust, respect, and a parity of esteem. Such a relationship must acknowledge the impact of an inevitable power differential while still managing to navigate this imbalance through respectful dialogue and a reciprocal understanding of the consequences for both parties. The data-gathering activity must not, in any way, hurt, damage, or cause distress to the interviewee. In other words, the research participant should not be in a worse position after the interview than they were before. But this is not a passive process; it is never simply about not doing something. It is an active decision, one which must take into account the different contextual challenges, as well as the potential for hurt, and factor these into the way in which the research methodology is designed in the first instance and subsequent data-gathering strategies are conducted.

REFERENCES Augusto, F. R. & Hilário, A. P. (2019). “Through the looking glass”: The emotional journey of the volunteer ethnographer when researching sensitive topics with vulnerable populations. Qualitative Report, 24(13), 17–30. https://doi​.org​/10​.46743​/2160​-3715​/2019​.4118.

Sensitively researching vulnerable populations—reflections from the field...  263 Band-Winterstein, T., Doron, I., & Naim, S. (2014). ‘I take them with me’ – reflexivity in sensitive research, Reflective Practice, 15(4), 530–539. https://doi​.org​/10​.1080​/14623943​.2014​.900031. Buber, M. (1970). I and Thou (Vol. 243). New York: Simon and Schuster. Dempsey, L., Dowling, M., Larkin, P., & Murphy, K.. (2016). Sensitive interviewing in qualitative research. Research in Nursing & Health, 39(6), 480–490. https://doi​.org​/10​.1002​/nur​.21743. Dickson-Swift, V., James, E. L., Kippen, S., & Liamputtong, P. (2007). Doing sensitive research: What challenges do qualitative researchers face? Qualitative Research, 7(3), 327–353. https://doi​.org​/10​ .1177​/1468794107078515. Dickson-Swift, V., James, E. L., Kippen, S., & Liamputtong, P. (2009). Researching sensitive topics: Qualitative research as emotion work. Qualitative Research, 9(1), 61–79. https://doi​.org​/10​.1177​ /1468794108098031. Fahie, D. (2013) Workplace bullying and primary school teachers: The role of managerialist discourses. In M. O’Moore & P. Stevens (eds), Bullying in Irish education (pp.211–235), Cork: Cork University Press. Fahie, D. (2014a). Doing sensitive research sensitively - Ethical and methodological issues in researching workplace bullying. International Journal of Qualitative Methods, 13, 19–36. Fahie, D. (2014b). Blackboard bullies: workplace bullying in primary schools. Irish Educational Studies, 33(4), 435–450. https://doi​.org​/10​.1080​/03323315​.2014​.983679. Fahie, D. (2016). “Spectacularly exposed and vulnerable” – how Irish equality legislation subverted the personal and professional security of lesbian, gay and bisexual teachers. Sexualities, 19, 393–411. https://doi​.org​/10​.1177​/1363460715604331. Fahie, D. (2017). Faith of Our Fathers - lesbian, gay and bisexual teachers’ attitudes towards the teaching of religion in Irish denominational primary schools. Irish Educational Studies, 36(1), 9–24. Fahie, D. (2020). The lived experience of toxic leadership in Irish higher education. International Journal of Workplace Health Management, 13(3), 341–355. https://doi​.org​/10​.1108​/ IJWHM​- 07​-2019​ -0096. Fahie, D. & Bergin, S. (eds.) (2022) Doing research in education: A beginner’s guide. Dublin: UCD Press. Fahie, D. & Devine, D. (2014). The impact of workplace bullying on primary school teachers and principals. Scandinavian Journal of Educational Research, 58(2), 235–252. Fahie, D. & Dunne, G. (2021). Standing by or standing up? How philosophy can (in)form our understanding of bystander behaviours in workplace bullying dynamics. Societies, 11(28). https://doi​ .org​/10​.3390​/soc11020028. Fahie, D. & McGillicuddy, D. (2018) The (un)questionable challenges of sample access, recruitment and retention in contemporary workplace bullying research. In P. D’Cruz, E. Noronha, G. Notelaers, & C. Rayner (eds). Concepts, approaches and methods. Handbooks of workplace bullying, emotional abuse and harassment, vol 1. Singapore: Springer. https://doi​.org​/10​.1007​/978​-981​-10​-5334​- 4​_19​-1. Fahie, D., Quilty, A., & DePalma Ungaro, R. (eds) (2019) Queer teaching - teaching queer. London: Routledge. Hanna, E. (2019). The emotional labour of researching sensitive topics online: Considerations and implications. Qualitative Research, 19(5), 524–539. https://doi​.org​/10​.1177​/1468794118781735. Isham, L., Bradbury-Jones, C., & Hewison, A. (2019). Reflections on engaging with an advisory network in the context of a ‘sensitive’ research study. International Journal of Social Research Methodology, 22(1), 67–79. https://doi​.org​/10​.1080​/13645579​.2018​.1494971. Kennedy, M., Huxtable, R., Birchley, G., Ives, J., & Craddock, I. (2021). “A question of trust” and “a leap of faith” – study participants’ perspectives on consent, privacy, and trust in smart home research: Qualitative study. JMIR mHealth and uHealth, 9(11), e25227. https://doi​.org​/10​.2196​/25227. Lewis, M. K. (2011). Sensitivities: Emotion-work and resulting personal effects in researching black lesbians. Journal of Lesbian Studies, 15(1), 31–40. https://doi​.org​/10​.1080​/10894160​.2010​.508406. Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. Sage: London. Mallon, S. & Elliott, I. (2021). What is ‘sensitive’ about sensitive research? The sensitive researchers’ perspective. International Journal of Social Research Methodology, 24(5), 523–535. https://doi​.org​ /10​.1080​/13645579​.2020​.1857966.

264  Handbook of sensitive research in the social sciences McCann, L., Granter, E., Hyde, P., & Aroles, J. (2020). ‘Upon the gears and upon the wheels’: Terror convergence and total administration in the neoliberal university. Management Learning, 51(4), 431– 451. https://doi​.org​/10​.1177​/1350507620924162. Nee, C. & Fahie, D. (2022) Examining the challenges service providers and organisations face working with children in the direct provision system. Child Care in Practice, 1–14. https://doi​.org​/10​.1080​ /13575279​.2022​.2093329. Newton, V. L. (2017). ‘It’s good to be able to talk’: An exploration of the complexities of participant and researcher relationships when conducting sensitive research. Women’s Studies International Forum, 61, 93–99. Powell, M. A., Graham, A., McArthur, M., Moore, T., Chalmers, J. & Taplin, S. (2020). Children’s participation in research on sensitive topics: addressing concerns of decision-makers. Children’s Geographies, 18(3), 325–338. https://doi​.org​/10​.1080​/14733285​.2019​.1639623.

19. Researcher vulnerability: doing qualitative research in sensitive fields as mental health professionals Annette Binder

INTRODUCTION In the field of health research, vulnerability is usually associated with participants and the need to protect them from possible harm. This sentiment also forms the basis of the ethical guidelines for medical research on humans, which were established through the Declaration of Helsinki (World Medical Association (WMA), 1964). The underlying premise is that in medical research, there is inevitably a power and knowledge imbalance between researchers and participants. Vulnerability is often additionally assigned to certain individuals or groups as a fixed label. Especially in the context of researching mental health, an essential ethical aspect is to avoid increased vulnerability wherever possible, as those living with mental illness are already likely to experience vulnerability in their daily lives (Buchanan & Warwick, 2021). More recently, current approaches have begun to focus on the vulnerability of researchers (Sikic Micanovic et al., 2019; Sterie et al., 2023). Particularly in qualitative research, which is associated with uncertainty and spontaneity in interactions, in addition to involving unexpected situations, the great complexity of the phenomenon of vulnerability must be recognised. The conceptualisation of vulnerability by Luna (2009, 2019) is helpful here, as it classifies vulnerability as a fluid, context-dependent, and multi-layered phenomenon. Interviews, which are often used in qualitative research, require interpersonal interactions between researchers and participants. Interviews are, therefore, also a common area of ‘collaboration’ in research, where power relations can manifest and shift (Liamputtong, 2020; Serry & Liamputtong, 2022). This collaboration also requires personal involvement in the situation by both parties, as well as emotional labour (Hoffmann, 2007). Poppelreuter and Mierke (2008) consider emotional labour, that is, an activity that requires the demonstration of one’s own (usually positive) emotional state to the outside world, to be particularly stressful. In the role of researcher, a certain neutrality is required at the same time. This can make interview situations particularly complex and challenging. Taking into account the model of fluid vulnerability, it is easy to imagine that stress can arise for researchers that would otherwise not come to bear in contexts outside of research, even when dealing with the same topic. With regard to the effects of stress on qualitative researchers, in particular the experiences of novices and doctoral students (Kabir, 2022; Velardo & Elliott, 2021), as well as those associated with sensitive or demanding research fields (Dickson-Swift, 2022; Kumar & Cavallaro, 2018), have been examined (see the chapters in Part 3 of this volume). Conclusively, researchers have been found to be vulnerable at different individual levels during the research process, and the impact on one’s emotional wellbeing can be profound. Particularly when adopting a model of

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266  Handbook of sensitive research in the social sciences fluid vulnerability, the view should be broadened to include more aspects that may contribute to experiences of distress through more subtle and obscured ways and means. This chapter reflects on the vulnerabilities of healthcare professionals when doing qualitative research in sensitive areas. The argument is that through their multifaceted roles, even aspects that are not categorised as stressful per se can lead to stress among researchers when these roles come into conflict with each other. These observations were derived from a qualitative research project focused on alcohol consumption during pregnancy. Based on the project’s results and on pre-existing literature, the individual sources of possible stress are presented. The special responsibility of supervisors and experienced researchers with regard to the vulnerability of researchers is emphasised. In addition, a suggestion is made as to how more openly addressing and coping with stress could contribute to improving researchers’ reflexivity and, thus, the quality of qualitative research itself.

DOING QUALITATIVE RESEARCH IN SENSITIVE FIELDS AS MENTAL HEALTH PROFESSIONALS In this chapter, ‘doing’ is used analogously to the ‘doing gender’ theory (West & Zimmerman, 1987, 2002). The theory focuses on social constructions, which are based on behaviours that, in turn, reinforce the ideas underlying the construction. Similarly, the roles of therapist and researcher are socially constructed. Corresponding behaviours are expected from both the peer group and the individual themselves. Therefore, socialisation in the roles and the acquired habitus play a major role, especially as these have an impact on the internalised expectations of oneself in a certain role. Positioning the Author Self: Professional Background and Reasons for Conducting Qualitative Research in Sensitive Areas Reflexivity is a process of self-consciousness initiated at each step of the research process, which is considered to be crucial in qualitative research in general (Malterud, 2001). This attitude of systematically addressing the context of knowledge construction particularly applies to sensitive subject areas. These are associated with an especially high risk of burdens for participants and/or members of the research team in the context of the research process itself. In addition to professional training and professional activity, socialisation in the research context can also play a major role, especially if individuals are not exclusively involved in the research. In the following text, I will provide a brief overview of my professional training and my socialisation in the field of qualitative research. I conduct research in Germany, where medical research and clinical work in the university sector are often carried out in parallel by doctors and, in the case of mental illnesses, also by psychologists. This dual role often begins during medical studies at the university, where training in clinical care occurs. However, it is also expected that a doctorate study will be pursued parallel to the medical studies and clinical care responsibilities. I became interested in the field of mental illness early on in my studies, and, therefore, in the sixth semester (the degree programme comprises 13 semesters), I selected a doctoral topic on trauma and the mental health of professionals. This topic continues to interest me greatly. It was a coincidence that my responsibilities for the study, which applied mixed methods, focused mainly on qualitative research. The doctorate was supervised by an

Researcher vulnerability: doing qualitative research in sensitive fields  267 experienced researcher and medical doctor who had already supervised qualitative research projects but who had no particular experience in data collection or qualitative analysis of the data. Through his experience as a supervisor of qualitative projects, however, he introduced me to the relevant literature and a research workshop for qualitative methods. Typically, a research workshop for qualitative methods is a regular meeting for researchers from different working groups, which serves to increase the quality of qualitative research projects through exchange and collegial feedback. In addition, intersubjectivity is ensured by exchanging views on the interpretation of the qualitative analysis. Consequently, my socialisation as a qualitative researcher transpired primarily through the intensive exchange with other qualitative researchers from the field of medical research in the context of this research workshop for qualitative methods. My next research project, which focused on alcohol consumption during pregnancy, comprised similar conditions: my supervisor had ample clinical experience and socialisation in quantitative research, exclusively with supervisory experience related to qualitative research projects. The supervisors’ confidence in my abilities and acknowledgement of my previous experience as a qualitative researcher were positive. Unfortunately, however, there was no recognition of the potential burdens in the field of qualitative research with regard to the sensitive and highly stigmatised topic of alcohol consumption during pregnancy. Fortunately, during the realisation of the project, I became inspired to examine this problem more closely and, ultimately, to write this book chapter. I would like to emphasise the opportunity that reflexive consideration offers to all involved parties in the research process, regardless of their level of experience or exposure to qualitative or quantitative research methods. Thus, particularly relevant for this chapter: the multifaceted roles of all members of the research team shape the entire research process (Olukotun et al., 2021). In particular, role conflicts and different positionings towards the participants in different roles should be critically reflected upon. This allows researchers to identify areas of tension in the research process that require further deconstruction (Olukotun et al., 2021). At the same time, the tension experienced by researchers arising from their dual roles as researchers and healthcare professionals must be recognised and considered in order to protect their mental health. This is particularly important in sensitive fields of research. Researching Alcohol Consumption During Pregnancy as Healthcare Professionals My research arose from a qualitative part of the IRIS Plus project. IRIS is an acronym that stands for individualised, risk-adapted internet-based intervention programme to reduce alcohol and tobacco consumption in pregnant women (in German: Individualisierte, risikoadaptierte internetbasierte Intervention zur Verringerung des Alkohol- und Tabakkonsums bei Schwangeren). As a project of the Addiction Medicine and Addiction Research Section of the Clinic for Psychiatry and Psychotherapy at the University Hospital of Tübingen (Germany), a low-threshold online intervention programme for pregnant women was developed, scientifically evaluated, and further developed in accordance with the research results over several years. The intervention programme aims to support pregnant women who habitually consume alcohol and/or tobacco in their daily lives. IRIS addresses all women as it considers alcohol consumption during pregnancy per se as potentially harmful, independent of the medical categorisation of consumer behaviour outside of pregnancy. The intervention does not address women with alcohol addiction. The aforementioned project phase, IRIS Plus, served to better reach the target group (women who smoke or consume alcohol during pregnancy) by better

268  Handbook of sensitive research in the social sciences understanding the reasons and needs for consumption and adapting the IRIS platform accordingly. From the evaluation of the user data, it could be seen that pregnant women, in particular, who consume alcohol, are not adequately reached by our IRIS intervention programme. Therefore, the focus of our qualitative research was on the topic of ‘alcohol consumption during pregnancy’. Research team Our research team evolved and changed throughout the different steps of the research project. Overall, the initial data collection and analysis largely involved individuals who were working both clinically (as psychologists or physicians) and in research. A large proportion of women were represented, some of whom had already had children or could imagine having children in the future. The level of experience with qualitative research varied. Some researchers had already conducted qualitative interview studies, while others had no previous experience. The project management generally possessed a wealth of experience in scientific research, including the supervision of qualitative projects, but had no practical experience in conducting interviews or other forms of qualitative data collection. Study design The qualitative part of the study employed two data sources, namely, online forums and interviews. These were analysed independently using grounded theory methodology. The ‘online data corpus’ consisted of nine discussion threads with a total of 115 discussion participants from five different forums and blogs about alcohol consumption during pregnancy. The ‘interview data corpus’ consisted of seven semi-structured interviews with women who had previously stated that they had consumed alcohol during pregnancy. Recruitment and sampling Online data corpus The data corpus consisted of nine discussions from online forums in German on the topic of pregnancy. The online forums were openly accessible with discussion threads that were created and used by participants independent of our research project. We were among the silent readers of public content and did not write any contributions. The discussion threads that we included in the data corpus were selected based on theoretical sampling, as presented by Glaser and Strauss (Glaser et al., 1968). Accordingly, a first online research phase was initially carried out in order to gain initial insights and an overview of the relevant topics. The first threads selected from a highly frequented German mothers’ forum were analysed sentence by sentence and, at times, word by word. During this process, the first concepts for the prevailing mother images were developed, and at the same time, the researchers freely associated what might be missing in the (self-) representations in these threads. For example, it was observed that the women’s own needs and the role of their pleasure were either rejected or not discussed in these threads. It was assumed that an opposite attitude might be found in feminist forums. Therefore, in the next step, a search for forums with an explicitly feminist orientation was pursued, and a deeper search for threads on those forums concerning the subject of alcohol consumption during pregnancy was conducted. As a result, such discussions were also found in two feminist online forums. Based on this process, particularly relevant threads from different forums that contained many important aspects (such as top mother performance, a feminist view on pregnancy, or the attribution of the expert role to medical staff) and the

Researcher vulnerability: doing qualitative research in sensitive fields  269 controversial opinions of various discussion participants were selected discursively. In parallel to the analysis process of those first threads and the identification of the first relevant topic complexes, further threads were selected that depicted the topics as expanded or having contrary views. The selection aimed to present the broadest possible range of opinions. Additional threads were added to the data corpus during the entire analysis process until no new coding or relevant new aspects for the existing coding resulted from the additional threads viewed, that is, until theoretical saturation occurred (Charmaz, 2006; Conlon et al., 2020; Strauss, 1998; Strübing, 2014). Telephone interviews Recruitment for telephone interviews was integrated as part of an online survey related to perspectives on health in pregnancy, which had been conducted for the IRIS Plus project. The participants were asked whether they were available for a telephone interview that would address, among other issues, alcohol consumption and smoking during pregnancy. For recruitment reasons, telephone interviews were chosen to have access to participants throughout Germany and thereby recruit a larger pool of interview candidates. Telephone interviews were chosen as the use of telephones in Germany continues to be more widespread than other forms of virtual communication, such as video conferencing services. Furthermore, we presumed that telephone interviews would increase the sense of anonymity and thereby have a positive effect on the discussion of sensitive topics. In contrast to other forms of interviews (face-toface or digital) in which participants are visible to their counterparts via telephone, the risk of humiliation is minimised (Niederberger & Ruddat, 2012). As compensation for participation, 50 euros was offered. We contacted all participants who indicated that they had consumed alcohol during pregnancy, were willing to be interviewed, and provided an email address for contact with the research team. Thus, only four interviews, primarily with women who had consumed only during early pregnancy, came about in this way. As the analysis of the two data sources was carried out independently and the analysis of the online forums was already more advanced, we had some prior knowledge about the target group for the interviews. Namely, it was evident that there must also be women who actively, consciously, and out of personal conviction decided to consume alcohol during their pregnancy. Since recruiting via the online survey proved insufficient to reach this target group, other recruiting channels were chosen. Women who had consumed alcohol were specifically invited through postings in several Facebook groups. The search was explicitly for participants who had consumed alcohol after early pregnancy. In this way, we reached two additional women. One participant reported a one-time consumption of alcohol in pregnancy for reasons of pleasure, while the other participant reported consumption several times during the course of pregnancy, with the same motivation. In addition, a chance contact was established through a research workshop, which enabled private contact with a woman who had made a conscious decision to consume alcohol during pregnancy. This woman also agreed to take part in an interview. In the end, a total of seven semi-structured telephone interviews were carried out. Analysis The analyses of the data sets were carried out independently and according to grounded theory methodology (Charmaz, 2006; Glaser Barney & Strauss Anselm, 1967; Strübing, 2014). The steps of open, axial and selective coding were conducted via an iterative process, with interim results being regularly discussed in the research team (consisting of four psychologists

270  Handbook of sensitive research in the social sciences and two doctor) in order to ensure intersubjectivity and thus improve the quality of the interpretation. Here, agreements with and deviations from our ideas of the mother's role and of consumption and abstinence during pregnancy were identified. The goal was to integrate our knowledge as researchers and/or healthcare professionals and also our knowledge as mothers and/or feminists. The resulting tensions were examined more closely. Personal experiences of and reflections about pregnancy and motherhood also flowed into the discussions during the analysis. All efforts were made to benevolently question and understand the reasons and motives for alcohol consumption during pregnancy. This also occurred from a therapeutic standpoint, as most members of the research team had a psychotherapeutic background. In addition to the actual analysis, following the meetings, field notes were taken regarding observations of emotional involvement and the stressful feelings expressed by team members during the meetings. During the open coding phase, a small-scale interpretation of selected data sections was carried out by the research team to identify the phenomena and categories first. Individual passages were interpreted word by word, and the meaning of the linguistically fixed phenomena was discussed. As part of the axial coding, we identified connections between the categories step by step and enriched them by continuous comparison. We derived more global core phenomena from the initial codes during this process. To ensure a highquality analysis, selected text passages were discussed at weekly meetings with the research team and coded as a team. In addition, selected parts of the data material were discussed with outside researchers at various points during the analysis process in the ‘Research Workshop for Qualitative Methods’ at the Centre of Public Health and Health Services Research at the University Hospital Tübingen. The results of these discussions were then integrated into the further analysis process. During the steps of open and axial coding, the mother role or the ‘mother image’ emerged as the central concept for the theory formation. In this case, the ‘mother image’ is comprised of a normatively expected (self-) image and a definition of motherhood in relation to the social role of a ‘mother’. Through the process of analysis, the tension between autonomy, child welfare, and the (self-) image as a mother and the roles of these different aspects were determined to be central elements (Binder et al., 2021). Results On a content level, the results regarding possible reasons for alcohol consumption during pregnancy were published in a German-language journal (Binder et al., 2021). The results based on stigma and self-stigma in the context of alcohol abstinence recommendations during pregnancy have been published elsewhere (Binder et al., 2024). The research results from the methodological analysis comparing interviews and discussions from online forums as data sources have also been published (Binder et al., 2022). The latter article also addressed the burdens on researchers; however, it will be explored in more detail in this chapter. From a broader perspective of qualitative research based on the research project, this chapter will undertake the following questions: 1. What are the specific sources of possible stress when healthcare professionals conduct research in sensitive areas using qualitative methods? 2. What responsibilities do experienced researchers and superiors have in regard to minimising stress? 3. How could potential stress be mitigated to protect the mental health of researchers? 4. How can stress that arises be reflected upon and integrated in the sense of reflexivity?

Researcher vulnerability: doing qualitative research in sensitive fields  271 Role Conflicts In particular, the feeling of ‘wearing multiple hats,’ also known as role conflicts or role diffusion, can contribute to individuals feeling that they do not fully meet their own expectations. As a consequence, feelings of inadequacy or guilt arise. This chapter is about the role conflicts between healthcare professionals (therapists and medical doctors) and researchers. In the role of the researcher, this may be the feeling that they cannot offer participants what they actually need or that which is offered as a matter of course in the role of a therapist. Often, it is not related to the content of the data per se; rather, it is related to the researchers’ feelings of not being supportive, which seem to be experienced as a burden by the researchers. In the case of our study, judgement by others, women’s self-evaluation, shame, and feelings of guilt were factors that influenced the experience of burden. This observation, which was made during our research project, is explained further in the following section. The understanding of the role of a psychotherapist or doctor working in psychotherapy is characterised by a joint alliance between the therapist and the patient with the aim of improving the patient’s mental health. The concept of establishing a realistic collaborative relationship in the therapeutic process to achieve the effectiveness of psychotherapy was first described by Freud (1912). In his early writing, The Dynamics of Transference, Freud emphasised the importance of the patient bonding with the therapist to counteract the patient’s impulse to escape from the therapeutic process. In line with Freud’s views, Zetzel (1965) introduced the term ‘therapeutic alliance’ for the first time. Later, Gaston (1990) described this alliance concept as including four dimensions of the alliance: (1) the therapeutic alliance, (2) the working alliance, (3) the therapist’s empathic understanding and involvement, and (4) the patienttherapist agreement on the goals and tasks of treatment.The therapeutic relationship (1) refers to the patient’s affective relationship with the therapist. On the one hand, the induction of these positive effects in the therapeutic relationship depends on the natural sympathy between the individuals, but it also depends on an open and supportive attitude on the part of the therapist. The working alliance (2) describes the patient’s ability to work purposefully with the therapist during therapy. A trusting involvement is essential for the therapeutic process. This requires both a willingness to change on the part of the patient and the provision of support in the process on the part of the therapist. Dimension (3) primarily refers to the therapist. To forge a therapeutic alliance, the active involvement of the therapist through a relationship of sympathetic understanding with the patient is essential. Dimension (4) refers to the cognitive aspects of the alliance, namely a congruence between the patient’s and therapist’s beliefs about how people change in psychotherapy. This makes it possible to jointly define the therapeutic goals and the tasks that need to be accomplished in order to achieve them.The concept of therapeutic alliance is thus characterised by a benevolent, supportive attitude and shared goals to improve mental health. The induction and maintenance of the therapeutic alliance are largely under the responsibility of the therapist. It is important to know that the therapeutic alliance is not specific to one ‘type’ of psychotherapy and is, therefore, one of the so-called non-specific factors. The analysis of its effects has been the subject of numerous studies. For decades, the therapeutic alliance has been one of the most studied factors and has been found to greatly contribute to the success of psychotherapy (Baier et al., 2020; Flückiger et al., 2018). Accordingly, therapists are trained and accustomed to establishing and maintaining this alliance in their professional contact with patients.Another characteristic of psychotherapy is that patients are often accompanied on their path to recovery over a long period. Consequently,

272  Handbook of sensitive research in the social sciences there is a long-term agreement between the patient and therapist concerning the goals and tasks of the treatment, which can be renegotiated repeatedly throughout the therapy. In some respects, the attitudes and processes involved in the role of a qualitative researcher are contrary to this, while in other respects, there are similarities or at least overlaps in the roles. In the following, I will establish an analogy to the four dimensions of the therapeutic alliance concerning how these points arise in the relationship between a researcher and the participants, which is particularly relevant for interviews. Despite the short time involved, starting from recruitment, throughout the phase of conducting the interview, and during the conclusion of the interview, a certain alliance—here referred to as ‘research alliance’—also arises. While it differs in many respects from the alliance in the therapeutic setting, multiple examples are provided from our research project to illustrate similarities and points of divergence between the therapeutic alliance and the ‘research alliance’ and how these led to burdens for members of the research team. Analogous to the therapeutic alliance (1), an inner agreement and commitment between participant and researcher must be established in the research process. This is a prerequisite for open and respectful communication to occur during an interview. This is usually already considered when designing the research project. It is relevant, for example, when deciding on a specific type of data collection. Concerning the interviews, the format of the interview is of consequence. Different factors are involved with face-to-face interviews compared to those conducted via telephone or with a video conference tool. In the latter case, the image, that is, the, facial expressions of participants and researchers, is also transmitted, while via telephone, only the voices can be heard. In the project on alcohol consumption during pregnancy, previous unsuccessful attempts to recruit participants for interviews informed us that this sensitive topic makes a ‘research alliance’, for instance, participation in interviews, very challenging to realise. Therefore, for this project phase, the interview format was considered in order to establish how we could make it easier for participants to discuss the sensitive topic with researchers. In our study, telephone interviews were chosen for two reasons: first, people from all over Germany could be interviewed. Second, and even more importantly, to reduce the inhibition to participate due to the shameful and taboo nature of the topic. Therefore, it was assumed that participation would be facilitated when only the individual’s voice was audible. We assumed that without visual cues, there would be less risk of ‘losing face’, hence making an alliance possible. The research team also considered the need for an alliance when developing the guidelines for semi-structured interviews. We aimed to introduce the participant step by step to the relevant and sensitive questions about alcohol consumption during pregnancy. By doing so, we aimed to help participants become more candid regarding particularly personal, stigmatised or sensitive topics. In this research project, no burdens appeared to occur during the phases of study conception and guideline development. The development of the research design with a focus on the possible burdens on the participants, as well as the careful introduction of participants to sensitive topics, are most closely aligned with a patient-centred approach in psychotherapy. Therefore, as researchers, we assumed a protective and caring role in these phases, which closely resembles the role taken in psychotherapy. During the phase of conducting the interview, researchers used various communication techniques, particularly expressing encouraging noises, for example, to help create space for the interviewee to communicate. In our project, researchers who conducted the interviews described difficulty in limiting themselves to this area (striving to maintain an inner commitment from the participants to the research

Researcher vulnerability: doing qualitative research in sensitive fields  273 process). They expressed that extra effort was required to not employ dimensions three and four, particularly on a therapeutic level, as in a therapeutic alliance. Specifically, the difficulty arose from the aim toward neutral non-verbal communication, which is intended to create a ‘supportive’ interview climate without influencing the content of the interview. At the same time, however, the researcher was aware that no actual support for coping with the negative emotions (during the interview) would be provided and, therefore, may lead to burdens on the part of the researcher. Concretely, when participants expressed negative emotional states such as shame or guilt that occurred after consuming small amounts of alcohol or during accidental consumption, the researchers found it difficult to abstain from using interventions that might serve to relativise those feelings or to help cope with them. Particularly when the negative experience of these emotions and the possible reasons were explored in greater depth, researchers sometimes felt guilty after the interviews because they had initiated the discussion about unpleasant topics. This corresponds to an aspect of stress occurring in therapists who conduct psychotherapy, which has previously been reported in studies: preoccupation with the suffering of others can be particularly painful when the therapist is unable to modulate it (Råbu et al., 2016). While similar to therapy, personal sympathy also plays a role for the researcher conducting interviews, its relevance is considered rather subordinate since the perceived personal connection to a researcher is usually more neutral than to a therapist. In our project, in which the recruitment process primarily occurred by email, and the interviews were conducted via telephone, the significance of personal sympathy was less consequential. In the research context, there is a working alliance (2) that involves the participants’ trusting involvement in the research process while the researcher refrains from influencing the participants’ internal processes. Here, in the ‘research working alliance’, the participants are more concerned with aligning themselves with what is planned in the research process than with seeing themselves in a process of change. If, for certain reasons, a research alliance does not emerge and it remains unclear what the underlying reasons are, this can be challenging for researchers. In our research, there was a scenario in connection with recruitment in which no research alliance and, therefore, no interview could be achieved. In our study, recruitment was conducted via email. In some cases, the interview appointments were cancelled at short notice by email or the participants could not be reached by telephone at the agreed time. As a team, we assumed that after the people had initially agreed to an interview, they had consciously or unconsciously dealt with the underlying topic in the second step. It is reasonable to assume that the participants may have then realised that they actually did not want to talk about the topic. What was especially stressful for the research team was the feeling that the participants were distressed by efforts to establish a research alliance. Particularly, even after possible reasons were identified on an analytical level, on a practical level, it became evident that the behaviour of participants was inexplicable. For example, it remained unclear whether individuals discontinued participation because the confrontation was too intense and they then needed support regarding the stress that had arisen. In particular, ambiguity in conjunction with the feeling of being responsible for the stress was identified as the cause of the distress experienced by the research team members. The feeling of experienced responsibility, with the lack of ability to alleviate or help reduce suffering, is also known to cause stress to therapists (Råbu et al., 2016). Dimension (3), understanding and involvement, is particularly contradictory between therapeutic and research alliances. Perhaps the particular tension arises from the fact that

274  Handbook of sensitive research in the social sciences understanding is a central element in both therapeutic and research contexts, while involvement is only permissible in the therapeutic context. In the research interview, we asked questions about our research subject and invited the participants to explain their thoughts and views in detail. However, in the setting of a qualitative interview, the researcher cannot be involved, as a neutral position is required. Regarding the sensitive topic of alcohol consumption during pregnancy, participants expressed feelings of guilt, self-deprecation, or the like during the interview, which, in turn, was difficult for the researchers as they could not employ the usual therapeutic interventions. The inability to become involved and provide therapeutic help seemed to be a concern for the team members—despite the fact that the topics confronted during the interview represent usual topics in the therapeutic setting. Ultimately, the experience of understanding the participants’ inner psychological problems without the possibility of providing support actively appears to be the underlying stress factor. Regardless of the offer to partake in counselling if the need arose in relation to the interview, participants in our study did not utilise the opportunity. This could suggest that psychological aspects such as feelings of guilt or self-devaluation in the context of the research alliance do not represent a major burden for the participants. For the researchers, however, the perception of this aspect, in combination with maintaining the neutral role as researchers was experienced as stressful—particularly because no therapeutic support could occur during the interview and was not requested by the participants afterwards. As a result, some of the researchers reported feeling unsatisfied and had negative feelings after the interview. Dimension (4), agreement on the goals, is another point with clear differences between the research alliance and the therapeutic alliance. While in psychotherapy, the goal is explicitly to achieve changes to improve mental health, whether there is actually a common goal in the research process is more ambiguous. For researchers, the goal during the interview is to collect data to serve the scientific purpose of generating an abundance of information. The goal in the further process is to answer a research question and, in the area of mental health research, it is often about directly or indirectly improving care in the long term. When pursuing our goals as researchers, especially in research on sensitive topics, ethical aspects are always taken into account in the sense of avoiding harm to the participants. A blurring of the therapeutic and research alliance can also occur because, beyond the principle of ‘do no harm’, researchers unconsciously feel compelled to improve mental health as part of the joint interaction. The notion of reciprocity, the need to give something back to participants, is an ethical issue that often arises in qualitative research projects regarding the responsibility of researchers (Sterie et al., 2023; Tubaro, 2021). There are different levels at which reciprocal efforts can take place: the micro (individual), meso (community, the local health facility), or macro (societal (or health) policy) levels (Bronfenbrenner, 1979). Researchers’ endeavours at the meso and macro levels are often realised via a long-term perspective. At the micro level, different objectives within the framework of the research alliance lead to researchers feeling as if they can give nothing back to the participants. The reasons and goals for participation in a qualitative study can be manifold. Some participate because of the money offered, others participate due to altruistic reasons, such as wanting to support research in general, while others may aim to contribute to improving the healthcare situation for certain groups or topics. A less likely motivation would be to improve the participant’s mental health, as the participants are informed that an interview or similar research situation does not correspond to psychotherapy. Researchers must, therefore, be aware of their role as they should not slip into the role of a therapist. Even while the desire to help on an individual level may arise, especially among

Researcher vulnerability: doing qualitative research in sensitive fields  275 novice healthcare professionals or students, ultimately, the participants’ agenda was the interview and not to seek help. Negative emotions can result when the professional maintains the role of a researcher, as feelings of inadequacy may arise. The distinction between the individual dimensions of the therapeutic and research alliances, according to Gaston (1990), may seem artificial at some points, especially since they merge into one another in many aspects. Nevertheless, while the extent of stress may not seem particularly dramatic at first glance (that is, in contrast to content about trauma), addressing specific sources of possible stress in detail has value when considering the cumulative effect of the encounters from the entire qualitative study. Vulnerability in Interaction and Without Interaction The previous section dealt in particular with possible stresses that can arise in the context of direct interaction with individuals who voluntarily decided to take part in an interview for research purposes. It could be assumed that without direct interaction and without active generation of data for research purposes, the sources of stress would be eliminated. However, I will show that even without interaction—in the context of the model of fluid vulnerability—other potentially stressful factors can arise that should be considered. Our project collected data from online discussions on the topic of alcohol consumption during pregnancy, which arose completely independently of the research process. This means that forum participants revealed information about their alcohol consumption, associated fears, worries, and thoughts on the matter. The online discussion was multifaceted, so that in addition to friendly comments, negative or even strongly derogatory reactions were not infrequent. Since the text contributions of the discussion participants were sometimes very short, the analysis using grounded theory methodology required a small-step approach, which in many instances involved intensive examination of the data material. It was an integral part of the analysis to think about what people wanted to express with their posts, how they felt about themselves, or what feelings might be triggered in others – for example, in the creators of the threads that brought up the topic of consumption. It is important to consider the difference in goals between participants in such a forum and participation in the interviews in our study. In our study, participants were aware that they were taking part in research, and the focus was not to seek support to improve their own mental health. This contrasts with the online forums in which individuals write about their concerns and worries and often request information or help from the online community. Particularly in forums regarding alcohol consumption during pregnancy, in which there was little support and a great deal of stigmatisation, members of the research team reported strong emotional reactions. This included feeling compassion for those who sought advice but received rejection and devaluation. It also included anger and lack of understanding towards individuals who commented in a harsh or judgemental manner. During the joint analysis sessions, the emerging emotionality in the team members could usually be well-handled through reflection and transformed into new analytical approaches. At the same time, dealing with the material also resulted in unanswerable questions. Some examples include: how could the person seeking advice deal with the many negative answers? Did she receive the help and support she needed elsewhere? According to the model of fluid vulnerability, stress can also arise for researchers in this context. Tension and stress can arise at the unconscious level in particular. One of the reasons for this is that the helping role of mental health professionals cannot be utilised to the desired extent while they are in the role

276  Handbook of sensitive research in the social sciences of researchers. In addition to ‘not being able to act in a supportive manner’, ‘not knowing’ the outcomes can also lead to stress and negative emotions among researchers. Responsibility and Recognition of Vulnerability Researcher vulnerability, emotional involvement, and stress are recognised in high-stress research areas such as traumatic events, trauma, or PTBS (posttraumatic stress disorder) (Campbell, 2013; Dickson-Swift, 2022; Miralles et al., 2022; Stoler, 2002). In these fields, the related stress is often more openly acknowledged, for example, by supervisors, while stress arising from other research topics may not be recognised or taken seriously. In my own experience, these lesser-known topics associated with stress induction for researchers performing qualitative research have not yet gained the needed attention. In a large research project concerning women from northern Iraq who were traumatised in IS captivity (Binder et al., 2020; Denkinger et al., 2018; Tran et al., 2021), it was evident that the researchers were burdened by the research process. In the context of this study, I conducted my doctorate and was a novice in the field of qualitative research. As such, collegial intervision (a method for processing concerns from a professional context at a peer level without an external specialist) and external supervision were offered. These forms of support become especially meaningful when an experience of stress is disregarded or not sufficiently taken into account. This is more likely to occur with more subtle distress and topics that are not considered highly stressful per se. In the context of the above-mentioned project, a lack of acknowledgement could be due to the fact that supervisors did not have extensive experience in actually collecting and analysing qualitative research data. This negates the experience of the range of emotions that data collection and analysis can trigger in oneself, regardless of the topic and professional background. In the case of mental health professionals, they do neither recognise nor feel the dual role, as they are more distanced and, therefore, less emotionally involved in the research process. Accordingly, from a more distanced perspective, it may be assumed that topics which do not lead to stress in the therapeutic setting would not lead to stress in the research context. This perspective is reasonable when the role of diffusion described above is not taken into account. At the same time, the normalisation of psychological stress in the entire field of healthcare (which is still present in the German health system) can also contribute to the fact that psychological stress among staff (clinical and research) is not sufficiently recognised and acknowledged. According to the results presented above and to the reflections of other researchers on the topic of researcher vulnerability (Sterie et al., 2023), discussion of roles and possible role diffusions by supervisors could have constructive outcomes (see Chapter 4). Most studies regarding researcher vulnerability focus on the level of experience of the researchers and primarily examine the outcomes for inexperienced researchers. Not yet explored—especially assuming a model of fluid vulnerability—is that not only experience level but also many other aspects can lead to researcher vulnerability in research interactions. This means that more attention is required beyond inexperienced colleagues or explicitly stressful research topics. To this end, it is essential to normalise conversations about stress and to acknowledge possible sources and experiences of stress in the context of research.

Researcher vulnerability: doing qualitative research in sensitive fields  277 Accept the Challenge and Seize the Opportunity: Talking About Emotions and Stress Reflexivity is an important part of qualitative research. This involves reflecting on the research process and trying to understand what influence one’s own values and attitudes have on the conclusions reached. This is essential to achieve credibility and rigour in any type of qualitative research (Jootun et al., 2009). The capacity to provide space for one’s own vulnerability in the process of reflexivity is essential in order first to recognise it. Mental health professionals are often idealised (by themselves and others) as competent, empathetic individuals with the goal of helping others. Negative aspects such as stress caused by compassion and stress in the field of mental health, but also developments such as compassion fatigue over time, are often taboo topics (Norrman Harling et al., 2020). This can lead to one’s own vulnerability being neglected when reflecting on the research process. Experienced researchers could be given the task of explicitly adapting the fluid aspects of vulnerability into the process in order to help normalise attitudes. Unfortunately, within the current university structures in Germany, where research is conducted by mental health professionals, this approach in a research team would be difficult to achieve. Researchers who use qualitative methods often work in relative isolation in one of the following scenarios: (1) there is a supervisor; however, their experience in the actual implementation of qualitative research is minimal or null; (2) there is a research team, but only one member is solely responsible for the qualitative research, for example, in the context of a mixed methods approach; or (3) qualitative research is conducted outside of large, prestigious projects. As a result, the small group of researchers work on their small projects in relative isolation. Research workshops for qualitative methods are particularly important to ensure a rigorous approach to research in the scenarios just mentioned. In the format of research workshops for qualitative methods, there is the opportunity to exchange ideas with others who have experience in qualitative research practice and to discuss one’s own vulnerability. Specifically, in the context of this format, the opportunity should exist to express unpleasant feelings and report experiences of stress without being disregarded, ridiculed, or judged as not being resilient. By establishing an atmosphere of openness and trust in the group of researchers, reflection on the emergence of vulnerability and the connections with the research subject can be used productively. On the one hand, this can ensure quality and rigour in the data analysis. On the other hand, it can contribute to maintaining one’s own mental health through reflection, especially on a metalevel of the research process and in regard to the associated, often unconscious, vulnerability.

CONCLUSION AND FUTURE DIRECTIONS As healthcare professionals, doing qualitative research on sensitive topics brings various, sometimes stressful challenges, such as role conflicts and inherent vulnerability during interactions with participants and the intensive analysis of the data material. Belonging to healthcare professionals as a group can lead to the risk of normalisation, as an approach to dealing with possible stressful circumstances could minimise or compartmentalise one’s own emotional responses and thereby inadvertently create an atmosphere of taboo related to such topics. As this particularly affects novices in this field, such as medical or psychology students, supervisors have a special responsibility to address and counteract this. Nevertheless, as described above, this also applies to experienced researchers, as being in a vulnerable position

278  Handbook of sensitive research in the social sciences during the research process is not restricted by the level of experience. The challenge is that supervisors may be experienced in the areas of clinical care and quantitative research while at the same time being less aware of the special challenges in the field of qualitative research. The aim of this chapter was, therefore, to draw attention to possible concealed sources of stress and to encourage researchers to address the need for taking responsibility and promoting mental health for everyone involved in the research process. Importantly, consistent with and based on the tradition of qualitative enquiry and our experiences, the value of reflecting on one’s own position and responsibility in relation to the research team is crucial to reducing stress and uncovering unequal power dynamics. Researchers can benefit from this as it enables them to address and reduce their own burdens and, at the same time, contribute to the quality of the reconstruction of research results in the sense of reflexivity. Research workshops for qualitative methods can offer a suitable and safe format to enable reflection on researcher vulnerability and the corresponding significance for the research process. Healthcare professionals seeking to engage in research on sensitive topics can benefit from using the following critical questions to support reflection: • • •

Which conditions should be included in the planning and financing of a research project in order to provide space and guidance for reflecting on the possible burdens? Is there a format for open exchange with other qualitative researchers, such as a Research Workshop for Qualitative Methods? How can I use my role in the research team or in such a format to ensure that burdens are openly discussed and reflected upon?

As mental healthcare professionals conducting qualitative research on sensitive topics, consciously reflecting on researcher vulnerability in the research process can provide both important scientific insights and simultaneously a path to deeper insights about oneself as an individual with multiple roles.

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280  Handbook of sensitive research in the social sciences Poppelreuter, S. & Mierke, K. (2008). Psychische Belastungen am Arbeitsplatz. Ursachen, Auswirkungen, Handlungsmöglichkeiten, 2. Råbu, M., Moltu, C., Binder, P.-E., & McLeod, J. (2016). How does practicing psychotherapy affect the personal life of the therapist? A qualitative inquiry of senior therapists’ experiences. Psychotherapy Research, 26(6), 737–749. Serry, T. & Liamputtong, P. (2022). The in-depth interviewing method in health. In P. Liamputtong (ed.), Research methods and evidence-based practice (4th ed.) (pp.76–92). South Melbourne: Oxford University Press. Sikic Micanovic, L., Stelko, S., & Sakic, S. (2019). Who else needs protection? Reflecting on researcher vulnerability in sensitive research. Societies, 10(1), 3. Sterie, A.-C., Potthoff, S., Erdmann, A., Burner-Fritsch, I. S., Oyine Aluh, D., & Schneiders, M. L. (2023). Dimensions of researcher vulnerability in qualitative health research and recommendations for future practice. International Journal of Qualitative Methods, 22. https://doi​.org​/10​.1177​ /16094069231183600. Stoler, L. R. (2002). Researching childhood sexual abuse: Anticipating effects on the researcher. Feminism & Psychology, 12(2), 269–274. Strauss, A. L. (1998). Grundlagen qualitativer Sozialforschung: Datenanalyse und Theoriebildung in der empirischen und soziologischen Forschung. 2. Auflage. Stuttgart: UTB. Strübing, J. (2014). Was ist Grounded Theory? In R. E. White & K. Cooper (eds), Grounded theory (pp.9–35). Cham: Springer. Tran, V. M., Fozouni, L., Denkinger, J. K., Rometsch, C., Junne, F., Vinck, P., & Pham, P. (2021). Factors influencing utilization and perception of health care: a qualitative study among traumatized Yazidi refugees in Germany. BMC Psychiatry, 21, 1–12. Tubaro, P. (2021). Whose results are these anyway? Reciprocity and the ethics of “giving back” after social network research. Social Networks, 67, 65–73. Velardo, S. & Elliott, S. (2021). The emotional wellbeing of doctoral students conducting qualitative research with vulnerable populations. The Qualitative Report, 26(5), 1522–1545. West, C. & Zimmerman, D. H. (1987). Doing gender. Gender & Society, 1(2), 125–151. West, C. & Zimmerman, D. H. (2002). Doing gender. In S. Fenstermaker & C. West (eds), Doing gender, doing difference: Inequality, power, and institutional change. Routledge. World Medical Association (WMA) (1964). Human experimentation. Code of ethics of the world medical association. Declaration of Helsinki. British Medical Journal, 2(5402), 177. Zetzel, E. R. (1965). The theory of therapy in relation to a developmental model of the psychic apparatus. The International Journal of Psycho-Analysis, 46, 39–52.

20. ‘Nothing about us without us’: researching sexual and reproductive health with priority populations Judith A. Dean, Olivia Hollingdrake, James A. Fowler and Sarah Warzywoda

INTRODUCTION Sexual and reproductive health (SRH) research is often considered sensitive research because it involves the exploration of topics that may be personal, emotionally charged or compromising (Silverio et al., 2022). Qualitative methodologies can be used to gather nuanced information safely and effectively about people’s attitudes, perceptions, experiences and actions related to sex and broader SRH. This deep and contextualised insight into people’s ‘ived experience is rarely captured by quantitative research (Silverio et al., 2022). Whilst quantitative research can reveal the number of people engaged in certain SRH-related behaviours, qualitative approaches can provide an in-depth understanding of the ‘why and why not’ from the perspective and context of participants’ own lived experiences (see Chapter 1 in this volume). Conducting qualitative SRH research can raise topics that, in many contexts, are considered socially or legally unacceptable, presenting researchers with ethical and operational challenges (Dean et al., 2012). A key strategy to addressing these challenges is always to remember the saying ‘Nothing about us without us’. In practical terms, this means individuals and communities with ‘ived experience of the topic or phenomenon being explored in the research are leading and/or are meaningfully involved throughout the research process. This strategy is particularly important to consider when exploring SRH with communities experiencing social inequality, criminalisation, discrimination, and health inequities, referred to in this chapter as priority populations. These communities and people who identify with and live in these communities are often referred to as vulnerable, at risk or marginalised (see Chapter 1), but we argue that researchers have a responsibility to shift the research agenda away from this deficit-based, value-laden language that places blame solely on the individual or community. We need to focus on the broader social determinants of health that influence SRH and prioritise these in research agendas, policy, and practice. This chapter focuses on the qualitative exploration of SRH-related topics with priority populations, highlighting the benefits of community-based participatory approaches—Nothing about us without us. In particular, it will discuss the following points: 1 . 2. 3. 4.

Sexual and reproductive health as sensitive research. Priority populations and the concepts of vulnerability and at risk. Understanding the lived experience. Using qualitative approaches to amplify community and consumer voices. 281

282  Handbook of sensitive research in the social sciences 5. Building community connections. 6. Researcher reflexivity and positionality. 7. Sensitivity to the needs and lives of participants.

SEXUAL AND REPRODUCTIVE HEALTH AS SENSITIVE RESEARCH The World Health Organisation (1975) defines sexual and reproductive health as more than just the absence of disease, dysfunction, or infirmity to incorporate the ‘... integration of the somatic, emotional, intellectual and social aspects of the sexual being’. Sexual and reproductive health (SRH) considers how people behave and respond to the complex and intersecting issues encountered whilst navigating their life course. Individual biological, psychological, and cognitive factors influence this journey, as do the social, cultural, religious, and environmental contexts in which people live and learn. There is no single definition of SRH because meanings vary between individuals and broader society and across countries, cultures, and political and legal paradigms (Sandfort & Ehrhardt, 2004). Despite this variability, SRH is widely considered a sensitive topic to research. Sieber and Stanley (1988) describe ‘socially sensitive’ research as research that has potential negative consequences, either for the participants in the research or the class of individuals represented by it (see Chapter 1). This broad definition calls for researchers to consider the ethical challenges posed by SRH topics, including the potential for physical or psychological threats to individuals involved or the communities they belong to (Mallon & Elliott, 2021). However, historical and ongoing social, cultural, or religious condemnation and censorship mean that many SRH topics are avoided or forbidden (Crespo-Fernández, 2018), positioning them as private, emotional, or taboo. Although attitudes around sex have progressively relaxed in some contexts, the sensitivity of SRH research is still attributed to the sensitivity of the topic as perceived by the researchers, participants, and the broader social and structural context in which the research is being conducted (Mallon & Elliott, 2021). These perceptions, based on local sociocultural normative beliefs and practices, along with local legislations and ethical guidelines, deem some areas of SRH research as too sensitive to countenance (Dean et al., 2012). This avoidance leaves questions stemming from communities experiencing marginalisation, criminalisation and discrimination unanswered, which in turn leaves gaps in understanding of how to address the SRH inequities experienced by these communities.

PRIORITY POPULATIONS AND THE CONCEPTS OF VULNERABILITY AND ‘AT RISK’ Communities experiencing social and health inequities—preventable, unjust systemic differences in health status (Arcaya et al., 2015)—are often referred to as ‘vulnerable’, ‘at risk’ or ‘marginalised’ (see Chapter 1). The concept of vulnerability is nested in the belief that individuals or groups exposed to certain influencing factors are vulnerable or at risk of greater harm and negative outcomes than others (Delor & Hubert, 2000; see Chapter 1). Vulnerability can be influenced by individual characteristics such as age, gender, and behaviours, along with their intersection with social determinants of health such as money, food, shelter, healthcare access, and education, and their relationship with broader community, society, and

‘Nothing about us without us’: researching sexual and reproductive health  283 system-level context and environmental factors (Arcaya et al., 2015). SRH vulnerability occurs when people are unable to enact these SRH rights, leading to life experiences that place them at greater risk of negative SRH outcomes, such as acquiring sexually transmissible infections (STIs), experiencing an unintended pregnancy, or being exposed to sexual exploitation and violence. People can, however, be considered more susceptible to SRH harm or injustice because they belong to a group or community that experiences social inequities, marginalisation, or discrimination. This can include communities such as the LGBTQIA+ (Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual, plus additional gender, sexual and romantic minority identities) community (Smith & Newman, 2023) people with refugee and migrant backgrounds, and people living with Human Immunodeficiency Virus (HIV) (AIDS United & US People Living with HIV Caucus, 2021). Other populations or groups of people that have been labelled as vulnerable in regard to SRH include women (Marsh et al., 2017), children and young people (WHO, 2021), sex workers (Berg et al., 2022), people who use illegal drugs (Jürgens, 2008), people in custodial settings or with a history of incarceration, people with disabilities and cognitive impairments, people living with mental illness, and Aboriginal and Torres Strait Islander peoples (Bell et al., 2017) and other First Nations peoples around the world (see the chapters in Part III in this volume). It is important to acknowledge that some people and the communities with which they identify or live within can face an increased risk of experiencing negative SRH outcomes. However, framing individuals and whole communities using descriptors such as vulnerable, at risk or marginalised serves to compound the negative, deficit-based discourse surrounding them. All-encompassing deficit-based, value-laden terms such as ‘vulnerable’ can result in individuals, and the communities with which they identify, experiencing further discrimination and stigmatisation, along with ongoing SRH inequities. For example, SRH research involving Aboriginal and Torres Strait Islander peoples has inherently perpetuated a deficit problem-orientated narrative linking the SRH inequities experienced by Aboriginal and Torres Strait Islander peoples to higher rates of risky behaviours and poor knowledge (Martin et al., 2023). With this focus, other crucial factors, such as the enduring impacts of colonisation, inequitable access to culturally safe and responsive healthcare, and racist policy, tend to be dismissed (Martin et al., 2023). Focusing on deficits implies that either the individual or the whole community is the problem, and it can link aspects of an individual’s identity (whether that be sexuality, gender, or culture) as part of a particular ‘at risk’ group without acknowledging fundamental and systemic inequalities that drive people’s potential (Marsh et al., 2017). This discourse neglects to recognise the many strengths, protective factors, and harm minimisation strategies that exist within communities of people, and the agency that individuals enact in managing sexual and reproductive risks and choices in their day-to-day lives (Martin et al., 2023). Communities that are framed as vulnerable are also often labelled ‘hard-to-reach’ (Dean et al., 2012; Sokol et al., 2015). This labelling places the onus on individuals and communities to make changes so that they can engage in research, rather than compelling researchers to change their ways of practising to bridge the gaps caused by marginalisation and discrimination. Using the terms ‘priority’ or ‘key’ populations serves to shift focus to a social justice or strength-based lens that considers the social determinants of health. Strength-based approaches counteract the dominant and damaging assumption that individuals and communities experiencing negative SRH outcomes must be the ones at fault or the problem (Bell et al., 2017; Gharabaghi & Anderson-Nathe, 2017). Strength-based research emphasises the need

284  Handbook of sensitive research in the social sciences to understand the complex and coercive systems that influence people’s sexual and reproductive lives. This approach also shifts the onus of responsibility to the researcher to move the focus of their research beyond problem identification and conduct their study in a way that is inclusive of individual and community needs. To do this safely and effectively, researchers need to understand the lived experience.

UNDERSTANDING THE ‘LIVED EXPERIENCE’ A person or people who have personal experience of the topic or phenomenon being explored in the research are considered someone with lived experience. A group of people sharing a common lived experience, interest, or background (cultural, religious, economic, social, political), or health-related issue is collectively considered a community, for instance, people living with HIV, or the LGBTQIA+ community. Individuals with lived experience are also referred to as consumers: people who access a service or product (patients, potential patients, carers), organisations representing consumers’ interests, members of the public who are targets of health promotion programmes, or who are the focus of research (McKenzie & Hanley, 2007; National Health and Medical Research Council, 2018). Understanding people’s lived SRH experiences—the contexts and circumstances in which they enact their SRH lives—is essential to identifying the social and structural determinants underpinning their SRH knowledge, attitudes, beliefs, decision making, and behaviour. Some factors influencing SRH, such as the incidence and prevalence of STIs and HIV, condomless sex, number of sexual partners, or treatment adherence, are easily identified and measured. However, many are subtle or hidden, including reproductive coercion, racism, discrimination, and other forms of verbal and emotional abuse or victimisation. Qualitative methodologies provide the means to explore and understand the range of complex intersecting factors influencing the SRH lives of people. Qualitative research that seeks to understand people’s SRH lived experiences helps determine priorities for public health programmes that meet the needs of individuals and communities experiencing inequities (Sokol et al., 2015). To conduct this research in a way that is gender, sexuality and culturally safe, affirming, and responsive, researchers must acknowledge, respect, and understand the lived experience of their participants; they also need to use approaches that amplify the voices and priorities of those with lived experience.

USING QUALITATIVE APPROACHES TO AMPLIFY COMMUNITY AND CONSUMER VOICES Engaging communities and consumers in qualitative research can elicit an understanding of complex and intersecting social, political, and historical factors that influence SRH (Busetto et al., 2020). Methods such as interviews, focus group discussions, and ethnography are effective tools to explore SRH knowledge, attitudes, and beliefs (Dean et al., 2016), factors influencing the wellbeing and rights of priority populations (Brennan et al., 2023; Fowler et al., 2023; Heard et al., 2019; Hollingdrake et al., 2022; Martin et al., 2023; Warzywoda et al., 2023) and the influence of SRH-related social norms in cross-cultural contexts (Alam et al., 2022; Dean et al., 2016).

‘Nothing about us without us’: researching sexual and reproductive health  285 Qualitative approaches are often situated as a way of giving a voice to participants (Spencer et al., 2020), but this can also be considered deficit-based terminology, implying that the participants had no voice or agency of their own prior to participating in research. For example, Spencer et al. (2020) highlight the importance of listening to children and young people on matters relevant to them but suggest the continued use of the term ‘giving them a voice’ reinforces negative discourse and perception of children and young people as the problem and at risk, thereby keeping the power with the researcher. Failure to consider the power relations between young people and researchers, and the adult-controlled world in which young people are living and exploring their sexual selves, will influence findings arising from research (Spencer et al., 2020). Reframing qualitative approaches as the tools through which community and consumer voices are amplified helps to shift this deficit narrative and redress power imbalances. Qualitative research can validate that stories are heard, privileged and interpreted within the context of people’s SRH lived experience (Liamputtong, 2020). Critically reflecting on language and the ways that dominant, deficit-based discourse can influence participants’ willingness to share, what they say, and how their stories are told is essential. Fostering a safe research environment that supports participants in sharing their experiences will help generate dialogue about issues of importance to them. Taking a strengthbased approach throughout the research process also gives participants agency to decide how they and their communities want to be constructed and represented in research outcomes (Gharabaghi & Anderson-Nathe, 2017; Smith & Newman, 2023). Considering a topic sensitive or a community hard-to-reach may reflect the researcher’s limited understanding of the lived experience of their target population and their lack of community connections, engagement, trust, and rapport (Dean et al., 2012). Collaborating with and consulting communities is pivotal to ensuring that SRH research is gender, sexuality and culturally safe, affirming, and responsive to the unique needs and context of the community and that it generates knowledge and understanding that is useful for the community. Building community connections and ensuring research is led by or actively involves people with lived experience offers a way of ensuring that the stories and lived experiences of priority populations are not silenced or misinterpreted.

BUILDING COMMUNITY CONNECTIONS: ‘NOTHING ABOUT US WITHOUT US’ ‘Nothing about us without us,’ a saying that came into common use in disability activism during the 1990s (Charlton, 1998), is now widely used by other groups experiencing marginalisation, stigma, and discrimination due to their lived experience (AIDS United & US People Living with HIV Caucus, 2021; Berg et al., 2022; Jürgens, 2008; WHO, 2021). In research, ‘Nothing about us without us’ means that people with lived experience of the topic or phenomenon being explored have meaningful involvement throughout the research process (Suarez‐Balcazar, 2020). This involvement promotes meaningful conversations that generate evidence on topics that matter most to the participants and the community with which they identify. Community-based participatory research (CBPR) describes ways of doing research that meaningfully include leadership from, involvement of, and/or partnership with people who are traditionally the subjects of research (Israel et al., 2012) that is, ‘Nothing about us without us’.

286  Handbook of sensitive research in the social sciences The expertise of the researchers is valued, but community perspectives and experiences are privileged throughout the research process. CBPR recognises the community as central to the research process, and the research is driven by the priorities of the community (Liamputtong, 2010, 2020). Community members involved as active CBPR team members can improve selfefficacy and develop lifelong skills. Using this mutually beneficial approach when exploring SRH with priority populations ensures that they are active agents in telling their story, and it also helps to build capacity within these communities to set the future research agenda so that it drives community-led responses to the SRH inequities they are experiencing. CBPR also offers an approach that helps identify the social constructs, identities, and social and sexual networks that exist within different communities, including power relationships or community dynamics that may influence their SRH and rights, and their involvement in research as collaborating partners or participants. As Smith and Newman (2023) highlight, collaborating with LGBTQIA+ communities can help researchers understand the differences in knowledge, attitudes, practices, and sexual networks that exist within and across LGBTQIA+ communities. Understanding the sub-cultures and groups that live and identify with the population under enquiry when conducting SRH research is important, as nuances may be missed or misinterpreted if the community is considered a homogeneous collective based on age, identity (cultural, sexuality, and gender), appearance, experience, or their patterns of sexual and reproductive behaviour (Dean et al., 2012). Active involvement of community members also provides a means of early identification of potential social and/or cultural sensitivities, taboos, or past experiences that may hinder community connection, and community-led guidance on how to address any ethical, methodological, or logistical issues that may arise. Box 20.1 provides an example of best-practice CBPR. BOX 20.1 EXAMPLE OF GLOBAL BEST-PRACTICE CBPR CBPR methods have been widely used in the HIV field for decades. The Greater and more Meaningful Involvement of People Living with HIV in research (GIPA/MIPA) was first articulated in the Denver Principles in 1983 to ensure that the wisdom, strength, and resilience of people living with HIV were not disregarded in the pursuit of new knowledge but remained central in informing the aims, outcomes, and potential benefits of any research involving them. The GIPA/MIPA principles continue to be endorsed by UNAIDS and many community-based organisations representing people living with HIV around the world (AIDS United & US People Living with HIV Caucus, 2021; Rule et al., 2020). The meaningful involvement of people living with HIV embodies mutual respect, mutual responsibility for research outcomes, and a willingness to share power and control. Establishing a sense of trust through open and respectful dialogue between the researcher and participants is a core component of building community connections when conducting sensitive SRH research among priority populations (Brondani et al., 2012). Without a sense of trust between the researcher, their community partners, and the research participants, it is generally not possible to develop meaningful partnerships with the community and a research approach reflective of the participants’ sociocultural reality. Dean et al. (2012) posit that the

‘Nothing about us without us’: researching sexual and reproductive health  287 challenges of conducting sensitive research with priority populations can be addressed with careful planning and close community collaboration. Box 20.2 provides an overview of the study by Dean et al. (2012) that applied CBPR principles to explore the SRH experiences of young people from refugee backgrounds living in Australia. BOX 20.2 EXAMPLE OF APPLYING CBPR PRINCIPLES TO EXPLORE SRH EXPERIENCES The objective of this study by Dean et al. (2016) was to generate understandings of the intergenerational sexual health knowledge, attitudes, beliefs, and behavioural expectations among the Sudanese community in Queensland, Australia. The study involved interviews and focus groups with a predominantly refugee background community, many of whom may have had an existing mistrust and fear of research and were reluctant to share their lived experiences with other community members and government services. Fostering a sense of trust was essential to exploring a topic considered culturally taboo to the participants and the broader Sudanese community (Dean et al., 2016; Dean et al., 2012). This was facilitated by developing a collaborative, active partnership with the peak community organisation representing the needs and goals of multicultural communities in Queensland and the Sudanese Community Association. The research team also engaged with several informal social clubs and attended a range of community and youth-specific events throughout the study process. Following consultation with the study partners and the informal network of community contacts, a study reference group was established comprised of community leaders, parents/carers, and youth leaders. Two peer researchers, community members of the same age as the young people being recruited, were employed. The community-inclusive nature of the methodology adopted for this research provided a sense of safety and trust between the participants and the research team. Having a champion to help steer and advocate for the ongoing meaningful involvement of people with lived experience throughout the research process is essential. Identifying these champions and building trust with them can foster critical relationships within the participating community. This is especially important for priority populations with past negative experiences with research or who fear their privacy and confidentiality could be breached. In recognition of this, funding agencies and organisations in many countries require researchers to demonstrate community or consumer involvement at all stages of the research (National Health and Medical Research Council, 2018). Community-based non-government agencies and peer-led organisations (organisations led and staffed by people with the same or similar identities or lived experiences as their service users) can provide a link between researchers and community members. They can also facilitate community representation by identifying key community members to become investigators, co-researchers, and/or peer researchers or by nominating staff or affiliated community members to join study advisory/reference groups or steering committees (McKenzie & Hanley, 2007; Suarez‐Balcazar, 2020). Community organisations also provide invaluable guidance for the dissemination of findings in ways that will contribute to the implementation

288  Handbook of sensitive research in the social sciences of meaningful policies and programmes that are relevant and responsive to the people with lived experience they represent.

RESEARCHER REFLEXIVITY AND POSITIONALITY This section highlights the importance of researcher reflexivity and positionality, as well as some of the ethical considerations and sensitivities researchers need to consider, specific to SRH research with priority populations. Undertaking qualitative SRH research can present personal and professional challenges for the researcher. The topic under examination may resonate with the researcher’s own lived experience, making it challenging to remain neutral or unbiased regarding the private, intimate, or distressing aspects of the participants’ lives being discussed (Marsh et al., 2017). To acknowledge the researcher’s influence in qualitative research and ensure the integrity, transparency, and trustworthiness of data, qualitative researchers use a process of reflection or reflexivity. Reflexivity requires a researcher to acknowledge biases generated by their gender, age, social, political, cultural, and linguistic background and/or identity, and consider the impact these factors and their experiences may have on their stance throughout the research (Joseph et al., 2021). Through this process, the researcher aims to make their influence on the research known to themselves and their wider audience (see Chapter 1). For sensitive research involving priority populations, researchers must reflect on their position in the research (Ogilvie et al., 2008). Ongoing cyclic reflection is essential to identify and reflect on preconceived perceptions, including the ways that a researcher’s personal and professional background and inherent privileges may influence their interaction with participants or create power differentials. For example, consider a cisgender straight woman conducting research with gender and sexuality diverse young people, or non-Indigenous researchers working with First Nations peoples. Researchers must recognise and report the ways that their positioning (insiders-outsiders status) could influence the ways of engaging with participants and how data is collected, analysed, interpreted and disseminated. Box 20.3 is an excerpt from a qualitative study, which demonstrates a reflexive approach during which a cisgender female nursing researcher considers how her outsider positioning might impact how she conducts qualitative interviews with people living with HIV and the responses given by participants. BOX 20.3 EXAMPLE OF REFLEXIVE PRACTICE I am an outsider to the participants involved in this study; I do not share lived experience of HIV. I am also a health professional, which may afford me a position of power during interactions with people living with a serious health condition ... my stance changed somewhat with different participants and as the research progressed. Where participants expressed frustration or disgust at the actions of health professionals, my initial response was to distance myself from that role, not disclosing that I was also a nurse. As the interviews progressed, however, I found that being upfront about my clinical role often served to enhance the dialogue. For example, Elliot (Pseudonym), a young man recently diagnosed with HIV, was keen to explain why he felt judged in many clinical environments ... Despite my initial concerns that my outsider status would be a hindrance to

‘Nothing about us without us’: researching sexual and reproductive health  289 collecting rich data about the lived experiences of support (or a lack of it), on reflection, this was not the case. My identity as a clinician who was interested in the lived experiences of each participant meant that for some, I became an ideal sounding board for their accounts of dealings with health professionals and services.

The Insider-Outsider Perspectives One conceptualisation of positionality is the role of the researcher as an insider or an outsider. Insider researchers—someone who shares the lived experience under examination or has a similar knowledge or background—typically belong to the communities being engaged (Liamputtong, 2010; Ogilvie et al., 2008). For example, a gay man researching sexual health among gay men would be considered an insider. Insider status offers methodological benefits to qualitative projects as the shared language and culture with participants can increase researchers’ acceptance and ability to capture more in-depth data (Dwyer & Buckle, 2009; Ogilvie et al., 2008). Insider status may also help researchers develop nuanced research questions based on lived experience within communities (Hayfield & Huxley, 2015). However, insider positioning can also bring challenges. For example, participants may not discuss certain phenomena because of a shared identity with the researcher or describe certain experiences because of a presumed shared understanding (Ademolu, 2023; Dwyer & Buckle, 2009; Liamputtong, 2010). Insider researchers may struggle to determine whether their analysis is grounded in the participants’ stories or, instead, their own experiences. Outsiders typically do not belong to the communities being investigated. Participants who have experienced societal discrimination and oppression may perceive that outsiders do not fully understand the experiences of those within communities (Hayfield & Huxley, 2015). Tensions may arise if outside researchers do not conduct research in a culturally safe manner, do not have established and trusted community connections, or if they are not affirming and responsive to the unique needs and context of the community. However, there are ways that being an outsider can add to the rigour of the research process. Outsider researchers can help insider researchers and participants uncover truths they may be afraid of disclosing (Dwyer & Buckle, 2009). For example, when conducting research with small ethnic minority communities, participants may have anxiety about others within their community (namely insider researchers, interpreters) knowing information about their SRH (Dean et al., 2012), being an outsider can instil a sense of trust and safety for participants that their information will remain confidential, especially if the outsiders demonstrate conscious and unconscious cultural humility and culturally safe research practices (Ogilvie et al., 2008). Outsiders can also take a more objective stance when contradictory data is produced or when community partners involved have close personal connections to the data. Researcher positioning exists within a sociocultural context and will necessarily change as the research progresses, which can significantly influence the relationship between participants and insider researchers and the quality of the data collection. For example, Ademolu (2023) reflected on the ‘impermanence’ of their insider status when conducting research with fellow first- and second-generation Nigerian diaspora in the United Kingdom. Whilst their ethnoracial sameness initially made the author feel like an insider, cultural differences emerged during interviews that made this insider status untethered. In contrast, in the project described

290  Handbook of sensitive research in the social sciences by Dean et al. (2016), the lead author was an outsider because of their ethnoracial difference. However, their past experience of living and working in Sudan during a time of civil unrest meant that they were considered an ‘insider by some participants due to an assumed understanding of their ethnoracial background and their forced migration and resettlement journey from Sudan to Australia. For this reason, some advocate that an insider/outsider status should be considered fluid and non-dichotomous rather than a fixed identity, holding space for the somewhere in-between that participants and researchers may identify with and hold (Dwyer & Buckle, 2009; Liamputtong, 2010). Dwyer and Buckle (2009) posit that no one can be a true insider or outsider because, for researchers, perspectives are shaped by their experiences and the research process, including vast amounts of reading on a particular phenomenon. This is in addition to the fact that those with a shared identity still have unique experiences due to various intersecting factors. Individuals can also share some similarities with communities, even if it is not the identity central to the research. For example, in their reflections on working with LGBTQIA+ communities, both Hayfield and Huxley (2015) were open about their insider-outsider status. Hayfield disclosed her sameness to the participants through shared oppression and experiences of being bisexual and the value this added to her understanding and community connections. However, Huxley reflected that whilst she was an outsider to the ‘social identities of the participants, she shared characteristics such as ethnicity, gender, and age with participants, which cultivated some degree of shared experience and sameness. In the work by Fowler et al. (2023), the lead author describes how he embodies both insider and outsider research perspectives in the context of transgender health. As a self-identified queer person, the lead author reflected that he could understand some of the challenges that impact the broader LGBTQIA+ community. However, there were nuances unique to trans (binary and non-binary) people that he could not relate to. Ogilvie et al. (2008) argue that researchers can never clearly be categorised as an insider or an outsider. Therefore, whilst binary representations of positionality, through the use of insider-outsider status, might offer thoughtful structure, they do not fully represent the heterogeneous nature of collective communities and the messiness of the space in-between experienced by researchers with or without lived experience (Dwyer & Buckle, 2009). For all these reasons, conducting SRH research with priority populations should involve the meaningful contributions of insider and outsider researchers and hold space for the transient nature of such identities. This combined approach allows research project methodologies to benefit from insider and outsider authors’ unique contributions. Box 20.4 demonstrates how Fowler et al. (2024), in their work with aromantic communities, integrated insider and outsider perspectives, allowing for a balanced yet affirming presentation of results. BOX 20.4 EXAMPLE OF INTEGRATING INSIDER RESEARCH PERSPECTIVES WITH OUTSIDER PERSPECTIVES As stated previously, the balance of insider and outsider research perspectives supported a balanced, comprehensive thematic analysis. To facilitate this, shared understanding of the data to inform the analysis was promoted between insider and outsider team members through processes of reflection. This included understanding and reflecting on the ways that internal biases may be influencing how the data were perceived. Furthermore, the inclusion of community members ensured that the presentation of results was affirming

‘Nothing about us without us’: researching sexual and reproductive health  291 (they did not invalidate aromantic identities or use derogatory language, for example) but was simultaneously grounded in the experiences of participants. (Fowler et al., 2024)

The Importance of Reflection for Researcher Safety Considering the psychological safety of the researcher(s) when conducting sensitive research is essential. This may be particularly important for insider researchers who, through their lived experience, may be more motivated to explore a sensitive research area (Mallon & Elliott, 2021). Ademolu (2023) described how being an insider researcher can lead some to feel excluded or othered from their own communities. This may be heightened for individuals working within priority communities where a sense of community has been identified as pivotal for well-being—such as in LGBTQIA+ communities (Roberts & Christens, 2021). Anecdotal evidence suggests insider researchers may also start to feel frustration within their communities for not responding positively to research. Although this has not been explored in empirical literature, these frustrations might cause internal tensions between the researcher and the community, which theoretically might influence their well-being if a sense of community is challenged or severed. However, both insiders and outsiders in research can potentially experience psychological distress when conducting sensitive research. As described by Mallon and Elliott (2021) in their account of researchers’ experiences conducting sensitive research, some researchers found exploring ‘sensitive topics’ and listening to the participants’ personal experiences led to intense emotional responses and a sense of concern about the potential exploitation of participants’ stories, even for those who were personally and professionally invested in the research due to shared identity. When exploring sensitive topics, these responses may be compounded by feelings of anger, sadness and even a sense of hopelessness and guilt for the participants’ lived experiences during data collection and when transforming participants’ stories into data. Some of Mallon and Elliott’s participants also described being afraid to disclose how the research was making them feel for fear of being judged or even losing their positions; this was particularly poignant for novice and early-career researchers (Mallon & Elliott, 2021). These experiences can make a researcher vulnerable to psychological harm if adequate safety provisions, including the opportunity to reflect and debrief throughout the research process, are not in place. Researchers conducting sensitive SRH research with priority populations must reflect on who they are and their triggers if they are to conduct research in a manner that protects their well-being as well as the safety of their participants. Lived experience often draws people to sensitive topics (Mallon & Elliott, 2021), meaning some triggering situations are intrinsically unavoidable. However, engaging in reflective practices can help identify triggers for both insider and outsider researchers as they emerge. Reflecting as a wider group of individuals with unique relationships to the phenomenon under investigation and the data may provide a strong sounding board for reflection and help to reduce the overall impact on the researcher.

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SENSITIVITY TO THE NEEDS AND LIVES OF PARTICIPANTS Sexual and reproductive health research often covers topics that are considered sensitive and even taboo in many societal contexts, making participant safety paramount. Communitybased, qualitative SRH research that engages people with lived experience throughout the research process is an effective way to confirm that the research approach and environment are safe and non-stigmatising and that the language is non-judgemental and inclusive, such as the use of affirming pronouns for trans and gender diverse people (Fowler et al., 2023). This type of research takes time and can be labour-intensive and resource-expensive. This can sometimes create challenges with maintaining relationships with communities and securing adequate funding to appropriately reflect and reimburse the commitment of the community partners and participants. However, the investment and commitment to the meaningful ongoing involvement of communities in SRH research is a critical strategy to elevate the voices and experiences of those with lived experience. The researcher’s role must incorporate an empathetic and intuitive approach, behaving with authenticity, being adaptable, and exercising empathy and lack of judgement to minimise potential harm. It can be argued that purely by agreeing to participate in sensitive research, people have the potential to be vulnerable (Dean et al., 2012; Sokol et al., 2015). People who are perceived as vulnerable can be excluded from research because of an assumption that they lack the ability to provide informed consent, or the credibility and authority to speak about their experiences (Watson, 2019). Whilst this is not the case, care must be taken to ensure that participants are not placed at greater risk or vulnerability because they participate in SRH research. So, when conducting sensitive SRH research with priority populations, the research method must be rigorous and flexible to compensate for the target population’s diversity of needs and to capture the participants’ perspectives accurately and safely. This consideration must also extend to community members who are working as co-researchers. Early and ongoing community engagement can help identify where there is a potential for harm to occur to participants and community co-researchers, including the ways the findings are interpreted, disseminated, and implemented. There are core values that must be applied to all instances of research involving human subjects; however, when conducting sensitive SRH research with priority populations, additional ethical considerations are needed as many priority populations have intersecting experiences. Putting strategies in place to protect the safety and confidentiality of participants is essential, and there are specific considerations when working with children and young people. Safety and Confidentiality When Researching Taboo Topics Ensuring the physical and emotional safety of participants, including the right to privacy, is fundamental in SRH research (WHO, 2001). From the outset, researchers must be as transparent as possible about the benefits and limitations of their work. For example, engaging in research may trigger memories of traumatic experiences for people who are victims/survivors of sexual assault, and they must be afforded the opportunity to balance this risk against what might be gained from research participation (Women’s Aid et al., 2020). A risk assessment should always be carried out that considers participants’ individual circumstances and perspectives.

‘Nothing about us without us’: researching sexual and reproductive health  293 It is fairly routine to collect contact details of participants, but consideration needs to be taken when conducting sensitive SRH research where there are any potential risks to the participant if others become aware that they have taken part in a research project. For example, in research involving women who are victims/survivors of domestic violence, consideration must be given to safety in relation to perpetrators who may be present in women’s lives (WHO, 2001; Women’s Aid et al., 2020). Community-based non-profit or peer-led organisations offering support to the victims/survivors of domestic violence are aware of the nuanced risks that their clients may face if they engage in research, so they can offer assistance with developing communication pathways that ensure participants can be contacted safely, along with other strategies for maintaining the participant’s safety. Some of these strategies may include clear agreements on when and how the researchers have permission to contact participants, for example, via text message and never leaving a voice message identifying the research or participants’ involvement. It is also important to recognise that participants’ circumstances may have changed, so regular check-ins with participants to confirm contact details are necessary. Careful consideration must also be given to how written correspondence is addressed, and the impact receiving emails or letters from identified organisations, such as a university or non-profit organisation may have on participants’ safety and confidentiality. Participants may need other allowances to remain anonymous. For example, it may not be appropriate to collect demographic details such as place of residence for some groups of participants or use demographic details to stage quotes and participants’ context. Choosing a location that is safe for both the participant and the researcher is another consideration when collecting qualitative data. Participants should be allowed to define what is safe, and arrangements should remain flexible based on their identified needs. For example, victims/survivors of sexual assault should not be asked to undertake a research activity where they could be overlooked or interrupted by a third party, such as a partner or family member, unless they choose this (WHO, 2001; Women’s Aid et al., 2020). Safety can also be compromised if researchers engage with different members of families where domestic violence is an issue. Confidentiality and boundaries must be considered when conducting sensitive SRH research, as well as efforts to eliminate the likelihood that information about participants is accidentally shared with someone who may pose a risk to them. Considering Consent and Competence When Working With Minors Many SRH research topics are salient for young people, including those considered a minor— a person under the age of majority when a person can obtain full legal rights as an adult. In Australia, this is considered a person under the age of 18 years. Everyone’s capacity and competence to provide informed consent must be assessed. However, in the case of minors, researchers must consider whether parental consent is required and the impact that parental involvement may have on research participation, particularly when sensitive topics are involved. Gillick competence is commonly applied in clinical practice to assess young participants and is a useful tool to measure whether a young person has sufficient understanding and capacity to enable them to provide independent voluntary consent to participate in the research (Queensland Health, 2023). It is also important to consider the impact of the research on the young person in the context of the communities to which they belong. Dominant cultural and religious norms within communities may render minors with few opportunities to share information about their sexual

294  Handbook of sensitive research in the social sciences experiences, especially when family or community members are present. Parents and community leaders can act as gatekeepers to young people being involved in research about SRH matters. For young LGBTQIA+ people, the requirement for parental consent might result in unwanted disclosure of identity or being ‘outed’ to parents, which could be contrary to the safety of the participant. In some cases, a waiver of parental consent may be necessary. Mandatory reporting of potential harm In qualitative SRH research involving topics like sexual abuse or domestic violence, participants may reveal experiences of illegal behaviour, imminent risk of harm to themselves or others, or retrospectively reported instances of abuse. Researchers have a responsibility as global citizens to consider potential harms and have a plan on how to manage these types of disclosures. This is a complicated space, positioned at the interface of legal and ethical expectations and acknowledging that determinations of abuse or neglect are often socially constructed judgments (Resnik & Randall, 2018). Of utmost importance is establishing a risk management plan and organising the ways that support will be offered to participants. Beyond this, researchers have a responsibility to consider what they will do if participants disclose illegal behaviours and potential harm. This is particularly important for clinical researchers who may be legally mandated to report or escalate these concerns. Mathews (2022) outlines legal obligations around reporting if researchers are made aware of children being subjected to abuse or neglect by parents or caregivers. In countries like Australia with mandatory reporting, the law requires designated persons to report known and suspected cases of child maltreatment to child welfare agencies. Designated persons include teachers, early childhood education and care practitioners, doctors, nurses, police, and allied health practitioners (Mathews, 2022). Academic researchers are generally not legislatively required to report instances of known or suspected child harm or abuse, no matter how severe or current, unless they are designated persons. Yet, their ethical duty remains to protect a child participant in cases of clear significant harm or imminent risk. Encouraging children’s participation in SRH research aligns with their agency and human rights, making it essential that mandatory reporting is considered when engaging in SRH with young people. Participants over 18 can express reporting preferences; however, the resolution of how to act in the case of actual or potential child maltreatment requires a process of balancing harms and benefits based on principles and rigorous reasoning to avoid arbitrariness and partiality (Mathews, 2022). It is inevitable that value judgements are made when determining which interest prevails in situations of conflict. Importantly, all research participants, whether adult or child, must be made aware of mandatory reporting duties held by members of the research team and be offered the opportunity to opt in or out of discussions accordingly (Newman, 2007). Data access with publication—what this means to participants As with any research, it is imperative that SRH research data storage procedures ensure participants’ anonymity and confidentiality, unless participants have given specific permission to share any identifying details. Secure online storage and data protection procedures must be in place. The increasing calls for unrestricted access to research data can be problematic in qualitative research involving people who have shared their experiences of, or perspectives on, taboo and sensitive topics. Safety concerns should be central to the decision to share data publicly, and participants’ permission for the future use of anonymised data must be sought. There will be times when anonymising the data makes archiving meaningless. If explicit

‘Nothing about us without us’: researching sexual and reproductive health  295 permission is not granted, nor consent signed, then qualitative data pertaining to people’s SRH lives and lived experiences should not be made available to third parties. Translation to practice and dissemination of findings Working with communities and key stakeholders to develop accessible dissemination plans is also a key principle of conducting SRH research with priority populations. Active, meaningful community leadership and engagement throughout the research process can be used to inform safe research practices, but it can also streamline the translation of research findings and the development of SRH interventions and strategies to improve health outcomes and reduce health inequalities (O’Mara-Eves et al., 2015). More importantly, it helps to ensure that the research is disseminated in ways that are safe and affirming of the participants’ lived experience and do no harm or cause further marginalisation, racism, or discrimination experienced by many priority populations. Working with priority populations to disseminate findings widely among academic and policymaker audiences can also help to leverage ongoing funding for the translation of findings into community-driven change that aligns with the communities’ priorities and moves toward long-term sustainable change (Gunatillake et al., 2020).

POINTS TO CONSIDER EXPLORING ‘SENSITIVE’ ISSUES WITH PRIORITY POPULATIONS Meaningful engagement with people and communities who have personal experience of the topic or phenomenon being explored in the research is key to conducting safe and effective research that generates findings and impacts reflective of their lived experience and priorities. Box 20.5 provides a summary of points for researchers to consider when conceptualising a community led/based participatory project exploring ‘sensitive’ SRH issues with priority populations that privilege and centres their lived experience voices. BOX 20.5 POINTS TO CONSIDER WHEN CONCEPTUALISING A COMMUNITY LED/BASED PARTICIPATORY PROJECT EXPLORING SENSITIVE SRH ISSUES WITH PRIORITY POPULATIONS. 1. When and how will people who have lived experience become involved as your consumers/community representatives/partners? 2. Do you have appropriate representation of and leadership from ‘people who have lived experience’ as consumers and community representatives/partners? Have you identified key community organisations that you can partner with to facilitate appropriate and safe community connections and participation? 3. Have you considered the barriers, potential harms, and ethical considerations for people who have lived experience becoming consumers and community representatives/partners and developed strategies to address these? 4. Have you reflected on your positionality and how this influences the research process?

296  Handbook of sensitive research in the social sciences 5. What do you need to do to create a safe space and an open, respectful communication pathway that promotes active, equal, and mutual sharing of knowledge and experience to inform the designing and conducting of research? 6. What will you do to ensure that participants and co-researchers in your study remain safe and aware of their rights around confidentiality? 7. Do you have a process, policy, and/or agreement in place for people who have lived experience becoming consumers and community representatives/partners in your research, including appropriate acknowledgement of data ownership and contribution to intellectual property? 8. Have you got adequate time and fiscal resources to support people who have lived experience to be actively and equally involved as your consumers/community representatives/partners? For example, do you have the funds to adequately and appropriately remunerate and acknowledge the time and expertise of the people with lived experience who volunteer to be participants in your research? 9. What are the training needs of people who have lived experience who are consumers and community representatives/partners in your project? 10. Have you established a mutually agreed upon study dissemination and publication plan? For example, do you have an appropriate and inclusive representation of people who have lived experience as authors in your publications, during presentations, and with any other study outputs? (Dean et al., 2012; Fowler et al., 2023; McKenzie & Hanley, 2007; National Health and Medical Research Council, 2018; Smith & Newman, 2023).

CONCLUSION AND FUTURE DIRECTIONS This chapter did not set out to present an exhaustive list of best practice tips for conducting qualitative SRH research with priority populations. Rather, it highlights that meaningful community engagement, leadership, and reflexivity are imperative when conducting this type of research. The authors have emphasised the importance of taking the ‘Nothing about us without us approach when addressing any topic and when using any methodological approach. Understanding the lived experience of participants and examining the researcher’s positioning are necessary to develop safe research spaces and produce outcomes that align with the communities’ priorities. However, it is important to remember that one approach does not fit all, so the key to successful qualitative SRH research with priority populations is to work with consumers and community members to find what will work best for the project and for the community researchers are partnering with. The authors strongly posit that researchers who engage in sexual and reproductive health research must advocate for priority populations to set research agendas that affect them, support them to lead research and, thus, amplify their voices throughout the research process.

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REFERENCES Ademolu, E. (2023). Birds of a feather (don’t always) flock together: Critical reflexivity of ‘outsiderness’ as an ‘insider’ doing qualitative research with one’s ‘own people’. Qualitative Research, 24(2), 344– 366. https://doi​.org​/10​.1177​/14687941221149596. AIDS United, & US People Living with HIV Caucus. (2021). Meaningful involvement of people with HIV/AIDS (MIPA) “nothing about us without us”, accessed 26 September 2024 at https://aidsunited​ .org​/meaningful​-involvement​-of​-people​-with​-hiv​-aids​-mipa/. Alam, Z., Deol, H., Dean, J. A., & Janda, M. (2022). Reasons behind low cervical screening uptake among South Asian immigrant women: A qualitative exploration. International Journal of Environmental Research and Public Health, 19(3), 1527. https://doi​.org​/10​.3390​/ijerph19031527. Arcaya, M. C., Arcaya, A. L., & Subramanian, S. V. (2015). Inequalities in health: Definitions, concepts, and theories. Global Health Action, 8(1), 27106. https://doi​.org​/10​.3402​/gha​.v8​.27106. Bell, S., Aggleton, P., Ward, J., & Maher, L. (2017). Sexual agency, risk and vulnerability: A scoping review of young Indigenous Australians’ sexual health. Journal of Youth Studies, 20(9), 1208–1224. https://doi​.org​/10​.1080​/13676261​.2017​.1317088. Berg, H., Jones, A., Patella-Rey, P. J., & Schwarz, C. (2022). ‘Nothing about us without us’: An interview on the sex worker syllabus. Ethics and Social Welfare, 16(2), 144–150. https://doi​.org​/10​.1080​ /17496535​.2022​.2043992. Brennan, R. P., Fitzgerald, L., Dean, J. A., & Selvey, L. (2023). ‘Change creates change’ – older female sex workers’ experiences through the early Covid-19 pandemic. Culture, Health & Sexuality, 26(4), 466–482. https://doi​.org​/10​.1080​/13691058​.2023​.2224869. Brondani, M., Moniri, N. R., & Kerston, R. P. (2012). Community-based research among marginalized hiv populations: Issues of support, resources, and empowerment. Interdisciplinary Perspectives on Infectious Diseases, 601027. https://doi​.org​/10​.1155​/2012​/601027. Busetto, L., Wick, W., & Gumbinger, C. (2020). How to use and assess qualitative research methods. Neurological Research and Practice, 2(1). https://doi​.org​/10​.1186​/s42466​- 020​- 00059​-z. Charlton, J. I. (1998). Nothing about us without us. In J. Charlton (ed.), Nothing about us without us: Disability oppression and empowerment (pp.3–18). Berkeley and Los Angeles, CA & London, England: University of California Press. https://doi​.org​/10​.1525​/california​/9780520207950​.003​.0001. Crespo-Fernández, E. (2018). Taboos in speaking of sex and sexuality. In K. Allen (ed.), The Oxford Handbook of taboo words and language (pp.41–60). Oxford: Oxford University Press. https://doi​.org​ /10​.1093​/oxfordhb​/9780198808190​.013​.3. Dean, J. A., Mitchell, M., Stewart, D., & Debattista, J. (2016). Intergenerational variation in sexual health attitudes and beliefs among Sudanese refugee communities in Australia. Culture, Health & Sexuality, 19(1), 17–31. https://doi​.org​/10​.1080​/13691058​.2016​.1184316. Dean, J. A., Wollin, J., Stewart, D., Debattista, J., & Mitchell, M. (2012). Hidden yet visible: Methodological challenges researching sexual health in Sudanese refugee communities. Culture, Health & Sexuality, 14(8), 911–924. https://doi​.org​/10​.1080​/13691058​.2012​.709639. Delor, F. & Hubert, M. (2000). Revisiting the concept of ‘vulnerability’. Social Science & Medicine, 50(11), 1557–1570. https://doi​.org​/10​.1016​/S0277​-9536(99)00465-7. Dwyer, S. C. & Buckle, J. L. (2009). The space between: On being an insider-outsider in qualitative research. International Journal of Qualitative Methods, 8(1), 54–63. https://doi​.org​/10​.1177​ /160940690900800105. Fowler, J. A., Mendis, M., Crook, A., Chavez-Baldini, U., Baca, T., & Dean, J. A. (2024). Exploring aromanticism through an online qualitative investigation with the aromantic community: “Freeing, alienating, and utterly fantastic”. International Journal of Sexual Health, 36(1), 126–143. https://doi​ .org​/10​.1080​/19317611​.2024​.2311158. Fowler, J. A., Warzywoda, S., Franks, N., Mendis, M., Lazarou, M., Bisshop, F., Wood, P., & Dean, J. A. (2023). Highs, lows, and hormones: A qualitative metasynthesis of transgender individuals’ experiences undergoing gender-affirming hormone therapy. Journal of Homosexuality, 71(7), 1652– 1683. https://doi​.org​/10​.1080​/00918369​.2023​.2186759. Gharabaghi, K. & Anderson-Nathe, B. (2017). Strength-based research in a deficits-oriented context. Child & Youth Services, 38(3), 177–179. https://doi​.org​/10​.1080​/0145935x​.2017​.1361661.

298  Handbook of sensitive research in the social sciences Gunatillake, T., Shadbolt, C., Gould, D., Lam, M., Hearst, M. G., Vleeskens, C., Choong, P., & Dowsey, M. (2020). Embedding consumer and community involvement within an established research centre: Moving from general recommendations to an actionable framework. Research Involvement and Engagement, 6(1). https://doi​.org​/10​.1186​/s40900​- 020​- 00241​-2. Hayfield, N., & Huxley, C. (2015). Insider and outsider perspectives: Reflections on researcher identities in research with lesbian and bisexual women. Qualitative Research in Psychology, 12(2), 91–106. https://doi​.org​/10​.1080​/14780887​.2014​.918224. Heard, E., Oost, E., McDaid, L., Mutch, A., Dean, J. A., & Fitzgerald, L. (2019). How can HIV/STI testing services be more accessible and acceptable for gender and sexually diverse young people? A brief report exploring young people’s perspectives in Queensland. Health Promotion Journal of Australia, 31(1), 150–155. https://doi​.org​/10​.1002​/ hpja​.263. Hollingdrake, O., Dean, J., Mutch, A., Lui, C.-W., Howard, C., & Fitzgerald, L. (2022). Understanding the social and emotional dimensions of HIV self-management: A qualitative study of newly diagnosed people living with HIV in Queensland, Australia. Journal of the Association of Nurses in AIDS Care, 33(2), 106–117. https://doi​.org​/10​.1097​/JNC​.0000000000000272. Israel, B. A., Eng, E., Schulz, A. J., & Parker, E. A. (2012). Introduction to methods for CBPR for health. In B. A. Israel, E. Eng, A. J. Schulz, & E. A. Parker (eds), Methods for community-based participatory research for health (2 ed.) (pp.3–38). John Wiley & Sons, Incorporated. Joseph, F. I., Earland, J., & Ahmed, M. A. (2021). Experience of conducting sensitive qualitative research as a cultural outsider: Formulation of a guide for reflexivity. International Journal of Qualitative Methods, 20. https://doi​.org​/10​.1177​/16094069211058616. Jürgens, R. (2008). “Nothing about us without us” greater, meaningful involvement of people who use illegal drugs: A public health, ethical, and human rights imperative international edition (ISBN 978-1-896735-92-4). Open Society Institute, accessed 26 September 2024 at https://www​.ope​nsoc​ iety​foun​dations​.org​/uploads​/ b99c406f​-5e45​- 4474 ​-9343​-365e548daade​/nothing​-about​-us​-without​-us​ -report​-20080501​.pdf. Liamputtong, P. (2010). Performing qualitative cross-cultural research. Cambridge: Cambridge University Press. Liamputtong, P. (2020). Qualitative research methods (5th ed.). South Melbourne: Oxford University Press. Mallon, S. & Elliott, I. (2021). What is ‘sensitive’ about sensitive research? The sensitive researchers’ perspective. International Journal of Social Research Methodology, 24(5), 523–535. https://doi​.org​ /10​.1080​/13645579​.2020​.1857966. Marsh, C. A., Browne, J., Taylor, J., & Davis, D. (2017). A researcher’s journey: Exploring a sensitive topic with vulnerable women. Women & Birth, 30(1), 63–69. https://doi​.org​/10​.1016​/j​.wombi​.2016​.07​ .003. Martin, K., Bryant, J., Beetson, K., Wilms, J., Briggs, T., Treloar, C., & Newman, C. (2023). Normalising sex and resisting shame: Young Aboriginal women’s views on sex and relationships in an urban setting in Australia. Journal of Youth Studies, 1–17. https://doi​.org​/10​.1080​/13676261​.2023​.2225422. Mathews, B. (2022). Legal duties of researchers to protect participants in child maltreatment surveys: Advancing legal epidemiology. UNSW Law Journal, 45(2), 722. https://doi​.org​/10​.53637​/OAKC2052. McKenzie, A. & Hanley, B. (2007). Consumer and community participation in health and medical research. A practical guide for health and medical research organisations. The University of Western Australia School of Population Health and the Telethon Institute for Child Health Research, accessed 26 September 2024 at https://www​.thekids​.org​.au​/globalassets​/media​/images​/pagessections​ /research ​/ help​-shape​-our​-research ​/the​-green​-book​-mar08​.pdf. National Health and Medical Research Council (2018, 23 November). Guidelines for guidelines: Consumer involvement, accessed 26 September 2024 at https://www​.nhmrc​.gov​.au​/gui​deli​nesf​orgu​ idelines​/plan​/consumer​-involvement​# toc_​_650. Newman, E. (2007). Mandatory reporting: How much detail about risk should subjects receive? Journal of Empirical Research on Human Research Ethics, 2(1), 62–64. https://doi​.org​/10​.1525​/jer​.2007​.2​.1​ .62. O’Mara-Eves, A., Brunton, G., Oliver, S., Kavanagh, J., Jamal, F., & Thomas, J. (2015). The effectiveness of community engagement in public health interventions for disadvantaged groups: A meta-analysis. BMC Public Health, 15(1). https://doi​.org​/10​.1186​/s12889​- 015​-1352​-y.

‘Nothing about us without us’: researching sexual and reproductive health  299 Ogilvie, L. D., Burgess-Pinto, E., & Caufield, C. (2008). Challenges and approaches to newcomer health research. Journal of Transcultural Nursing, 19(1), 164–173. https://doi​.org​/10​.1177​ /1043659607309142. Queensland Health (2023). Guide to informed decision-making in health care. Interim update. Version 2.2, accessed 26 September 2024 at https://www​.health​.qld​.gov​.au/_​_data​/assets​/pdf​_file​/0019​ /143074​/ic​-guide​.pdf. Resnik, D. B. & Randall, D. C. (2018). Reporting suspected abuse or neglect in research involving children. Journal of Medical Ethics, 44(8), 555–559. https://doi​.org​/10​.1136​/medethics​-2017​-104452. Roberts L. M. & Christens, B. D. (2021). Pathways to well-being among LGBT adults: Sociopolitical involvement, family support, outness, and community connectedness with race/ethnicity as a moderator. American Journal of Community Psychology, 67(3–4), 405–418. Rule, J., Woods, R., & Machon, K. (2020). Research and representation: The meaningful involvement of HIV-positive people in HIV research.National Association of People With HIV Australia (NAPWHA): Newtown, Australia. Sandfort, T. G. M. & Ehrhardt, A. A. (2004). Sexual health: A useful public health paradigm or a moral imperative? Archives of Sexual Behavior, 33(3), 181–187. https://doi​.org​/10​.1023​/ B​:ASEB​ .0000026618​.16408​.e0. Sieber, J. E. & Stanley, B. (1988). Ethical and professional dimensions of socially sensitive research. American Psychologist, 43(1), 49–55. https://doi​.org​/10​.1037​/0003​- 066X​.43​.1​.49. Silverio, S. A., Sheen, K. S., Bramante, A., Knighting, K., Koops, T. U., Montgomery, E., November, L., Soulsby, L. K., Stevenson, J. H., Watkins, M., Easter, A., & Sandall, J. (2022). Sensitive, challenging, and difficult topics: Experiences and practical considerations for qualitative researchers. International Journal of Qualitative Methods, 21. https://doi​.org​/10​.1177​/16094069221124739. Smith, A. K. J. & Newman, C. E. (2023). LGBTQ+ health and social research. In K. Dew & S. Donovan (eds), Encyclopedia of health research in the social sciences. Cheltenham, UK and Northampton, MA, USA: Edward Elgar Publishing. Sokol, R., Fisher, E., & Hill, J. (2015). Identifying those whom health promotion hardly reaches: A systematic review. Evaluation & the Health Professions, 38(4), 518–537. https://doi​.org​/10​.1177​ /0163278715605883. Spencer, G., Fairbrother, H., & Thompson, J. (2020). Privileges of power: Authenticity, representation and the “problem” of children’s voices in qualitative health research. International Journal of Qualitative Methods, 19. https://doi​.org​/10​.1177​/1609406920958597. Suarez‐Balcazar, Y. (2020). Meaningful engagement in research: Community residents as co‐creators of knowledge. American Journal of Community Psychology, 65(3–4), 261–271. https://doi​.org​/10​ .1002​/ajcp​.12414. Warzywoda, S., Fowler, J. A., Nourse, C., Wu, M., Britton, S., Rowling, D., Griffin, P., Lazarou, M., Hamilton, Z., & Dean, J. A. (2023). Syphilis in pregnancy: A qualitative investigation of healthcare provider perspectives on barriers to syphilis screening during pregnancy in south-east Queensland. Sexual Health, 20(4), 330–338. https://doi​.org​/10​.1071​/sh22193. Watson, J. C. (2019). Talking the talk: Enhancing clinical ethics with health literacy best practices. HEC Forum, 31(3), 177–199. https://doi​.org​/10​.1007​/s10730​- 019​- 09369​-5. WHO (2001). Putting women first: Ethical and safety recommendations for research on domestic violence against women, accessed 26 September 2024 at https://www​.who​.int​/publications​/i​/item​/ WHO​-FCH​-GWH​- 01​.1. WHO (2021). “Nothing about us, without us”: Tips for policy-makers on child and adolescent participation in policy development, accessed 26 September 2024 at https://www​.who​.int​/europe​/ publications​/m​/item​/nothing​-about​-us-​-without​-us. Women’s Aid, Women’s Aid Federation Northern Ireland, Scottish Women’s Aid, & Cymorth i Ferched Cymru / Welsh Women’s Aid (2020). Research integrity framework on domestic violence and abuse, accessed 26 September 2024 at https://www​.womensaid​.org​.uk​/wp​-content​/uploads​/2020​/11​ /Research​-Integrity​-Framework​-RIF​-on​-Domestic​-Violence​-and​-Abuse​-DVA​-November​-2020​.pdf. World Health Organisation (1975). Education and treatment in human sexuality: The training of health professionals. (technical report series no 572), accessed 26 September 2024 at https://iris​.who​.int​/ handle​/10665​/38247.

21. Against and with the silence: language, relations and methods in qualitative research on pregnancy loss and perinatal bereavement Julia Böcker

INTRODUCTION Pregnancy loss and perinatal bereavement are sensitive subjects for many people. Pregnancy loss can be understood as a loss occurring at any gestational stage, including miscarriage, stillbirth and (late) abortion (Littlemore & Turner, 2019), which is defined as a loss by the person affected by it. Worldwide, every year, around two million babies are stillborn (Hug et al., 2021), and an estimated 23 million miscarriages occur (Quenby et al., 2021). Affected parties may experience loss, trauma, and pain but also isolation, stigma, and a lack of support or loss acknowledgement (Layne, 2003; Middlemiss & Kilshaw, 2023). However, research in this area is affected by the fact that not everyone experiences loss and bereavement in the same way (Earle et al., 2016). For example, even what is included as loss is different for different people, and there is a myriad of ways of experiencing, remembering, and talking about pregnancy loss and feelings of perinatal bereavement in private and public settings—even by the same person. Whereas some respondents appreciate a more rational language to speak about their experiences, others might feel violated, offended, or irritated by language that minimises their loss, depersonalises their baby (for instance, refers to them as a foetus), or questions their status as a parent. On the contrary, sometimes reproductive incidents like abortion or an early miscarriage of an unintended pregnancy are not perceived as losses, and affected parties do not want to be addressed as parents. There is no one-size-fits-all solution available that allows researchers to approach all respondents in a way each will regard as appropriate and sensitive. In response, researchers must approach this subject with care and reflexivity, taking on board postmodern paradigms to acknowledge those ‘many realities and many truths’ (Liamputtong, 2007, p.15) and favour pluralised methodological approaches such as combining multiple methods, sharing fragmented, ambivalent, and subjective accounts, and using creative research and writing methods. Based on the assumption that pregnancy endings are experienced and talked about very differently, a reflexive approach that is process- and situation-oriented is encouraged. In this chapter, ways of managing this sensitive topic are discussed in relation to an approach that considers the process of qualitative pregnancy loss research as a way of working against the stigma and isolation that are common to pregnancy loss experiences. The lack of words to describe the liminal event, the absence of communication routines, and the unusualness of sharing memories of the dead baby in everyday life result in the persistence of social taboos and a cultural void around pregnancy loss. The avoidance is also rooted in capitalist societies that live up to a cultural norm of striving for gain, strength, and resilience 300

Against and with the silence: language, relations and methods in qualitative research  301 but devaluing feelings of grief, sadness, and loss (Jakoby & Anderau, 2020). While the risks of pain, grief, and trauma in research must be acknowledged and mitigated, research should not be conducted or prevented based on an authoritarian idea of protection, which would just add to what could be termed secondary vulnerability. This echoes the work of Borgstrom and Ellis (2021), who have critically discussed the repercussions of generalising death and dying as genuinely sensitive subjects and research subjects in this field as vulnerable per se. In other words, researchers, research institutions, and ethical boards should consider but not reify vulnerability by warning about research on pregnancy loss and perinatal bereavement as such. To identify those impeding biases, it might be helpful when researchers critically reflect on their own perspective, positionality, feelings, and assumptions regarding the research topic and objectives. A thorough self-reflection will improve research ethics and practice and bring about questions about researcher vulnerability and practices of sustainable academic self-care. The chapter discusses several ethical moments for researchers to consider in this field, including the choice of language, research encounters, and research methods. In doing so, it seeks to act as a starting point for researchers to think about research in this sensitive area. In the following sections, more information is given on why we need a sensitive research mode in research on pregnancy loss and perinatal bereavement. One point of conflict in the field is the choice of language. Sensitive language plays a crucial role in developing and maintaining rapport, which is why a few central discussions around common terms are highlighted. For sensitive and successful researcher–researched relationships, researchers can try to clarify their working assumptions, their own role and feelings, and their aims when being in contact or communicating with the research subjects. While this is true for all social research, some issues for reflection, specifically in the field of pregnancy loss and perinatal bereavement, are presented. Afterwards, some adjustments to interview research, as well as some lesserknown research methods, are presented, which could prove more sensitive and, therefore, ethically and epistemologically appropriate for research in this field. The chapter ends with a short conclusion and provides some discussions about future directions regarding researching pregnancy loss.

PREGNANCY LOSS AS A SENSITIVE ISSUE Enquiry in the field of pregnancy loss and perinatal bereavement ‘intrudes into the private lives or deeply personal experiences of the research participants’ (Liamputtong, 2007, p.6) and is, thus, a highly sensitive endeavour (see Chapter 1 in this volume). Moreover, loss before, during, or after birth, and perinatal bereavement touch upon at least three social taboos, making it not only a sensitive but also a political issue. For many, the loss of a foetus or a baby is a matter of death, dying, and bereavement of a long-awaited and loved family member. This view has become more common since visual technologies and a general trust in modern medicine have given social birth and personhood to unborn babies long before their physical birth (Lupton, 2013). Death is a topic generally perceived by funders, reviewers, researchers, and the wider public as an inherently sensitive topic that bears the risk of ‘harming’ subjects in unsettling and upsetting conversations (Borgstrom & Ellis, 2021). At the same time, since in the case of pregnancy and perinatal loss, the baby has hardly been known outside the family, their births and deaths are often invisible and socially ‘unacknowledged’ (Werner-Lin & Moro, 2004, p.247). There are many

302  Handbook of sensitive research in the social sciences examples of elaborate death and mourning rituals after baby loss from around the globe, such as the South American Chinchorro culture of mummy-sculpturing foetuses more than 5000 years ago (Ramírez Herrera, 2023), the early modern revival baptism for foetuses in Switzerland (Obladen, 2021), or the memorial ceremony Mizuko Kuyō in Japanese Buddhism performed since the 1970s for those who had a pregnancy loss or abortion (Smith, 2013). However, especially within Western countries where modern medicine has been pushed and women have given birth in clinics, for a long time, stillborn and even dying babies were immediately removed after birth and disposed of with the clinical waste (Limbo, 2012). Parents were prevented from seeing and holding them, and no aftercare was provided (Limbo, 2012). Perinatal losses were hidden and treated as if nothing had happened, and parents would mourn in private. Reproductive losses are further linked with sexuality and the body, sexual and reproductive organs, and uncontrollable body fluids, which are intimate topics not likely to be freely shared in public. Relating thereto, another reason for shunning the phenomena is that matters related to reproduction and care in many countries are still highly gendered and primarily situated in the private sphere (historically, the female sphere) and not considered to belong in the public or workspace (the male sphere). Thus, pregnancy loss is a socially neglected, excluded, and stigmatised incident particularly affecting women. There is a long cultural history in many countries to treat pregnancy loss, just like infertility, as individual failures or punishments for former wrongdoings like an indecent way of life. These normative reproductive scripts especially affect women who bear the main responsibility for successful reproduction. At the same time, men face other challenges after pregnancy loss, such as gendered role expectations to show no feelings or weaknesses or a lack of social recognition for their grief (Obst et al., 2020). Finally, perinatal bereavement evokes strong and often challenging feelings. As social beings, people are deeply affected by hearing stories about parents losing their babies before or upon birth. Listening to these stories or even just sitting with them in silence brings about feelings like sadness, hope and helplessness, anxiety, shame, rage, and many more. There are no routines in everyday life to speak about death and disease and to encounter mourners, let alone mourning parents. Losing one’s child is considered such a devastating, ‘unnatural’ and horrific event that people fear contact, as if the incident’s repercussions will rub off on themselves. In the case of pregnancy loss, this hesitance comes along with the ambivalent and liminal status of the ‘lost unborn,’ whose passing happens at the margins of human existence. One effect may be that ‘the grief following pregnancy loss is exacerbated by the lack of cultural scripts to frame the grieving process’ (Littlemore & Turner, 2019, p.2). In a nutshell, both affected subjects and those in contact with them lack words and social scripts to deal with the events and emotions connected with pregnancy loss. Following that, people affected by pregnancy loss or perinatal bereavement are vulnerable in several ways. They have had experiences that might range from severe to devastating or traumatising. Being asked about these intimate experiences can bring about negative feelings, be painful, or even retraumatising. Depending on the point in time the research is conducted, for some people, the grief about the baby's loss or the unfulfilled wish for a child can be overwhelming and paralysing. In addition, the respondents may have already been confronted with stigmatisation and a lack of understanding, support, and acknowledgement for the rather hidden and invisible loss. Therefore, research participants might fear stigma, rejection, and misunderstanding and may not participate in the research in the first place or feel uncomfortable

Against and with the silence: language, relations and methods in qualitative research  303 during participation. In my research on parental experiences of miscarriage and stillbirths in Germany (Böcker, 2022), almost all respondents wanted to know what my own relationship was to the topic. They wanted to know if I know what it means to lose one’s own baby or if they were telling their story to an ‘outsider.’ These requests to tell about me and my approach to the topic revealed worries about being misunderstood or misrepresented. Among the groups of affected individuals, some subgroups are more invisible and vulnerable than others. Whereas in the last decades, legal regulations around pregnancy loss have generally improved, and public awareness, as well as scholarship on the topic, have grown immensely, reproductive losses of marginalised populations are still neglected. For instance, reproductive losses of queer people—such as miscarriages or stillbirths experienced by trans men or surrogates (Riggs et al., 2020; Berend, 2016)—are less ‘seen’ because their natural reproduction is not the expected social norm. Peel and Cain (2016, p.79) speak of ‘deafening heteronormativity’ when it comes to the experiences of miscarrying lesbians. Craven (2019) has taken up this notion and has argued that LGBTQ people’s reproductive experiences with pregnancy loss, failed adoptions, infertility and sterility have not received the attention they deserve despite the growing opportunities for LGBTQ people to become parents. Similarly, the loss experiences of racial and ethnic minorities are addressed less, although they face increased risks (Paisley-Cleveland, 2013; Casper, 2022). In Gypsy, Roma and Traveller communities, for instance, structural and institutional barriers to maternal health outcomes result in high rates of pregnancy loss, but there is hardly any research (Hollinshead et al., 2023). These factors add to what could be termed a multiple or intersectional vulnerability of groups affected by pregnancy loss. If they want to mitigate neglects like these, researchers must try to include these groups and search for field accesses and methods that reach and work for them, through naming minority groups explicitly in the call for participation. Finally, there are extra vulnerable subgroups that are not easy to define. In my research, for instance, I have analysed threads of online support groups and conducted narrative interviews (Böcker, 2022). While the interviewees told stories of loss and disruption, but also of overcoming, healing, and personal growth, on the internet, affected parents would give the most desperate accounts. There might be other reasons for this substantial difference in the two data types, like my snowball sampling strategy or the amount of time between the loss occurrence and the women’s account of it. However, the difference also indicates some participants are accustomed (by background or education) and willing to speak with researchers in person who have found or created words to talk about ‘unspeakable losses’ (Kluger-Bell, 1998) and tell their own story—and those who preferred to write in an online forum of peers or who might not have made sense of the disruptive event or who do not have (yet) a story of ‘successful’ healing to tell. Consequently, the voices of the latter cannot be easily heard through interview research. Against this background, sensitive approaches are not just needed for ethical and moral reasons but also for epistemic ones. Pregnancy loss and infertility are sensitive topics in countries all over the world and thus can only be fully grasped as a social phenomenon by taking this characteristic into account. In other words, a successful social research process must not eliminate but systematically include, address, and represent these sensitivities. The ethical and epistemic aspects are also connected, for if research subjects do not feel properly addressed, understood, or represented, they are more likely to shut down for research, through which their perspectives and needs stay under-represented.

304  Handbook of sensitive research in the social sciences The next two sections present two dimensions of a sensitive mode of research: searching for an appropriate language and frequently reflecting on the researcher-researched relationship before some specific methods of data collection and analysis are presented.

SEARCHING FOR WORDS One major concern in the field is using appropriate language to address the respondents as well as the issues being researched. There are neither neutral terms nor terms that will satisfy everyone’s needs and wishes. On the contrary, well-meant terms can be highly contested and counterproductive in reaching research participants and building rapport. It is very helpful, though, to know and understand commonly used terms and the criticism made by affected individuals. Whenever this is suitable, individual research respondents should be able to use their own terms or be asked about preferences. The discursive difficulties in the field concern the definition of at least three issues: the entities lost, those bereaved by them, and the incident or process leading to bereavement. Many studies have critiqued the rational or insensitive language and comments used by medical professionals (Rowlands & Lee, 2010). First and foremost, words for the entities lost—the baby, the unborn, the foetus, the embryo, the tissue—are highly sensitive, morally charged, and contested. For instance, interviewees in the study by Julia Frost and colleagues (Frost et al., 2007, p.1012) criticised medical professionals for speaking of ‘uterine contents’ when referring to their early miscarriage, thereby depersonalising the unborn baby and diminishing the loss experienced. Especially, foetus is not, as often suggested, a neutral term but has been criticised for its clinical and depersonalising notion (Middlemiss, 2024, p.x). Comments meant to mitigate the grief by minimising the individual loss experienced— like ‘just try for another’ or ‘at least you can get pregnant’—are perceived as unhelpful, insensitive, and violating. Others, on the contrary, have pointed out their discomfort with personalising language. Feminist scholar Leslie Reagan (2003, p.356), for instance, has written about her own miscarriage, rejecting the notions and symbols of ‘baby’ loss: ‘I was surprised by the sympathetic letter [by the hospital] concerning the loss of my “baby” and the grief that I would feel. I have friends whose children have died; my miscarriage was not the same.’ The letter featured baby footprints, symbols of the anti-abortion movement, which made her ‘stomach turn’ (p.358). Other studies, too, have highlighted the criticism by affected parties of professionals who had used language personalising the miscarried, stillborn, or aborted foetuses and addressing them as parents rather than patients (Mitchell, 2016). As an attempt to solve the problem, feminist scholars have created a range of alternatives to name the entity lost, such as ‘unborn’ (Lupton, 2013) or ‘foetal being’ (Middlemiss, 2024, p.xi), and to emphasise their liminal character such as in ‘might-have-been-baby’ (Layne, 2003, p.128). The revaluing term ‘angel babies’ for babies lost before or shortly after birth, common amongst bereaved parents in the USA, also refers to this liminality and is more inclusive than the many medical and legal distinctions. At the same time, the reframing as an innocent and pure (‘white’) angel invokes racial dynamics of baby loss hierarchies (Casper, 2022). Most respondents do not oppose but rather appreciate personalising language, and some research participants are moved by the use of their baby’s name. If research participants have mentioned their baby’s name, it is an act of respect and sensitivity—and of rapport—to

Against and with the silence: language, relations and methods in qualitative research  305 remember and use that name during research encounters. Recognising the social and political relevance of the baby’s name, in her study on second-trimester pregnancy loss in the UK, Aimee Middlemiss (2024, p.xv) ‘decided not to pseudonymise babies at all, because it would undermine the significance of the names which were chosen for them by their parents.’ Instead, she has referred to them ‘in relation to the ontological claim made’ (p.xv) by the interviewees themselves, such as ‘[baby]’ or ‘[daughter]’ to represent the expressed kin relation, to preserve the family’s privacy and to honour the participants’ naming decisions. The difficulties of how to speak about the lost unborn are echoed by difficulties in knowing how to address those affected by the loss in English-speaking studies, usually called ‘parents’ or ‘intended parents.’ For a long time, many bereaved engaged in social visibility and acknowledgement of being a parent—a parent of a deceased child. Some scholars, however, have been more cautious about calling bereaved individuals ‘parents’ since not all identify as such (Murphy, 2016; Giraud, 2015). Finally, terms describing the incident itself—like miscarriage—have been criticised for a long time. At the beginning of her study, Middlemiss (2024) quotes Helen, one of her interviewees, who says how much she dislikes the word miscarriage for it implies mistake, reproductive failure, and blame. Similarly, in German, the language in which my research is situated, ‘Fehlgeburt’ literally means missed or failed birth, and ‘Totgeburt’ translates to dead birth. Both terms have been criticised for their stigmatising and blaming notions, which date back to the Bible, where sinners were punished with miscarriage. To counter these notions, since around the late 2000s, in German-speaking countries, a gradual change set in, and medical professionals like midwives increasingly speak of ‘stille Geburt’ (stillbirth) instead of Totgeburt. Further, though less common, an early miscarriage after which no embryo can be perceived is called a ‘kleine Geburt” (literally small birth) by parents, activists, and medical staff (Böcker, 2022, p.151). A similar tendency has been observed by Shih (2023), who has observed that Taiwanese women create novel expressions and narratives around ‘hsiaochan’ (literally small birth) and thus rearticulate the negative notions of miscarriage. These novel descriptions could be considered for analysis and research communication with the respondents. Instead of focusing on categorial differentiation, studies increasingly consider the embodied nature of pregnancy loss, grief, and mourning and seek to theoretically and methodologically grasp this dimension (see Norwood & Boulton, 2021). Such a conceptualisation ‘centres pregnancy loss as an embodied and social phenomenon within a framework that understands pregnancy as a process with no guaranteed outcomes’ (Lind, 2017, p.2) and opposes the neoliberal idea of pregnancy following ‘a singular linear trajectory’ (Frost et al., 2007, p.1012; see also Letherby, 2015; Layne, 2003, p.59). A focus on embodiment and process also enables researchers to bring together research strands that formerly have been separated because the many types of loss (and their medical, legal, and social names) were not easy to distinguish and have led to misunderstandings and a scattered state of research. In the introduction of a collection of feminist writings on abortion, miscarriage, and stillbirth, Emily Lind (2017, pp.3–4) criticises that these phenomena were rarely studied together: Given that abortion, miscarriage, and stillbirth could conceivably happen to the same person over the course of a reproductive lifetime, that patients carrying nonviable pregnancies are sometimes offered a dilation and curettage (D&C) to expedite the process, and that clinical categories of pregnancy loss (for instance, ‘spontaneous’ versus ‘therapeutic’ abortions) share very similar names

306  Handbook of sensitive research in the social sciences – the research convention of studying these events as distinctive rather than interrelated reveals an epistemic limitation of the field.

Lind appreciates that specific knowledge is needed regarding each form of pregnancy loss but stresses that isolating abortion from miscarriage and stillbirth due to a fear of reproducing antichoice rhetoric maintains the feminist ‘silence’ (Layne, 2003, p.235) around abortion as a form of loss. On the contrary, however, speaking of pregnancy loss as an inclusive umbrella term, as I do, can be considered diminishing when it is not a pregnancy, a state or thing, but an individual baby who is mourned. In an even wider perspective, Sarah Earle and colleagues (2016) speak of ‘reproductive loss, a category that also includes infertility, infant death, maternal death, and other losses to normative experiences with reproduction, such as having had a C-section instead of a ‘natural’ birth, not having conceived ‘naturally,’ or not being genetically related to one’s children. This concept has been adopted for many forms of loss, especially within scholarship that rests on the idea of reproductive justice, but is usually not used by respondents themselves. Moreover, while the term embraces more phenomena in this complex field and shifts the focus to cultural, social, and material conditions and implications of loss experiences, others might criticise the conceptual extension for including experiences that widely differ in severity and physical affection. Such disagreements reveal social hierarchies of loss through which people try to distinguish one type of loss from another, for example, abortion from spontaneous loss (Middlemiss & Kilshaw, 2023). In my research group, for instance, we had a heated debate about whether one can compare the disappointment over a reproductive future that will not occur to the real physical loss of a baby by stillbirth. In their study on baby post-mortem practices, Kate Reed and colleagues (2023, p.3) have decided to simply speak of ‘baby loss’ because all parents in their study called it that. Since the study examines practices and feelings around the autopsy of the baby’s body, the existence of a baby is unquestioned. Debates like these reveal the moral values and normative ideas attached to language choice. Researchers in the field, therefore, cannot acquire an uncontested choice of words but must decide on terms and frames in accordance with their own moral values, particular research interests, and in exchange with field members and stakeholders.

MAKING RESEARCHER-RESEARCHED RELATIONSHIPS Qualitative social research requires making and maintaining relationships with research participants. The research should be properly planned according to standards of trauma-sensitive research ethics, potential risks should be addressed, and ethical approval should be gained. On the other hand, not all challenging situations for both the researched and the researcher can be anticipated and, therefore, avoided, which is why ethical conduct, reflection and reevaluation are needed throughout the whole process. Moreover, the researcher’s own experiences, motivations and emotions may have an impact on recruitment, analysis, and findings (Jones & Murphy, 2021). When I propose a mode of reflexivity as a tool to navigate the risks, I do not assume a modernist researcher subject ‘that is singular, knowable, and fixable’ (Pillow, 2003, p.180) and who can find ‘the right way’ through diligent self-reflection. Rather, I see the need for academic spaces of caring exchange where thoughts can be shared and ‘reflexivities of discomfort’ (Pillow, 2003, p.187) can be practiced. Since making explicit that the

Against and with the silence: language, relations and methods in qualitative research  307 researchers’ own experiences, life-worlds, and circumstances can be difficult and bring them into a vulnerable situation themselves (Behar, 2022), there is a need for academic environments and formats allowing for ‘strong reflexivity, vulnerability, and academic kindness’ (Ploder, 2022, p.31). For a sensitive mode of building and maintaining a relationship with research participants, it is worth sparing a thought for each part of the researcher-researched relationship (see Chapter 1). First, researchers might examine why they research this question, topic, or group in the way they do. What does their research have to do with them, their experiences, values, motivations, and aims? Apart from pursuing an academic career, most researchers strive to improve the situation for affected parents. For many scholars, their own experiences of reproductive loss have been an initial cause to conduct research in this field or to conduct it in a specific way (see Adrian, 2020; Davidson, 2011; Layne, 2003; Reagan, 2003; Sell-Smith & Lax, 2013; Sheach Leith, 2009; Weaver-Hightower, 2012). This intellectual engagement is not only a motivation but also a way to cope with the loss, do something meaningful, and transform feelings of grief into something productive. Personal experiences shape the research focus, questions, methods, and theories applied. Having lost her three-week-old son in intensive neonatal care due to heart failure, sociologist Stine W. Adrian (2020), for instance, has focused on the role of technology in shaping the experience of death at life’s beginning. Feeling worried during the pregnancy that followed her first miscarriage, psychologist Julie A. Sell-Smith (Sell-Smith & Lax, 2013) conducted a statistical study on depression and anxiety in pregnancy subsequent to miscarriage. When the study failed to show significant results and Sell-Smith suffered additional pregnancy losses herself, she moved ‘from positivism to autoethnography’ (Sell-Smith & Lax, 2013), adding a different methodological layer of sense to the data and pleading for a multiple method approach. Other scholars have shown how experiences of infertility, pregnancy loss, and grief have impacted their academic work. In the introduction to her pioneering study, Linda L. Layne (2003, p.4) recalled a conference where she spoke while pretending not to have just learned that her baby had just died in utero. Layne just did not want her professional life, too, to collapse. Similarly, Indira Arumugam (2023) describes the efforts as well as the failures to separate her personal struggles with infertility from her professional work as an ethnographer of fertility rituals. Elaborating on one’s personal involvement in research touches upon the growing debate on researcher vulnerability (Clift et al., 2023). Although nowadays the epistemic potential of including the researcher’s subjectivity in research is recognised, the many risks of allowing and revealing one’s own vulnerabilities (Behar, 2022)—as female, childless, bereaved, reproductive body, or other—towards research participants, an academic or more public audience have not been fully understood (Dickson-Swift et al., 2007). While the epistemic value of subjective involvement has been highlighted (Ploder, 2022), others like Arumugam (2023, p.42) doubt ‘whether probing personal trauma for theoretical value is sustainable as a prolonged research practice’ (see also Reed & Towers, 2023). Second, researchers should reflect on how they imagine and define the research participants. In what sense are they vulnerable, and how are they approached accordingly? According to the problems arising from reproductive loss indicated above, the participants might be framed as subjects, women, patients, intended parents or parents bereaved by baby loss, as victims, peers, or pioneers in pregnancy loss awareness activism, as wretched and suffering from the ‘worst that can happen in life,’ or being ‘incredibly strong.’ The notions of these framings find their way into the calls for participation or the questions we ask, thus influencing who

308  Handbook of sensitive research in the social sciences feels addressed and participates in the research. At the very beginning of my research on the experiences of miscarriage and stillbirth in Germany (Böcker, 2022), I addressed potential interviewees as bereaved parents whose loss was severe and unacknowledged. In doing so, those who did not or struggled to identify as parents and those who did not (want to) consider themselves disenfranchised did not answer my call. One interviewee strongly conveyed that she did not want to be considered disadvantaged. Then I rewrote the call for participation, which had addressed potential research partners as pitiful beings who need to talk, to a call for participation saying that I needed research partners to talk to me—and got considerably more responses after that. Ideas and stereotypes about participants also affect how we deal with the data. I analysed my interviews within a research group where we once discussed an interview with a woman who had told her story very clearly and calmly. One group member assumed a pathological repression and judged her untrustworthy. This perception revealed more about his expectation of how a grieving woman after stillbirth should talk than about the actual empirical case. It is important, therefore, that researchers, third, reflect on the researcher-researched relationship and think about how they contribute to it. How do they communicate and build an authentic and professional relationship? Just like ethical approval, building rapport is an ongoing process, too. One time, I had to postpone an interview about bereavement in fertility treatment because I had no babysitter. I was aware of how triggering the information about someone having a baby could be, especially when one was expected to lay bare feelings of loss and isolation. However, I had been told the interviewee ‘has a little baby now,’ so, after careful weighing, I decided to disclose the reason for my cancellation. Indeed, during our interview, the interviewee referred to that message when talking about negative feelings: ‘Things like what you have said, you have a babysitter, were a stab in the heart.’ At other times, interviewees would ask about my wish for a child, my birth experiences and my losses—another cause for concern regarding how to communicate honestly and sensitively while at the same time protecting personal boundaries. In an interview in an early research phase, a woman who had cancer, an unfulfilled wish for a child, and many regrets of ‘missing her own life’ asked me about my wish for a child. It was the end of a long and moving interview, and I answered honestly that I had none (yet). At the same time, as we both knew, I was relatively young and healthy and still had all the opportunities to reproduce. I immediately felt my worry-free answer had made her feel ashamed, but she appreciated my honesty. We liked each other and loosely stayed in contact. Yet, years later, when I told her I had a son, she never replied again. On the contrary, I did not reveal much about myself in an interview with a man who had come to reframe the mutual abortion of his former girlfriend ten years before the interview as the murder of their son. I neither wanted to relate any further nor risk the interview rapport by moral dissent. Disclosures—such as having a baby, having had an abortion, or a natural birth without problems—can reveal differences and negatively affect the (perceived) power balance between the researcher and the researched. On the other hand, vulnerability, authenticity, and honesty can pave the way for understanding and closeness. Wanda Pillow (2003, p.182) has highlighted the complexities of doing engaged qualitative research by showing how researchers ‘fall into seeking similarities’ between them and the subject driven by the desire to be close to them. A different position than having something in common or sharing a similar experience is that of being a witness to the story of an other (Pillow, 2003). In this context, it is worth thinking about what people gain from participating to understand what we can give back to them. Many studies have discussed the therapeutic effect of

Against and with the silence: language, relations and methods in qualitative research  309 qualitative interviews (see Rossetto, 2014). For instance, Buckle and colleagues (2010) stressed the positive effects of qualitative interviews and criticised a false protection by research ethics boards, arguing, ‘[i]nstead of thinking that a research interview which explores the complex, personal issues of grief would potentially harm participants, it may be seen as potentially beneficial to participants’. Similarly, Kerry Jones (2013, p.121) has reported a respondent’s ‘sense of relief about being able to talk about a member of their family (deceased child) without being reprimanded or being considered morbid’. Speaking about the experiences is a way to make sense of what happened and recreate a biographical narration. Apart from personal reasons, many participate ‘to raise awareness and educate others by making their voice public through the researcher’ (p.118). Or as Susannah H. Leisher (2022, p.1741) has put it in her personal commentary on respectful stillbirth care: ‘We participate in surveys because we want our voices heard and our babies’ deaths to count’. This leads to the question of how researchers represent their findings and participants. For Leisher (2022, p.1742), for instance, it is a human right that stillborn babies are seen as newborn babies by health workers and researchers. We might not always support the wording or claims made by our respondents. Sometimes, we might not like them. Yet, one way to show respect is to find a suitable form of representation, one through which people feel their voices were heard and their perspectives understood—even if they differ from one another and from the researcher’s point of view. Although figuring out is additional work, researchers might consider context-specific returns, such as sending the audio file upon request, providing specific literature, information, or contacts for support when interviewees are interested in them. Middlemiss (2024) let her respondents choose if they wanted to have their real names published in the study—almost all her respondents chose this option. Some interviewees asked for personal information about me and my life, out of interest but also to equalise the balance of personal information, intimate feelings, and vulnerability they shared with me during the interview—which I was usually was happy to give. Another option is to ask respondents what they think an adequate form of appreciation for their participation would be. Even if the wished-for compensation eventually cannot be provided, the question still might be appreciated, and the answers might inform future compensation practices.

METHODS OF DATA COLLECTION AND ANALYSIS In the following, thus, some adjustments to methods of collecting verbal data, as well as methods expanding the limits of language, will be presented. Within the last two decades, the number of personal accounts by people who have shared their experiences online has vastly increased. There are thousands of first-hand accounts, such as threads in online bereavement groups, grief blogs or vlogs, and online memorial sites including photographs, personal accounts, poetry, music, and more, that also can be considered for data analysis. This brings about ethical challenges on how to deal with, cite, and represent quotes from the internet that were available in public or semi-public spaces but not intended for research purposes (Snee, 2013). Yet, naturally occurring data has the potential to include rare voices (Drewett & O’Reilly, 2023) which, as indicated above, would not have been prompted by researchers. However, natural data must be analysed in context, too. Following the communicative script of gaining social media attention, influencers, for instance, most

310  Handbook of sensitive research in the social sciences probably share their story of pregnancy loss more openly if, as indicated above, they own the agency and strength to tell their story. Interviews and Conversations Talking to research subjects will, however, probably remain an important method of gaining data since forms of narrative enquiry allow respondents to stay close to their experience (Jones, 2013). An aspect to consider is the point in time respondents are approached. The criteria of recruitment in the study by Jones (2013, p.118) ‘ensured that they were not approached around the time of significant anniversaries or if the death occurred less than six months prior.’ Before or after interviewing, contact details of supportive organisations and service providers should be made available to research participants. The creation of an appreciative and safe space where interviewees feel good, welcomed, listened to, and heard is a matter of course in qualitative social research. For instance, interviewees should be asked where they would like to be interviewed: at home, in a public place like a café, or in an institutional setting (in the hospital or university, for instance). These decisions can also be included as data, revealing something about the space that is chosen to talk about loss experiences. In this field, though, a shared language on the topic is a complex issue, and the research participants’ capabilities to talk about it might be limited. The experiences might be liminal and hard to put into words since there are no commonly established terms and narratives. Moreover, it might be hard to speak about emotions, particularly negative ones. This is why, in the beginning of my interviews, I used to say that I might cry with them but still could listen and cope with what they say. This created a sense of relief and shared vulnerability where showing emotions was allowed for both of us and, at the same time, I, the researcher, would be the one taking responsibility to hold the space. As a response, metaphor analysis has been used as a tool ‘for exploring experiences that are not widely shared as it frequently involves the use of something that is familiar, tangible or common to describe something that is unfamiliar’ (Littlemore & Turner, 2019, p.2). For this reason, they are prevalent when people talk about emotionally difficult and hard-tounderstand experiences such as pregnancy or baby loss. For Norwood (2021, p.113), metaphor is ‘a precision instrument for probing, magnifying and capturing the precious and fleeting sensations, thoughts and experiences of parenthood cut short, and making these tiny moments robust enough to withstand being brought out into the social world.’ Stories told after the loss of a baby, Norwood argues, are a means ‘towards a re-enfranchised experience of mourning’ (p.113). In this sense, methodological approaches that evoke or develop narratives can be a means for respondents to create a (new or other) social sense of their experiences. The narrations might appear incoherent, disrupted, or incomplete (just like the experiences). Approaches such as ethnomethodology, conversation analysis, and some hermeneutics take the breaches—caused by emotionality—in verbal interaction into account. Hesitation, pauses, silences, non-verbal expressions, and breathing are transcribed and considered in their analysis. It literally takes a deep breath to say something challenging. For example, in my study, one interviewee hesitated to say ‘baby’ since—as detailed analysis later showed—she had internalised the notion that a miscarriage at six weeks of gestation does not mean losing a baby. It is also important to decide how to present fractured accounts. Jones (2013, p.119), for instance, decided to present the accounts of parents bereaved by the death of their child

Against and with the silence: language, relations and methods in qualitative research  311 following stillbirth and neonatal death ‘with all of the ‘erms’, ‘ums’ and ‘ye know?’ and ‘it were like’ of respondents’ regional accents which formed a part of their everyday conversation. To delete such words would feel like deleting an aspect of a lived experience.’ Respondents and other members of the field, though, might not be used to this style of representation and might feel not eloquent. Although these stories are difficult to listen to, to transcribe (especially alone), and to read, Jones argues for an ‘ethics of listening’ (Jones, 2013, p.120). Other grief scholars, too, have stressed the feeling that the norm is to tell a happy story with a ‘good ending’ (Jakoby & Anderau, 2020) that runs counter to the actual experiences of disruption and absence. A further limitation of interview methods is that capacities to verbalise feelings and experiences are unequally distributed. Marginalised people, as well as individuals facing language barriers, such as migrants and travelling communities, are less often asked and heard, less practised in and convinced of ‘telling their story’ to alien researchers, which is why even less light is shed on more marginalised experiences of loss. This is why research methods that rely less on established forms of communication, such as auto/ethnographies and visualising methods, could be useful. Auto/Ethnographies As indicated above, autoethnography and autotheory bear the possibility of expanding the limits of language. In autotheoretical writing, personal experiences are brought into dialogue with theoretical ideas or concepts, poetry, lyrics, pictures, or other additional fragments that mutually stimulate and complement each other rather than following a strict reasoning. To represent the broken pieces of remembrance, Wyatt (2008), for instance, applies the Deleuzeian idea of ‘stammering’ in his autoethnographic account of mourning the loss of his father. Gayle Letherby (2015) connects her experiences of grief and griefwork following the death of her parents, her husband, and her involuntary childlessness with her academic work and, in doing so, adds a different way to tell a story to the repertoire of academic writing techniques. As mentioned above, there are many autoethnographic studies in the field of infertility, pregnancy loss and perinatal bereavement (Adrian, 2020; Davidson, 2011; Layne, 2003; Reagan, 2003; Sell-Smith & Lax, 2013; Sheach Leith, 2009; Weaver-Hightower, 2012). Bethan Michael-Fox (2022) offers a series of practical writing activities to develop personal and reflective writing skills for developing an ‘autothanatography,’ a writing approach to examine one’s own relation to death and the self (see Chapter 24). In their ethnographic study on the role of imaging technology in foetal and neonatal autopsy for the experiences of professionals and the bereaved, Reed and Ellis (2019, p.211) have adopted go-along ethnography in a hospital in the UK. They conducted mobile interviews and observations with professionals in their working environments ‘to capture the fluid nature of postmortem practice’ and situate it in the wider context of grief and memorialisation (see also Reed et al., 2023). In doing so, the authors follow recent empirical approaches that centre on the processual and changing character of pregnancy loss, grief, and remembering and where ethnographers follow the objects, actors, and feelings and describe them, for instance, as trajectories of care (‘careographies’: Siegl, 2024) or ‘emotional choreographies’ (Adrian, 2015). With their turn towards practices, death and bereavement scholars have increasingly examined the role of material culture, such as objects, techniques, and places, for mourning and memorialisation (Hockey et al., 2010). Studies on memorialisation and bereavement after

312  Handbook of sensitive research in the social sciences pregnancy or perinatal loss have highlighted the meaning and importance of, for instance, memorial services (Smith, 2013), post-mortem photography (Martel & Ives-Baine, 2014), memorial objects (Layne, 2003, p.103), virtual cemeteries or video blogs as means for continuing bonds with the deceased as well as for social memory-making. A special value is, of course, attributed to the physical body or remains of the lost baby, foetus, or tissue (Mitchell, 2016; Reed et al., 2023; Siegl, 2024). Feminist scholarship has offered detailed discussions on the material ontologies of the foetal body, its preliminary stages, and remains (Middlemiss, 2024). Considering the significant role of materiality and the limitations of ‘speaking about mentioned above, research on pregnancy loss and perinatal bereavement highly benefits from turning towards objects and practices relevant in people’s everyday living, working, and mourning. Visualising Methods To counter the limits of language and to mitigate the emotional hardships of thinking and talking about pregnancy loss and bereavement, visual and creative methods can be powerful tools to expand knowledge (see the chapters in Part 2 of this volume). Li-Wen Shih (2023), for instance, has examined women’s experiences of early pregnancy loss through participant drawing, a method she first applied in her research on the experiences of Taiwanese pregnant women who underwent prenatal screening and testing (Shih & Schrøder, 2023). The drawings the women were asked to do and explain afterwards helped to understand the women’s emotions and situatedness (that is, how they felt regarding the embryo). Apart from offering insights, visualisation can also be a powerful mode to represent the findings. Weaver-Hightower (2017, p.226) has designed a research comic about one father’s perinatal loss of twins when he found that ‘standard qualitative writing could not adequately convey everything in Paul’s [the father’s] story’.

CONCLUSION AND FUTURE DIRECTIONS As the chapter has shown, there are no ready-made solutions for sensitive and appropriate language use. In my research in the German-speaking field of pregnancy loss and perinatal bereavement, I often have not been sensitive to my respondents due to a lack of awareness and knowledge that I shared with the wider society. Researchers can develop a stance of sensitive awareness and a mode of doing and adjusting research sensitively. Not least through collaborative formats of reflection, researcher vulnerability, and academic care, they can try to share and examine their assumptions and aims and learn to fully understand the research subjects’ views—even if they might differ from their own expectations. There are not just epistemological reasons for frequent reflection and adjustment in the research process since the conflicts, failures, and communicative unease reveal substantial dimensions of people’s experiences of loss and perinatal bereavement. These reflections are needed also by researchers who fear personal and academic failure, ethical misconduct, or public reactions. Collaborative ways of peer support, supervision, and fostering caring communities could improve academic selfcare (Schulz et al., 2023) and, at the same time, allow for critical reflection, working on one’s own attitude and position, and notable adjustments to the research process.

Against and with the silence: language, relations and methods in qualitative research  313 There also seem to be shifts in social science research foci and epistemologies. One focus moves from the lost embryo or foetus to those affected by reproduction. Apart from meanings and narrations, emotions and embodiment surrounding pregnancy loss are considered. Sense-making, too, is not only studied through narrations but increasingly through practices and artefacts. Visual and ethnographic approaches that consider practices and (absent) materialities like bodies, documents, and other artefacts can put ‘something into words, which did not exist in language before’ (Hirschauer, 2006, p.413). Ethnographic methods can thus shed light, for instance, on clinical care, interactions, and procedures during and after the loss or on the long-term process of mourning and memorialisation. For this, a discussion is needed on how these sensitive areas of ethnographic research ‘require other modes of “being-with”, witnessing and participating’ (Rehsmann & Siegl, 2022, p.8). The shifts towards subjectivity, emotionality, relationality, processuality, and contextuality of loss experiences and their materiality allow us to think of pregnancy loss as ‘a loss multiple’ in the sense of Annemarie Mol (2003), whose ‘body multiple’ owns no ontological substance but appears and exists only within its different relational practices. Research is one relational practice in which pregnancy loss exists as a social phenomenon – which is why we should thoroughly reflect on how we bring it into social existence. This is likely to be relevant to the lived experiences of very many people around the globe.

ACKNOWLEDGEMENT I would like to thank Aimee Middlemiss and Zoe Tongue for the valuable feedback on the manuscript and the encouragement to include my own voice.

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Against and with the silence: language, relations and methods in qualitative research  315 Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. London: Sage. Limbo, R. (2012). Caring for families experiencing stillbirth: A unified position statement on contact with the baby. Illness, Crisis & Loss, 20(3), 295–298. https://doi​.org​/10​.2190​/ IL​.20​.3​.f. Lind, E. R. M. (2017). Introduction. Toward a feminist epistemology of loss. In E. R. M. Lind & A. Deveau (eds), Interrogating pregnancy loss: feminist writings on abortion, miscarriage, and stillbirth (pp.1–17). Ontario: Demeter Press. https://doi​.org​/10​.2307​/j​.ctt1wf4cfb. Littlemore, J. & Turner, S. (2019). What can metaphor tell us about experiences of pregnancy loss and how are these experiences reflected in midwife practice? Frontiers in Communication, 4, 42. https:// doi​.org​/10​.3389​/fcomm​.2019​.00042. Lupton, D. (2013). The social worlds of the unborn. London: Palgrave Macmillan UK. Martel, S. L. & Ives-Baine, L. (2014). ‘Most Prized Possessions’: Photography as living relationships within the end-of-life care of newborns. Illness, Crisis & Loss, 22(4), 311–332. https://doi​.org​/10​.2190​ /IL​.22​.4​.d. Michael-Fox, B. (2022). Practising creative and autobiographical writing: Writing, death and the self. In R. Povall & O. Mat (eds), Borrowed time: on death, dying & change (pp.325–338). Dartington: Art.Earth. Middlemiss, A. L. (2024). Invisible labours. The reproductive politics of second trimester pregnancy loss in England. New York and Oxford: Berghahn Books. Middlemiss, A. L. & Kilshaw, S. (2023). Further hierarchies of loss: Tracking relationality in pregnancy loss experiences. Omega Journal of Death and Dying. https://doi​.org​/10​.1177​/00302228231182273. Mitchell, L. M. (2016). ‘Time with Babe’: Seeing fetal remains after pregnancy termination for impairment. Medical Anthropology Quarterly, 30(2), 168–185. https://doi​.org​/10​.1111​/maq​.12173. Mol, A. (2003). The body multiple. Ontology in medical practice. Durham, NC: Duke University Press. Murphy, S. (2016). Bereaved parents: A contradiction in terms? In S. Earle, C. Komaromy & Linda Layne (eds), Understanding reproductive loss. Perspectives on life, death and fertility (pp.117–127). New York: Routledge. Norwood, T. (2021). Metaphor and neonatal death: How stories can help when a baby dies at birth. Life Writing, 18(1), 113–124. https://doi​.org​/10​.1080​/14484528​.2021​.1871705. Norwood, T. & Boulton, J. (2021). Reconciling the uniquely embodied grief of perinatal death: A narrative approach. Religions, 12(976). https://doi​.org​/10​.3390​/rel12110976. Obladen, M. (2021). Oxford textbook of the newborn: A cultural and medical history. Oxford: Oxford Textbooks in Paediatrics. Obst, K. L., Due, C., Oxlad, M., & Middleton, P. (2020). Men’s grief following pregnancy loss and neonatal loss: a systematic review and emerging theoretical model. BMC Pregnancy Childbirth, 20(11). https://doi​.org​/10​.1186​/s12884​- 019​-2677​-9. Paisley-Cleveland, L. (2013). Black middle-class women and pregnancy loss. A qualitative inquiry. Lanham: Lexington Books. Peel, E. & Cain, R. (2016). ‘Silent’ miscarriage and deafening heteronormativity: A British experiential and critical feminist account. In S. Earle, C. Komaromy & Linda Layne (eds), Understanding reproductive loss. Perspectives on life, death and fertility (pp.79–91). New York: Routledge. Pillow, W. (2003). Confession, catharsis, or cure? Rethinking the uses of reflexivity as methodological power in qualitative research. International Journal of Qualitative Studies in Education, 16(2), 175– 196. https://doi​.org​/10​.1080​/0951839032000060635. Ploder, A. (2022). Strong reflexivity and vulnerable researchers. On the epistemological requirement of academic kindness. Queer-Feminist Science & Technology Studies Forum, 7, 25–38. https://queersts​ .com ​/wp​-content​/uploads​/2022​/12​/ Forum​-7​-2020 ​-25​-38​-Ploder​.pdf. Quenby, S., Gallos, I. D., Dhillon-Smith, R. K., Podesek, M., Stephenson, M. D., Fisher, J., Brosens, J. J., Brewin, J., Ramhorst, R., Lucas, E. S., McCoy, R. C., Anderson, R., Daher, S., Regan, L., Al-Memar, M., Bourne, T., MacIntyre, D. A., Rai, R., Christiansen, O. B., Sugiura-Ogasawara, M., Odendaal, J., Devall, A. J., Bennett, P. R., Petrou, S., & Coomarasamy, A. (2021). Miscarriage matters: the epidemiological, physical, psychological, and economic costs of early pregnancy loss. The Lancet, 397(10285), 1658–1667. https://doi​.org​/10​.1016​/S0140​- 6736(21)00682-6. Ramírez Herrera, J. (2023). The bio-art history of care: mummy-sculptures of the Atacama desert. Sculpture Journal, 32(2), 157–174. https://doi​.org​/10​.3828​/sj​.2023​.32​.2​.02.

316  Handbook of sensitive research in the social sciences Reagan, L. J. (2003). From hazard to blessing to tragedy: Representations of miscarriage in twentiethcentury America. Feminist Studies, 29(2), 357–378. http://www​.jstor​.org​/stable​/3178514. Reed, K. & Ellis, J. (2019). Movement, materiality, and the mortuary: Adopting go-along ethnography in research on fetal and neonatal postmortem. Journal of Contemporary Ethnography, 48(2), 209– 235. https://doi​.org​/10​.1177​/0891241618769997. Reed, K., Ellis, J., & Whitby, E. (2023). Understanding baby loss. The sociology of life, death and postmortem. Manchester: Manchester University Press. Reed, K. & Towers, L. (2023). Almost confessional: managing emotions when research breaks your heart. Sociological Research Online, 28(1), 261–278. https://doi​.org​/10​.1177​/13607804211036719. Rehsmann, J. & Siegl, V. (2022). The beginnings and ends of life as a magnifying glass for ethnographic research. Introduction to the Special Issue. Curare. Zeitschrift für Medizinethnologie / Journal of Medical Anthropology, 45(2), 7–16. Rossetto, K. R. (2014). Qualitative research interviews: Assessing the therapeutic value and challenges. Journal of Social and Personal Relationships, 31(4), 482–489. https://doi​.org​/10​.1177​ /0265407514522892. Riggs, D. W., Pearce, R., Pfeffer, C. A., Hines, S., White, F. R., & Ruspini, E. (2020). Men, trans/ masculine, and non-binary people’s experiences of pregnancy loss: an international qualitative study. BMC Pregnancy and Childbirth, 20(1), 482. https://doi​.org​/10​.1186​/s12884​- 020​- 03166​- 6. Rowlands, I. J. & Lee, C. (2010). ‘The silence was deafening’: social and health service support after miscarriage. Journal of Reproductive and Infant Psychology, 28(3), 274–286. https://doi​.org​/10​.1080​ /02646831003587346. Sell-Smith, J. A. & Lax, W. (2013). A journey of pregnancy loss: From positivism to autoethnography. The Qualitative Report, 18(46), 1–17. https://doi​.org​/10​.46743​/2160​-3715​/2013​.1441. Schulz, P., Kreft, A.-K., Touquet, H., & Martin, S. (2023). Self-care for gender-based violence researchers – Beyond bubble baths and chocolate pralines. Qualitative Research, 23(5), 1461–1480. https://doi​.org​/10​.1177​/14687941221087868. Sheach Leith, V. M. (2009). The search for meaning after pregnancy loss: An autoethnography. Illness, Crisis & Loss, 17(3), 201–221. https://doi​.org​/10​.2190​/ IL​.17​.3​.c. Shih, L.-W. (2023, 24–25 August). Rearticulation of ‘Hsiao-Chan’ (miscarriage, lit. small birth): Taiwanese women’s situated knowledges of pregnancy, life and loss [Paper presentation]. Reproductive Technologies and the Remaking of Life and Death, Copenhagen, Denmark. Shih, L.-W. & Schrøder, T. H. (2023). Enacting up: using drawing as a method/ology to explore Taiwanese pregnant women’s experiences of prenatal screening and testing. Feminist Theory, 24(4), 512–534. https://doi​.org​/10​.1177​/14647001211062733. Siegl, V. (2024). Not-Quite-Dead. Ontological careographies and the ambiguous fetal body in the context of disability-selective pregnancy termination. Medical Anthropology, 43(7), 569–582. https:// doi​.org​/10​.1080​/01459740​.2024​.2410249. Smith, B. L. (2013). Narratives of sorrow and dignity: Japanese women, pregnancy loss, and modern rituals of grieving. Oxford: Oxford Ritual Studies Series. Snee, H. (2013). Making ethical decisions in an online context: Reflections on using blogs to explore narratives of experience. Methodological Innovations Online, 8(2), 52–67. https://doi​.org​/10​.4256​/ mio​.2013​.013. Weaver-Hightower, M. B. (2012). Waltzing Matilda: An autoethnography of a father’s stillbirth. Journal of Contemporary Ethnography, 41(4), 462–491. https://doi​.org​/10​.1177​/0891241611429302. Weaver-Hightower, M. B. (2017). Losing Thomas & Ella: A father’s story (a research comic). Journal of Medical Humanities, 38, 215–230. https://doi​.org​/10​.1007​/s10912​- 015​-9359​-z. Werner-Lin, A. & Moro, T. (2004). Unacknowledged and stigmatized losses. In F. Walsh & M. McGoldrick (eds), Living beyond loss. Death in the family (pp.247–271). New York: Norton. Wyatt, J. (2008). No longer loss: Autoethnographic stammering. Qualitative Inquiry, 14(6), 955–967. https://doi​.org​/10​.1177​/1077800408318324.

22. Researching with individuals/couples undergoing IVF treatments: ethical, practical and methodological insights from within the field Catarina Delaunay, Amélia Augusto, Mário J. D. S. Santos and Luís Gouveia

INTRODUCTION In the realm of assisted reproductive technologies (ART), the landscape of research is as intricate and nuanced as the experiences of the individuals and couples undergoing in vitro fertilisation (IVF) treatments. Drawing from a concluded research study—the ETHICHO project—this chapter delves into the multifaceted dimensions of researching within this distinctive field, shedding light on the ethical considerations, practical challenges, and methodological insights that researchers must grapple with. We base our analysis on empirical experience in the context of this mixed-methods research project conducted in Portugal between October 2018 and September 2022. The focus of the study was on the lay and expert meaning-making about the embryos created in vitro, that is, in a laboratory setting, in the realm of ART treatments. This R&D project was funded by the Portuguese Funding Agency, [Fundação para a Ciência e a Tecnologia] (Grant No. PTDC/ SOC-SOC/29764/2017). We begin with short background information about the research topic and the study population. The responsibility for deciding the fate of surplus embryos conceived through in vitro fertilisation lies with the couples or individuals who initiated the parental project by signing an informed consent at the beginning of treatments. If prospective parents do not want to use them in a new IVF cycle, they are tasked with the decision of either donating these extra embryos to other beneficiaries or for scientific research, or opting for their discard. These individuals, often grappling with societal prejudices and judgements related to factors such as infertility, sexual orientation, or single parenthood, find themselves in difficult and overwhelming situations that demand qualities like self-reflection, agency, and autonomy concerning their reproductive choices. IVF treatments involve expectations, serial failure, uncertainties, and starting over (Delaunay, 2017a), given the low success rates of the techniques, especially as the woman’s age increases. As we discussed elsewhere, besides emotionally dealing with the success or failure of the treatments, IVF patients also have to manage their feelings in the process of bonding and attachment with their supernumerary embryos throughout their therapeutic trajectory (Delaunay et al., 2023). In addition, as a result of the absence of public or semi-public debates around IVF embryos’ statuses and meanings, besides legal and ethical ones (Delaunay et al., 2023), the context of the interview constitutes a favourable moment for

317

318  Handbook of sensitive research in the social sciences (prospective) parents to express and manage their emotions, ambiguities, and complex feelings towards this technoscientific entity. The journey through the world of IVF social research thus demands a critical reflexive stance, particularly when exploring the concepts of vulnerability and sensitivity. Understanding the delicate nature of fertility treatments and the emotional rollercoaster that accompanies them requires researchers to navigate ethical and methodological terrains with rigour and accountability, but also empathy and understanding. This chapter emphasises the imperative for scholars to critically reflect on these aspects, recognising the impact of their work on the lives of ART users, as well as the impact of participants’ narratives and emotions on the researcher’s wellbeing. When exploring the subjective experiences of health, illness, and care, given the complex social dimensions involved, the qualitative approach—where data is mainly produced through the interaction between the researcher and participants—may offer a more comprehensive set of data (Liamputtong, 2020). However, qualitative methods, such as interviewing and ethnography, may simultaneously exert a direct impact or interference on both participants and the intended research topic. There is a consensus that, rather than attempting to make their presence unnoticed and insignificant, the researcher should strive to identify and assess the impact of a given research technique, keeping this in mind throughout the reflexive and analytical process (May, 2001). One of the primary challenges faced by researchers when engaging in this field of study is the classification of ART users as a hard-to-reach population, particularly in the context of quantitative studies. Traditional research methodologies often struggle to capture the twists and turns of the IVF experience, highlighting the need for innovative and contextually sensitive approaches. As we embark on this exploration, we will delve into the intricacies of quantitative studies within this unique demographic, acknowledging the complexities that arise when attempting to recruit participants and quantify deeply personal and emotionally charged experiences. Central to our discussion is the process of building the researcher-participant relationship, a dynamic that requires careful nurturing. This chapter explores the nuances of establishing rapport and trust within the context of IVF social research, emphasising the importance of a sensitive and emotionally engaged researcher. It delves into the challenges of connecting with individuals and couples navigating the complex terrain of fertility treatments, recognising the researcher’s role as both a listener and a participant in their journeys. Furthermore, we examine the critical need to reflect upon the researcher’s positionality, acknowledging factors such as gender identity and power dynamics. As researchers, our own identities shape the lens through which we perceive and interpret the experiences of others, but they can also impact the researcher–participant relationship. This chapter underscores the significance of acknowledging and critically engaging with the positionality of the researcher to ensure a nuanced and empathetic understanding of the subject matter (see the chapters in Part 2 of this volume). Finally, we explore the methodological challenges inherent in conducting joint interviews with couples undergoing IVF treatments. The complexities of common experiences, intertwined emotions, and varying perspectives within couples demand a thoughtful approach to data collection. We scrutinise the intricacies of conducting joint interviews, offering insights into the methodological adaptations necessary to capture the depth and richness of these shared narratives.

Researching with individuals/couples undergoing IVF treatments  319 As we embark on this journey through the ethical, practical, and methodological dimensions of researching the plural experiences of IVF treatments, this chapter serves as a guide for academics, researchers, and practitioners seeking to navigate the uncharted territories of assisted reproductive technologies with sensitivity, integrity, and scholarly rigour.

METHODOLOGICAL PROTOCOL AND DATA COLLECTION PROCESS To better frame the discussion, we begin by describing in general terms the methodological protocol and the data collection process. The choice of a mixed-methods approach—combining a survey questionnaire, interviews, and ethnography—was guided by the specific objectives of this study, recognising the complexity and multidimensionality of the research topic (Bryman, 2006). Opting for this comprehensive approach to data collection aimed at enhancing the understanding of the various perspectives on the human IVF embryo, as perceived by both ART users and professionals, and how these meanings circulated between them and evolved over time. Employing diverse methods concurrently increases the likelihood of revealing unforeseen outcomes and preventing data redundancy (Bryman, 2006). The survey was accessible online from 28 October 2019 to 31 January 2020. It was distributed through various channels, including a patient organisation (Portuguese Fertility Association), LGBT associations (ILGA and Rainbow Families), and a social network platform (Facebook). Nevertheless, only 85 respondents filled in the questionnaire survey. Between 5 September 2019 and 20 January 2021, we conducted 69 interviews with both couples and individuals, the great majority being women. Interviewees were recruited via social media and informal contacts. Not only were the two types of inquiry—survey and interviews—carried out autonomously, but they were also based on two distinct convenience and snowball sampling processes. Thus, no interviewee was invited to fill out the survey questionnaire, and vice versa. Although our two samples were intentional and non-probabilistic, we were able to gather a diverse range of ART user profiles, including sole motherhood and same-sex parenting. The primary challenge in terms of internal variety within both samples pertained to the gender dimension: the survey respondents comprised 83 women and two men, while from the 69 interviews (with a total of 74 interviewees), only six participants were men (five in couple interviews and one in a solo interview). In all cases, the participants identified themselves as cisgender. Acknowledging the sensitivity of our subject matter and the potential vulnerability of participants, we were cognisant of the ethical and methodological challenges inherent in our research, which Aldridge (2014) has outlined. To mitigate these challenges, the qualitative aspect of the project, comprising semi-structured interviews with ART beneficiaries, was conducted by a team member experienced in addressing sensitive reproductive health topics through qualitative methodologies (Delaunay et al., 2020).

CONTRIBUTIONS TO CRITICAL REFLEXIVITY ON THE CONCEPT OF VULNERABILITY The literature emphasises the importance of ongoing reflexivity throughout the research process (Finlay, 2002a). Engaging in self-reflection and questioning one’s assumptions, biases,

320  Handbook of sensitive research in the social sciences and values is seen as an ethical and methodological imperative. This continuous reflexivity not only ensures the researchers’ awareness of their role but also contributes to the refinement of research methodologies. Critical reflexivity in research, particularly concerning the concept of vulnerability, has become increasingly recognised as a vital component of ethically sound and rigorous inquiry. In research, vulnerability should be perceived conjointly as an ontological state, an epistemological lens, and an ethical and methodological practice (Venäläinen, 2023; see Chapter 1). The role of reflexivity is acknowledged as one of the cornerstones of achieving ethical qualitative research practice, as it requires researchers to acknowledge and address their own vulnerability (Sterie et al., 2023; see Chapter 1). The exploration of vulnerability within the research process involves not only acknowledging the susceptibility of research participants but also scrutinising the researcher’s own positionality and potential impact on the studied individuals or groups. Each researcher is a unique individual, with a very personal set of lived experiences that inform their expectations and positionality (Sterie et al., 2023). The question of defining vulnerability in social science research and identifying its specific subjects, situations, and contexts, is complex and far from straightforward. In a research context, various criteria exist for defining individuals or groups deemed to be in vulnerable situations. This notion encompasses individuals with physical, psychological, and social vulnerabilities, including emotional stressors, as well as cognitive, language, or cultural barriers that restrict their ability to provide informed consent (Allen, 2002; Bracken-Roche et al., 2017; Levine et al., 2004; Moore & Miller, 1999; Phillips & Morrow, 2007; Shivayogi, 2013; Bond Sutton et al., 2003; UyBico et al., 2007; Ketefian, 2015; von Benzon & van Blerk, 2017). Some authors have even argued that participants in any research are vulnerable to some degree (Horowitz et al., 2002). This aspect becomes particularly relevant in sensitive research, as questioning individuals about their experiences related to sensitive topics is deemed to render the participants vulnerable (Alexander et al., 2018). The concept of vulnerability is not universal; it is relational and context-dependent, being socially constructed and connected to the specific circumstances of an encounter (von Benzon & van Blerk, 2017). This connection is related to the way power relations are constructed. Therefore, there is a need to appreciate the diverse contexts in which vulnerability manifests, as well as its relational, dynamic, and multidimensional nature. This includes considering cultural, social, economic, and political factors that shape the experiences of vulnerability for different groups. Researchers are encouraged to engage in a fine understanding of vulnerability that goes beyond a one-size-fits-all approach. Critical reflexivity on vulnerability requires an examination of intersecting identities and how they contribute to varying degrees of susceptibility (Nikidehaghani et al., 2023). From the viewpoint of (see Chapters 8 & 29), researchers should consider how factors such as race, gender, sexuality, and socio-economic status intersect to create unique experiences of vulnerability. This nuanced approach enhances the depth and accuracy of vulnerability assessments when conducting sensitive research. Therefore, while we assert that the population of our study can be categorised as vulnerable for various reasons, such as social stigma (Goffman, 1990 [1963]; Kleinman & Hall-Clifford, 2009) and biographical disruptions (Becker, 1997; Exley & Letherby, 2001), it is crucial to acknowledge the fluidity and ambivalence of this status. Vulnerability is not a stable or permanent state. It should be noted that ART users—and infertile people in particular—can also be perceived as empowered human beings carrying a ‘grammar of responsibility’ (Genard,

Researching with individuals/couples undergoing IVF treatments  321 1999) when deciding the fate of cryopreserved surplus embryos. It is important to critically examine their vulnerability, avoiding any type of reification given their active involvement in patient organisations (The Portuguese Fertility Association, for instance) or LGBT associations advocating for their interests, such as legal framework changes and improvements in healthcare practices (Delaunay, 2017b). Moreover, they have increased access to health information through various sources, particularly the internet, contributing to personal autonomy and empowerment. From a different angle, and according to previous literature, we can highlight the reported benefits of participating in qualitative research for those who are in a vulnerable state resulting from a distressed life experience (Castillo et al., 2011; McGrath, 2003). Studies have demonstrated that vulnerable research participants are open to discussing sensitive topics, often appreciating the chance to share their experiences (Newton, 2017). Participants in these studies indicated experiencing positive outcomes from their involvement, such as therapeutic benefits, catharsis, acquiring new knowledge, expressing altruism, feeling empowered, and gaining a fresh perspective or understanding of the event or experience being discussed (Alexander, 2010; Alexander et al., 2018). Specifically, interviews may offer beneficial contributions to those coping with extremely challenging healthcare situations, such as ‘catharsis, self-acknowledgment, sense of purpose, self-awareness, empowerment, healing and providing a voice for the disenfranchised’ (Hutchinson et al., 1994, p.161). Therefore, engaging in research can often prove to be a positive experience, although individuals may have varied reasons for joining a study and differing expectations regarding their participation. In the case of the present study, besides the opportunity to express and manage deep feelings or share personal stories, there is also the need to integrate a dimension of contributing to generate significant knowledge alongside a sense of self-empowerment for research participants and their perceived contribution to the common good. They achieve this by advocating for an improvement in institutional caregivers’ competencies and increased political awareness of ART-related issues through the mediation of the academic community. In addition to being regarded as key informants and having the chance to voice their opinions, individuals and couples participating in this research feel they can contribute to enhancing the treatment and wellbeing of numerous other ART users. In previous research projects, participants reported an improved ability to organise their understanding, feelings, and personal experiences related to the topics discussed with the researcher. They even expressed gratitude for the opportunity to reflect upon and discuss issues not typically subject to self-analysis. A research study, especially a qualitative one, can serve as a means to amplify the narratives of those who are most vulnerable or considered least powerful in society. By delving into the experiences of populations that have faced social discrimination or whose voices are under-represented in public discourse (such as infertile patients, single mothers, or members of the LGBTQ+ community), researchers contribute to the inclusion of traditionally marginalised groups in socio-economic and political agendas. The field of ART is heavily medicalised, entrenched in scientific and technological knowledge, and remains an area of expertise accessed primarily from a position of powerlessness and vulnerability by beneficiaries. Discussions surrounding ART and decision-making regarding the fate of surplus human embryos are still predominantly dominated by expert actors, both medical and non-medical (from the legal and bioethics fields, for example). This study holds the potential to promote citizen involvement in a more public debate, raising awareness of issues that concern us all. This can prevent these and other related matters from

322  Handbook of sensitive research in the social sciences being confined to expert monopolies. The ability to participate, engage, and stay informed is integral to exercising citizenship. Researchers can cultivate meaningful and mutually beneficial relationships with participants. But to accomplish that, it is important to overcome accounts of vulnerability that essentialise and homogenise vulnerability, and which fail to adequately recognise and respond to autonomy and agency (Roest et al., 2023). In the case of participatory research, empowering participants involves giving them agency, involving them in decision-making processes, and ensuring their voices are heard (Cornwall & Jewkes, 1995). Participant empowerment fosters a collaborative environment, enriching the research process with diverse perspectives.

SENSITIVITY: RESEARCH TOPICS WE MUST HANDLE WITH CARE The need for sensitivity in research is crucial, especially when exploring sensitive topics that have the potential to evoke strong emotions, suffering, or distress in participants. ‘Sensitive’ is an emotion-loaded term that is significant for an individual or a group, for personal, political, or social reasons (Markowska-Manistra & Górak-Sosnowska, 2022; see Chapter 1). Scientific literature emphasises the ethical and methodological considerations surrounding the handling of sensitive topics, urging researchers to approach these areas with care and mindfulness. Research may be classified as sensitive when it delves into emotionally charged events, the vested interests of powerful individuals, and aspects of human life considered private, intimate, or sacred, among various other issues (Alexander, 2010). Sensitive research centres on topics that could be perceived as personally intrusive or have the potential to cause distress and discomfort to participants (and/or researchers). Interviewing participants about potentially sensitive topics demands special skills and innovative techniques aimed at identifying ways to avoid potentially embarrassing situations. This is imperative to ensure the value and integrity of the research. The ethical responsibility of researchers when dealing with sensitive topics is of paramount importance. Ethical guidelines and regulations, such as those provided by institutional review boards (IRBs) and professional organisations (APA, 2017), emphasise the need for informed consent, anonymity, confidentiality, and debriefing procedures to mitigate potential harm to participants that may arise from the research. Researchers are encouraged to adopt practices that prioritise safety, trust, and collaboration (Brannen, 1988; Dickson-Swift et al., 2007; Elmir et al., 2011; Fahie, 2014). This approach includes providing clear information about the study, offering choice and control to participants, and being aware of potential triggers. The informed consent process is a key element in ensuring sensitivity in research. There is a need for researchers to clearly communicate the purpose of the study, potential risks, and the voluntary nature of participation (Flory & Emanuel, 2004). Seeking informed consent in a qualitative inquiry should be viewed as an ongoing process (Hutchinson et al., 1994), allowing participants to withdraw at any point without consequence. Through constant and open dialogue, participants should be encouraged to express any personal concerns they may have throughout the data collection process, especially regarding the potential risks and benefits of participating in the study. This is paramount to safeguarding participants’ autonomy and integrity (James & Platzer, 1999). Language choice is also crucial when discussing sensitive topics. The use of clear, nonexploitative, and non-judgemental language is recommended to minimise potential distress

Researching with individuals/couples undergoing IVF treatments  323 (Kavanaugh et al., 2006; Paoletti et al., 2013). This sensitive and supportive approach recognises the impact of words on participants and aims to create an environment that fosters understanding and collaboration. Furthermore, researchers should invest time in creating a safe and non-judgemental space where participants feel comfortable sharing their experiences. Building trust and rapport is crucial when researching sensitive topics. Literature suggests that establishing a trusting relationship with participants is foundational to obtaining accurate and meaningful data (Horowitz et al., 2002; Elmir et al., 2011). Researchers should always consider the potential emotional impact on participants, offering opportunities for follow-up conversations and, if needed, providing resources for further assistance by referring them to the appropriate organisations. While acknowledging the potential distress and suffering of participants in sensitive research, it is essential to recognise the productive potential inherent in such participation. Beyond questioning the level of the researcher’s interference and highlighting its potential problems, we emphasise how this involvement can indeed be productive, making visible the otherwise hidden and diverse social existence of IVF embryos (Delaunay et al., 2020). The interviews, as previously mentioned, can also serve as a coping strategy for managing participants’ own emotional states and be perceived as a self-empowered mechanism, enabling their statements to contribute to knowledge-building.

ART USERS: A HARD-TO-REACH POPULATION IN QUANTITATIVE STUDIES Several sociocultural barriers have been identified as affecting the recruitment and retention of vulnerable populations in social science research on sensitive topics. These barriers include distrust, suspicion, fears, or concerns about the research goals, and a lack of knowledge or awareness about the study’s requirements, timeframe, or potential interference with work, family, or personal responsibilities. Some of these challenges in participant recruitment and retention are well-documented in the existing literature (Chiang et al., 2001; Gemmill et al., 2012; Bonevski et al., 2014; van Wijk, 2014). Therefore, the use of standard recruitment methodology may not always be effective; strategies are context-dependent and it is recommended to adapt them to the specific needs and preferences of participants (Goedhart et al., 2021; Langer et al., 2021). This implies a trauma-informed approach based on trust, where methodological rigour is balanced with respect for the research participants’ experiences and vulnerabilities, ensuring their safety, comfort, and wellbeing (O’Brien et al., 2021). Within our research, we were confronted with the challenges posed by hard-to-reach populations in quantitative studies, particularly within the context of survey questionnaires. Exploring the reasons for the difficulties experienced in enrolling participants in the quantitative part of our study requires a nuanced understanding of the limitations associated with this research approach. Hard-to-reach populations are groups that are challenging to access or engage in research due to factors such as stigmatisation, social marginalisation, or a lack of trust in research institutions (Liamputtong, 2007; see Chapter 1). Survey questionnaires, by their nature, may be prone to social desirability bias, where participants respond in ways perceived as socially acceptable rather than expressing their true feelings or experiences. For hard-to-reach

324  Handbook of sensitive research in the social sciences populations, the fear of judgement or stigma may further exacerbate this bias, leading to skewed or incomplete data (Tourangeau et al., 2000). Quantitative studies aiming to include these populations face hurdles in obtaining accurate and meaningful data and may not be well-suited for acknowledging the inherent complexity of participants’ deeply personal experiences (Alasuutari, 2010; Dillman et al., 2014). Survey questionnaires, a common tool in quantitative research, often fall short in capturing the nuanced and emotionally charged aspects of participants’ biographical stories. Closedended questions, typical in survey designs, may oversimplify complex narratives, leading to a loss of richness and depth in the collected data. Therefore, standardised formats may not be conducive to exploring the intricate details and inherent subjectivity in individuals’ stories, and qualitative methodologies are better suited for that purpose (Denzin & Lincoln, 2018). In fact, in contrast to the survey, the interviewing part of our research was very engaging for ART users, and we had to opt not to conduct more interviews due to data saturation reasons (Bowen, 2008; Liamputtong, 2020), although we had a list of other potential participants. Another important aspect relates to how conducting community-based qualitative research involves different strategies. The ethical acceptability of a study is assessed by research ethics boards from an institutional standpoint. Current protocols and board guidelines for health and social care research focus on sample sizes, funding resources, recruitment strategies, and the confidentiality of the collected data (Flicker et al., 2007). When collaborating with patient organisations (in our case, the Portuguese Fertility Association) or civil society organisations (such as ILGA and Rainbow Families), obtaining permission from these community agencies is essential to gain access to target populations, even if the study has received approval from research ethics boards. A community member may serve as a peer-to-peer recruiter and also as a potential informant, sometimes with dual and conflicting roles.

BUILDING THE RESEARCHER-PARTICIPANT RELATIONSHIP The researcher-participant relationship stands at the core of any research endeavour, influencing the quality and depth of the data collected, and overall the validity of the research. When conducting qualitative research with the present features, it is even more crucial to give attention to how the relationship between the researcher and the participants is initiated, established, and fostered over time. At this point, we can retrospectively identify what the challenges were for enrolling the participants and how they were approached, but also what worked well and how the process was continuously improved. The initiation of the researcher-participant relationship is often marked by the initial contact between the researcher and the participants. The significance of transparency, clear communication, and ethical considerations during this phase has been emphasised in methods manuals (Bryman, 2016). Ethical guidelines and considerations play a pivotal role in shaping the dynamics of the researcher-participant relationship. More specifically, there is a need for researchers to navigate ethical challenges such as power differentials, confidentiality, and potential harm to participants. Moreover, establishing informed consent, articulating the research purpose, and addressing any concerns or questions contribute to building a foundation of trust, rapport, and cooperation between both parties. In sum, ethical research conduct ensures the relationship is built on principles of respect, justice, and beneficence (APA, 2017; Hennink et al., 2020).

Researching with individuals/couples undergoing IVF treatments  325 Trust is a cornerstone of the researcher-participant relationship and is gradually cultivated through ongoing efforts. Literature highlights the importance of building rapport through active listening, empathy, and demonstrating genuine interest in participants’ perspectives (Lincoln & Guba, 1985). Establishing trust also involves the researcher being transparent about their role, intentions, and the potential impact of the research (Creswell & Creswell, 2018). However, the researcher-participant relationship is not static; it evolves over time. It is important to maintain communication and transparency throughout the research process. Consistent engagement and feedback loops contribute to a dynamic and evolving relationship, ensuring that participants feel valued and respected across the duration of the study (Creswell & Poth, 2018). An infertility diagnosis and the necessity to resort to ART for conceiving a child can have a detrimental impact on the individual or couple, necessitating researchers to acknowledge and tactfully navigate the boundaries of their relationships with the subjects under study. Subsequently, researchers should formulate specific and effective adaptation strategies, taking vulnerability into account on a case-by-case basis. Conducting interviews with ART beneficiaries requires a high level of engagement from the researcher to facilitate the establishment of trust-based relationships. In the case of the present study, and in the absence of an institution or organisation to mediate the recruitment process, a public call for participants was disseminated on online social networking websites through the researcher’s personal profile. One might argue that recruiting participants for a research project on such a sensitive topic would necessitate a formal, institutional presentation of aims and methods. However, maintaining an informal tone in all communications and adopting a personal rather than an institutional identity appeared to cultivate closer relationships between the interviewer and potential interviewees. Indeed, establishing such close and informal relationships before the face-to-face interview allowed for detailed and comprehensive informed consent—an ongoing process (Hutchinson et al., 1994)—that extended beyond the formal, circumscribed, and rather limited moment of explicit acceptance at the beginning of the interview. In most cases, by the time the interview took place, the interviewer was no longer a stranger and already had some knowledge of the story the interviewee intended to share. When initiating the recruitment process through online channels, particularly social media platforms and dedicated assisted reproductive technology (ART) user groups, the researcher transparently communicated the project’s goals, the interview scope, and his identity. Initial interviews were conducted with individuals connected to the researcher, either personally or through common friends. This approach triggered a snowball sampling effect, establishing the researcher as a trusted point of contact and facilitating more participants to share their personal stories on ART. The issue of acquaintance interviews; that is, the prior relationship between the researcher and the participants in qualitative research, namely interviewing, has been reflected upon by some authors (Garton & Copland, 2010; Roiha & Iikkanen, 2022). The salient feature is that this type of interview constitutes a fruitful arena where an existing common ground is used by the researcher to build rapport with the interviewees. The different levels of familiarity between the interlocutors—since any interview is a social interaction (Warren, 2012; Roiha & Iikkanen, 2002)—raise various issues. Despite its potential and benefits, acquaintance

326  Handbook of sensitive research in the social sciences interviews must be discussed and problematised based on empirical grounds, calling for greater attention to research ethics and the researcher’s positionality. Before each interview, participants received a clear explanation of the implications of taking part in the study. Interviews occurred at locations, dates, and times chosen by participants to ensure their comfort and security and protect their wellbeing in sharing personal stories and emotions. While semi-structured in format, interviews were predominantly guided by participants’ narratives, with the researcher adopting an active listener role rather than a directive interrogator. Emotional expressions from both participants and the researcher were openly acknowledged and became integral to the research relationship.

RESEARCHER’S POSITIONALITY: GENDER AND POWER DYNAMICS For qualitative researchers, another fundamental aspect of critical reflexivity involves reflecting upon and taking into account their own positionality when engaging with study participants. Positionality concerns the ways in which researchers make sense of their roles and the boundaries involved in the researcher–participant relationship, particularly in sensitive research. This entails developing an awareness of issues of power and inequality (Fenge et al., 2019). In this section, we explore the imperative need for researchers to recognise and address aspects such as gender dynamics and power differentials between the researcher and the individuals and communities they work with, as it significantly influences the research process and its outcomes. More broadly, it is of great significance to understand how various forms of privilege of researchers, such as academic authority or institutional affiliations, can influence the dynamics of vulnerability of study participants. By acknowledging these power imbalances, researchers can adopt more nuanced and equitable approaches to data collection and interpretation. Positionality includes aspects such as gender identity, cultural background, and social status, which shape the researcher’s worldview and influence their interactions with study participants (Harding, 1993; Liamputtong, 2010). The intersection of gender and power dynamics (West & Zimmerman, 1987) in the researcher-participant relationship is a central topic when discussing methodological issues in qualitative research. Researchers are encouraged to critically examine how their gender identity may influence the dynamics of power in interactions with participants and the data collection process. The gendered nature of power relationships may impact communication, trust, and the depth of information shared. Participants may respond differently based on the gender of the researcher, affecting the richness and authenticity of the data. Understanding and acknowledging these interactional dynamics that emerge during interviewing or ethnography and examining the performance and negotiation of gender in qualitative research methodologies (Arendell, 1997; Thomas, 2017) are essential for mitigating biases and ensuring the research captures a more nuanced perspective. Therefore, researchers are urged to engage in continuous self-reflection, considering how their own identities and positions shape the research process. Acknowledging one’s positionality enhances the researcher’s ability to interpret findings with sensitivity and depth (Finlay, 2002b). Acknowledging the researcher’s positionality is also a fundamental ethical consideration (Israel & Hay, 2006; Israel, 2014). Researchers must be transparent about their identity,

Researching with individuals/couples undergoing IVF treatments  327 potential biases, and the influence of power dynamics. Transparent communication fosters trust with study participants and ensures the ethical conduct of research, aligning with principles of integrity and respect. Recognising and embracing the researcher’s positionality contributes to the construction of knowledge that is more inclusive and reflective of diverse perspectives (Råheim et al., 2016). By acknowledging the influence of gender and power dynamics, researchers can enrich the depth and validity of their findings, offering a more comprehensive understanding of the studied phenomena.

JOINT INTERVIEWS WITH COUPLES: METHODOLOGICAL CHALLENGES Conducting joint interviews in social science research is a methodological approach that brings unique challenges and considerations to the forefront (Morris, 2001; Polak & Green, 2016). Drawing on insights from the literature and our empirical experience, we explore the methodological challenges associated with this approach, emphasising the complexities involved in capturing the dynamics, interactions, and shared experiences of couples. One of the methodological challenges relates to navigating power dynamics within couples during joint interviews (Zarhin, 2018) and encouraging equal participation from both partners. The inherent asymmetry in relationships may influence the willingness of each partner to express their perspectives openly. Interview dynamics may be influenced by one partner dominating the conversation, potentially overshadowing the voice of the other (Morris, 2001). Researchers must be attuned to these dynamics and employ strategies to ensure that both perspectives are heard and that the interview space remains equitable and balanced, in that each partner has an opportunity to share their views and express their feelings. Couples may present differing viewpoints or experiences during joint interviews, introducing the challenge of managing discrepancies in narratives. Therefore, the importance of creating a non-judgemental space in interviewing that allows for the exploration of divergent subjective perspectives (Gubrium & Holstein, 2001), recognising that these differences contribute to the complexity of the shared narrative. Moreover, joint interviews may be susceptible to social desirability bias, as individuals may tailor their responses based on the presence of their partner (Hudson et al., 2020; Zarhin, 2018). Acknowledging this challenge, some authors recommend employing techniques to minimise the impact of social desirability, such as a multi-level interview design that explores both individual and couple perspectives (Blake et al., 2021; Taylor & de Vocht, 2011). Additionally, couples often share deeply personal and emotional experiences during joint interviews. The challenge lies in managing and facilitating such disclosures in a supportive manner, emphasising confidentiality and assuring participants that honest and diverse perspectives are valued. Researchers should be prepared to handle emotional content responsibly, providing a space for expression while being mindful of the likely impact on participants (Riessman, 2008). This last aspect raises ethical considerations related to privacy, confidentiality, and the potential for unintended consequences on the couple’s relationship (Zarhin, 2018). Researchers need to carefully navigate these ethical challenges, ensuring that the research process of data collection does not harm the participants at any point—for instance, by producing frustration and anxiety—or compromise the integrity of their relationship.

328  Handbook of sensitive research in the social sciences Moreover, recent studies (Hudson et al., 2020) have argued for the benefits of conducting dyadic analysis in relational research on health and illness. This approach involves interviewing partners separately while considering the couple as the basic unit of study. The rationale behind this method is to enable the comparison of perspectives, capturing both shared and individual interpretations, experiences, understandings, and meanings (Taylor & de Vocht, 2011). In our study, the interviews with ART users were conducted either individually or in couples. As previously mentioned, most interviews were conducted with women; only in five cases were both partners present, and a single interview was with only the man. Some interviewees were recruited through online ART forums, where women predominate (Haagen et al., 2003; Weissman et al., 2000). Practical issues, such as conflicting schedules, often prevented interviews with both members of the couple. The interviews were conducted by a researcher experienced in dyadic or group interviews, who had beforehand considered and addressed specific challenges that may arise. To avoid bias in data collection, when conducting individual interviews, the apparent homogeneity of couple perspectives (‘we…’) was deconstructed by validating whether there was an agreement between both partners on the reported subject. This included directly asking the interviewee if, in their perspective, they believed the partner thought and felt the same way. During couple interviews, it was crucial to employ the same validation approach, drawing on the experiences of both partners and being attentive to non-verbal communication. This ensured an understanding of whether the reported experience by one partner was consistent with the other’s. Even when one participant dominated the conversation, the interviewer proactively created opportunities for both partners to express themselves. This approach aimed to prevent underreporting of the personal, subjective experiences of the less vocal partner or those who perceived their experiences as less interesting for the study. There is evident potential in having both partners present, capturing their interaction and enriching the overall narrative. Apart from their dialogue with the interviewer, the couple may also engage in conversations with each other. These discussions often lead to novel insights and different conclusions than what they had assumed individually, enhancing the relational account of the couple’s experience and highlighting gendered subjectivities. Qualitative research is inherently relational, and in this specific project, it appears that these relationships serve as a conduit for participants to contribute their narratives and personal experiences in a safe and meaningful manner. This partly explains why, just a few days after the initial call for participants, nearly 50 ART users promptly agreed to face-to-face interviews. In contrast, our online, anonymised survey, perceived as a safer participation option due to the absence of direct interaction for data collection, garnered fewer responses than expected for an online survey—specifically, 85 respondents. Over the first two weeks, just over 50 responses were received, and a month later, it struggled to reach 100 responses, ultimately falling short of that goal.

A SENSITIVE AND EMOTIONALLY-ENGAGED RESEARCHER Collecting data in qualitative health research requires building and maintaining a personal relationship, and boundaries between researcher and participants are often a matter of personal sensibility, difficult to foresee and establish in advance. To build rapport and gain trust,

Researching with individuals/couples undergoing IVF treatments  329 researchers need to mobilise emotional display (Sterie et al., 2023). Emphasising the relational dimensions of data production in this project appears to be pivotal in addressing sensitive topics, gaining access to the field, and creating suitable conditions for the participation of vulnerable subjects. This approach goes beyond the concept of a directiveness continuum in interviews and moves past the principle of axiological neutrality. Despite the effort to minimise researcher interference, as recommended, by allowing interviewees to construct a narrative about their biographical story and therapeutic path freely, the researcher’s involvement in the data collection process is nearly inevitable when dealing with vulnerable individuals and sensitive topics. In the present study, the interviewing process extended beyond merely listening and guiding the interviewee’s discourse; it involved the sincere expression of emotions and feelings from both the interviewee and the interviewer. This encompassed constant attentiveness and often included moments of tears and hugging. As Dickinson-Swift et al. (2009, p.61) state so well, ‘if emotionality does lie at the intersection of the person and society, then it follows that emotions are a central part of social research.’ Empathy, trust, openness, and the researcher’s ability to recognise and embrace their own vulnerability have thus become foundational aspects of involving vulnerable research participants in this sensitive research. Consequently, another crucial dimension is the researcher’s own feelings of vulnerability and personal distress when conducting studies focused on sensitive health-related topics among vulnerable groups. Vulnerability is not a static, predetermined, unidirectional process, but concerns both participants and researchers (Sterie et al., 2023). Still, the protection of vulnerable research participants has sparked much debate across all disciplines, but little attention is given to the impact of such research on the researchers themselves (Hamilton et al., 2006; Liamputtong, 2007). Perhaps in part, that can be explained by the fact that usually social scientists remain hidden from their readers and do not often confess the difficult experiences encountered during their research (Markowska-Manistra & Górak-Sosnowska, 2022). Despite researchers occupying an inherently dominant and powerful position when conducting research, even if they try to minimise it, they are also susceptible to vulnerability and may experience deep emotional and physiological phenomena (Bashir, 2019). Sensitive research can impact both participants and researchers, especially in qualitative studies given the required level of contact and openness between them (Liamputtong, 2007). Throughout the data collection and data analysis processes, researchers may experience emotional, psychological, and social strain (Nordentoft & Kappel, 2011; see Chapter 1). Conducting interviews may harm researchers’ emotional wellbeing, especially when listening to intimate and sad stories or becoming involved with participants. For instance, tearful interviews can prompt researchers to confront their own emotions, such as anger or powerlessness, and these emotional responses can be reactivated several times during the review and transcription of audio recordings and the analysis of field notes and subjects’ narratives (Dunn, 1991). When dealing with difficult and traumatic experiences during research with people perceived as vulnerable, the classical methodological principle of the researcher’s axiological neutrality and detachment from the object of study is put to the test. Assuming the role of the researcher will not prevent vulnerability and distress; in qualitative research, the opposite is more likely to happen. This is why we anticipated a considerable amount of what some authors have termed emotion work, and others emotional labour, in research (Dickson-Swift et al., 2009; Hanna, 2019; McGarrol, 2017, Sterie et al., 2023), departing from Hochschild’s seminal concepts (1983). The two concepts are often used

330  Handbook of sensitive research in the social sciences interchangeably in the literature (Dickson-Swift et al., 2009). Emotion work can be viewed as a form of emotional labour for the researcher, as it represents a necessary skill in establishing a successful rapport with research subjects in qualitative research (Bergman Blix & Wettergren, 2015; see also Chapters 1 & 3). Qualitative research work is not only an intellectual labour, but also an emotional one, since it comprises the effort an individual dedicates to articulating or managing their emotions to accomplish goals related to their professional responsibilities (Nutov & Hazzan, 2011; Liamputtong, 2020). Thus, emotion work theory provides a useful framework for understanding the experience and challenges faced by qualitative researchers when managing their emotions during the research process (Sterie et al., 2023). The literature widely acknowledges the negative consequences of emotion work and emotional labour, which qualitative researchers often engage in during fieldwork and beyond. Researchers working independently may encounter overwhelming emotions, underscoring the need for a support network to help them navigate the emotional strain associated with researching sensitive topics (Watts, 2008). Therefore, it is crucial that researchers increasingly engage in introspective discussions about how research experiences with sensitive topics can generate intense moral distress and emotional exhaustion (Sterie et al., 2023), establishing a space for researchers to explore the emotional nature of their work and to ensure adequate support at both individual and institutional levels (Dickson-Swift et al., 2009), such as training, mentoring and peer support (Shaw et al., 2020). This is even more important if we take into account that not all social researchers have the experience, support, and resources necessary to effectively engage in qualitative and sensitive research. Being a novice to research, working in small teams with insufficient support, and fast-paced projects are aspects that can increase the vulnerability experienced by researchers working on sensitive topics, influencing their emotional wellbeing (Velardo & Elliott, 2021; Sterie et al., 2023). Assisting researchers in their need for self-care, that is, in managing the challenges of sensitive and emotionally demanding research, is particularly important (Kumar & Cavallaro, 2018), given that the concept of emotion work is often undervalued in universities. Several reported strategies are employed by researchers to address their emotions throughout the research process and to create a necessary distance from the data. It is of utmost importance to negotiate the boundaries between the researcher and participants, striking a balance between the need for proximity and maintaining some distance (Watts, 2008; Garrels et al., 2022). Similarly, it is crucial to distinguish between a ‘private self’ and a ‘professional researcher’ to handle potential negative self-feelings (Bergman Blix & Wettergren, 2015, p.692). Researchers frequently remind themselves that the research is not about them, and in the absence of other institutional or professional support, some turn to friends, family, and colleagues for assistance and relief (Dickson-Swift et al., 2009). Nonetheless, emotional and intellectual detachment in settings of qualitative research involving vulnerable individuals and sensitive topics is hard to reach (Sterie et al., 2023). In addition to providing professional emotional support, it is recommended that researchers in certain areas receive training to cope with the emotional aspects of their work (Nutov & Hazzan, 2011). Qualitative researchers are often expected to manage emotions throughout the research process, both their own and those of others. However, entering the field and gaining and maintaining access require employing a set of emotional skills that are seldom analysed or trained (Bergman Blix & Wettergren, 2015). Our emphasis on emotional competencies aligns with previous work that highlights the need for a ‘sensitive researcher’ when delving into sensitive topics (Delaunay et al., 2020).

Researching with individuals/couples undergoing IVF treatments  331 Emotional competencies in research encompass self-awareness, self-regulation, empathy, motivation, and social skills, such as the ability to establish rapport with the interviewees and the capacity to incorporate emotional expressions—of both the researcher and the study participants—into the analysis. While maintaining professional boundaries, emotional engagement and empathy are valuable tools when engaging with potentially vulnerable populations. Researchers who demonstrate empathy, a capacity to understand and share the feelings of others, are more likely to establish rapport and trust with participants, that is, to connect on a human level. This emotional connection can enhance the quality of data by encouraging open and honest communication. Researchers who express genuine interest and understanding may foster a more open and authentic dialogue, allowing for a deeper exploration of sensitive topics. Therefore, sensitivity is integral to building and maintaining trust with vulnerable populations. A sensitive researcher can create a safe and non-judgemental space, allowing participants to share their experiences more freely (Flick, 2018). As already stated, trust is foundational to the researcher-participant relationship (Horowitz et al., 2002; Elmir et al., 2011; Fahie, 2014; Van Wijk, 2014), influencing the quality and depth of data collected. As previously discussed, embracing vulnerability and expressing emotions can have an impact on the researcher. However, researchers can also find something positive in their own emotions when it comes to data analysis; acknowledging their own emotions helps them to understand those of the participants in the study (Sterie et al., 2023). Researchers exploring sensitive topics must be attuned to the emotionally charged nature of the contexts in which vulnerable populations exist. Understanding the emotional landscape of participants enhances the researcher’s ability to interpret and contextualise data accurately, capturing the complexity of individuals’ experiences (Merriam & Tisdell, 2016). In the same way, understanding emotional labour is also essential for producing high-quality data analysis (Hoffmann, 2007). A participant-centric approach is advocated, emphasising the researcher’s commitment to understanding and responding to the unique needs and experiences of vulnerable populations (Smith et al., 2009). Researchers who adopt a participant-centric stance demonstrate a deep sensitivity to the individuality and diversity within these groups. Due to the diversity and unpredictability of social research, applying a ‘rulebook’ mentality concerning ethical regulations is insufficient when it comes to qualitative methods (Sterie et al., 2023, p.5). However, we must acknowledge some ethical considerations regarding the emotional engagement of the researcher. Ethical research conduct involves being transparent about this emotional engagement. Therefore, researchers should consider the potential impact of their emotional presence on participants and take steps to minimise any harm (Smith et al., 2009). A sensitive researcher understands the potential impact of their inquiries and approaches participants with empathy and respect. This approach contributes to a more positive and trusting researcher-participant relationship. Ethical guidelines often highlight the need for researchers to prioritise the emotional and psychological wellbeing of participants, according to the beneficence principle, and protect their rights (Israel & Hay, 2006; Israel, 2014; Ketefian, 2015). From our perspective, the success of studies exploring sensitive topics with potentially susceptible populations hinges on the role of a sensitive and emotionally engaged researcher, emphasising the nuanced and ethical nature of such engagements.

332  Handbook of sensitive research in the social sciences

CONCLUSION AND FUTURE DIRECTIONS Throughout this chapter, we have addressed the ethical, practical and methodological challenges of conducting multi-methods research on sensitive topics involving potentially vulnerable research participants. We did so within the framework of a specific project, drawing on our lived and embodied experiences in designing and executing research in an engaging, demanding and emotionally charged empirical field. Insights are derived from our experience in this project’s execution and management, but also in previous ones. We have proposed methodological reflections and practical suggestions from within the field and tried to critically address some a priori notions regarding notions of vulnerability, sensitivity, and the researcher-participant relationship. With this chapter, we aimed to provide an empirical foundation for advancing critical reflexivity on the concept of vulnerability in research. By drawing from these contributions, researchers can cultivate a more ethically robust and socially responsible approach to studying vulnerable populations, fostering a deeper understanding of the complexities inherent in the research process. The literature consistently highlights the need for sensitivity in qualitative research, especially when dealing with sensitive topics (Kvale & Brinkmann, 2009; Liamputtong, 2007, 2010, 2020). A sensitive researcher understands the potential impact of their inquiries and approaches participants with empathy and respect. This approach contributes to a more positive and trusting researcher-participant relationship. Ethical considerations, trauma-informed practices, establishing trust, informed consent processes, ensuring confidentiality, language choices, and post-interview debriefing are essential elements that researchers should integrate into their methodologies. By adhering to these principles, researchers contribute to ethical research practices that prioritise participant wellbeing (Paoletti et al., 2013) and enhance the credibility and reliability of research findings (Morse et al., 2002). We aimed to highlight the challenges of using survey questionnaires to study hard-toreach populations, particularly when aiming to acknowledge deeply personal and emotionally charged experiences. The limitations of closed-ended questions, the inadequacy in capturing nuanced emotions, and the potential for bias underscore the need for complementary qualitative approaches to provide a more comprehensive understanding of these complex narratives. Researchers should consider a mixed-methods approach to better navigate the intricacies of studying potentially vulnerable and hard-to-reach populations. The researcher–participant relationship is a dynamic and multifaceted aspect of the research process. Previous literature provides a wealth of insights into the initiation, establishment, and ongoing fostering of this relationship, emphasising ethical considerations, transparency, trust, and the continuous nature of the engagement. We attempted to underscore the critical need for researchers to reflect upon and take into account their positionality, particularly concerning gender and power dynamics. This reflection is foundational to ethical research practices, enhances the quality of data collection, and contributes to the construction of knowledge that is sensitive, inclusive and representative of diverse perspectives. Embracing the complexities of positionality ultimately strengthens the researcher–participant relationship and the integrity of the entire research process. It is well acknowledged by the literature that there are methodological challenges inherent in conducting joint interviews with couples. Recognising and addressing power dynamics, navigating discrepant perspectives, ensuring equal participation, addressing social desirability

Researching with individuals/couples undergoing IVF treatments  333 bias, managing emotional disclosure, and adhering to ethical considerations are critical aspects that researchers must navigate to conduct meaningful and insightful joint interviews with couples. A thorough understanding of these challenges contributes to the development of robust research methodologies that capture the complexity of couples’ experiences. Even participants considered potentially vulnerable can find a sense of accountability and empowerment through the recognition of being heard, contributing significantly to the scientific process, and making a meaningful impact. An integral aspect of sociological endeavours, especially qualitative research, is giving voice to those who often go unheard, making the invisible visible, and unraveling the seemingly incomprehensible (Liamputtong, 2020). Enabling individuals to engage in matters that affect them is a way to counter their potential vulnerability and is likely to alleviate emotional distress and suffering. As we emphasise the benefits of conducting sensitive research, despite challenges and risks, there are scholars, like Bergman Blix and Wettergren, who assert the positive outcomes of engaging in conscious emotional labour, being beneficial for both the researcher’s wellbeing and the quality of the research itself. Emotions serve as sources of information and tools of interaction. They stress the importance of researchers actively analysing their emotions concerning the field rather than simply reacting. We contend that researching sensitive topics necessitates a sensitive researcher attuned to their emotions, capable of emotional reflexivity, and skilled in building rapport with research participants. Such a researcher can display empathy and appropriate emotions during fieldwork and utilise insights gained from emotional analysis, benefiting both parties in the data analysis process. We aimed to emphasise the delicate and intricate balance necessary when studying sensitive topics with potentially vulnerable populations. The crucial role of a sensitive and emotionally engaged researcher in such studies is paramount and does not compromise rigour in research, that is, systematic data collection, rigourous analysis and transparent reporting. The researcher can navigate these complexities while upholding ethical standards and maintaining rigourous research conduct, which is essential for producing credible and reliable results. By integrating emotional competencies, such as empathy and sensitivity, along with ethical standards, methodological rigour and accountability, researchers contribute to the responsible exploration of sensitive topics. This approach fosters trust, ensures both participants’ and researcher’s wellbeing, and enhances the authenticity and depth of research findings.

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23. From field to self: (in)sensitivities encountered in researching sexual harassment in Sri Lankan workplaces Arosha S. Adikaram

INTRODUCTION While different definitions of sensitive research exist, it is commonly recognised to be research focused on topics deemed taboo, distressing, or potentially harmful to the participants and/or researchers involved (Dickson-Swift et al., 2008; Lee & Lee, 2012; Liamputtong, 2007; see Chapter 1 in this volume). These topics may involve controversy and evoke strong emotions (McGowan, 2020) and may necessitate the disclosure of private, personal, or intimate experiences, behaviours or attitudes, potentially leading to emotional arousal, social censure, or disapproval (Liamputtong, 2007, Wellings et al., 2000). Scholars have extensively explored the topic and the process of conducting sensitive research, as well as the particular challenges and difficulties such research poses for researchers. There are individual reflective accounts (Adikaram, 2018a; Pandey, 2023), group reflective accounts (Adikaram et al., 2022; Tilley et al., 2022; Shaw et al., 2020), autoethnographies (Dempsey et al., 2016; Pillay, 2023), literature reviews (Lee & Lee, 2012), round table discussions (Mallon & Elliott, 2021), as well as empirical research (Dickson-Swift et al., 2008) on sensitive research, where areas such as practical and ethical considerations of undertaking sensitive research (Eneman, 2022; Lee & Lee, 2012; McGowan, 2020), methodological challenges (Komaromy, 2020), potential points of vulnerabilities and strategies for handling challenges (Adikaram, 2018a; Adikaram et al., 2022; Powell et al., 2018; Shaw et al., 2020) are explored. In that, emotional distress and trauma for the participants, as well as the physical and emotional risk for the researchers when dealing with vulnerable groups and/or sensitive topics, are extensively discussed (Manders & Galvani, 2014; Sikic Micanovic, Stelko & Sakic, 2020; Pearlman, 2023; Williamson, 2020; see also Chapters 1 & 3). Nevertheless, prior research repeatedly highlights the little focus given to the researcher and the issues they face vis-à-vis those of research participants in sensitive research (Pearlman, 2023; Sherry, 2013; Thorneycroft, 2020). Even more rarely are the sensitivities (heightened awareness) and insensitivities of the researchers who are involved in such research explored (see Mallon & Elliott, 2021 for an exception). As researchers highlight, ‘[t]he sensitive topics that social researchers study are increasingly intertwined with their own sensitive experiences in the research process’ (Markowska-Manista & Górak-Sosnowska, 2022, p.9). The (in)sensitivities that arise in conducting qualitative sensitive research, the tensions that exist for researchers undertaking this type of research, and how those tensions can be managed are rarely discussed, especially when the researcher is involved with the topic for a long time. Indeed, not everyone is aware of the burden resulting from such long-term work with a sensitive topic (Markowska-Manista & Górak-Sosnowska, 2022). Also, many studies of 339

340  Handbook of sensitive research in the social sciences researchers’ experiences, emotional trauma, and sensitivities are about early-career researchers (Sherry, 2013) and rarely about mid-career researchers with years of experience in conducting sensitive research. Further, there is a nascent conversation on the researchers’ overall experiences in conducting sensitive research (Mallon & Elliott, 2021). Most studies explore the researcher’s experiences during the research process and in the field (see Adikaram et al., 2022; Pillay, 2023) and seldom explore the experiences of the researchers after the research work is over (see Thorneycroft, 2020 for an exception), overlooking the experiences postresearch and how researching a sensitive topic will shape a researcher’s professional and personal experiences (see Emerald & Carpenter, 2015 for an exception). These gaps related to sensitive research make the issue incomplete, leaving a void in truly understanding the impact of sensitive research on the researchers. Hence, this chapter aims to engage in a self-reflective and critically reflective account of my journey in engaging in sensitive research for close to two decades as a mid-career researcher/academic. I specifically reflect upon the areas that I was/am ‘sensitive’ and ‘insensitive’ about in doing sensitive research and the associated challenges thereof, especially outside of the research realm. To this end, I enquire about what I, and others, might be taking for granted—assumptions, both explicit and implicit—questioning what is expressed and left unspoken (Cunliffe, 2016). I scrutinise the potential impact my research might have on both myself and the manner in which I conduct sensitive research. As such, I look back at my engagement and personal experiences in carrying out qualitative research on the harassment and sexual harassment of women and gay employees at workplaces and reflect on the following specific questions: 1. What felt sensitive to me and what did not in the field while conducting sensitive research and beyond? 2. How has conducting sensitive research affected me and my career? What are the (in)sensitivities that have arisen related to my career due to my engagement in sensitive research? 3. Why did these feel (in)sensitive? 4. How did I deal with these (in)sensitivities? Reflexivity is about personal and internal consciousness and operates on dual fronts, involving self-reflection on our personal beliefs, values, and interpersonal dynamics (Cunliffe, 2014), as well as critical reflection on organisational practices, policies, social structures, and knowledge foundations (Cunliffe, 2016). A researcher engaged in critical reflexivity examines the foundational assumptions that support knowledge claims and scrutinises their impact on research design, methodological approaches, theory development, and the presentation of research findings (Cunliffe, 2011). A self-reflexive researcher engages in an internal conversation, examining their thinking, beliefs, values, experiences, behaviours, and the nature of their relationship with research participants. As such, being engaged in self-reflection and critical reflection, I was able to examine my thinking, beliefs, values, experiences, and behaviours beyond the field and revisit the contradictions and discomforts I experienced in my personal and professional life as a woman, researcher, activist, and an academic, being engaged in sensitive research for many years. In effect, I engage in a deeper debate around my taken-forgranted assumptions and understandings about doing sensitive research. This chapter will contribute to the growing body of knowledge about the complexities inherent in carrying out sensitive research and how researchers need to juggle research with their professional and personal identities/images. This knowledge is especially useful in today’s

From field to self: (in)sensitivities encountered in researching sexual harassment  341 societies, where there is an abundance of sensitive or controversial topics that need exploration (Hilário & Augusto, 2020). Therefore, I aim for my reflections to illuminate the sensitivities, potential conflicts, and issues that may arise during the course of researching these many sensitive topics. This awareness can assist researchers in planning their research and their professional careers accordingly. Furthermore, these reflections can also inform supervisors and colleagues about the sensitivities and challenges their research students or colleagues encounter, prompting them to think of ways to help, such as providing opportunities for emotional release and support (Sherry, 2013). As research indicates, supervisors and other stakeholders in research might not always understand and provide such support to their research students (Waters et al., 2020). This support is particularly important for novice researchers engaged in sensitive research.

TRACING TWO DECADES OF DOING SENSITIVE RESEARCH ON WORKPLACE SEXUAL HARASSMENT I have actively undertaken qualitative research on sexual harassment and workplace harassment as a heterosexual married female for close to two decades. My involvement in research in this domain commenced almost simultaneously with my entry into academia at a national university, resulting in a closely intertwined progression of my research and professional journey. My entry into doing sensitive research was my master’s thesis, where I focused on the nature of sexual harassment women face in workplaces, within an interpretive paradigm. Subsequently, I extended this exploration into my PhD research and continued to delve into various facets within this broader topic over the years. Commencing with the examination of the experiences of Sri Lankan women facing sexual harassment, exploring their coping mechanisms, meaning-making processes, and sense-making (Adikaram, 2018c), I expanded my investigations to include diverse participants, such as divorced women (Adikaram, 2018b) and gay employees—a study that I supervised (Adikaram & Liyanage, 2021). Through my participation in research within this domain, I have additionally assumed an activist role, collaborating closely with private sector business organisations, government agencies, and educational institutions to effect positive change. Although my personal experiences did not initially drive me to research sexual harassment in the workplace, as I delved into the subject, I realised I also had encountered such experiences, sparking my increased interest and involvement—both professionally and personally. Nevertheless, I have consistently recognised that my status as a woman with personal experiences of sexual harassment does not automatically confer expertise on the experiences, reactions, perceptions, or emotions of my study participants. Consequently, I have been diligent in maintaining reflective practices throughout the research process, considering how my positionality, experiences, thoughts, and emotions may influence the research process. These reflective practices have extended beyond the field, culminating in the writing of this chapter. I regard my research on sexual harassment as sensitive due to its taboo and controversial nature in the Sri Lankan context. On the one hand, discussing sex and sexuality is generally considered improper in Sri Lankan culture—a highly patriarchal country, making sexual harassment a taboo topic. On the other hand, it is distressing and potentially harmful to participants, involving the disclosure of private, personal, or intimate experiences, behaviours or attitudes (Dickson-Swift et al., 2008; Lee & Lee, 2012; Liamputtong, 2007; Wellings et al.,

342  Handbook of sensitive research in the social sciences 2000). Additionally, addressing sexual harassment among gay employees introduces another taboo element, as homosexuality is a criminal offence in the country (Adikaram & Liyanage, 2021). Moreover, researching harassment among divorced women also proved to be sensitive, as divorce is a culturally stigmatised practice, and divorced women are marginalised and stigmatised due to the high value that is placed on marriage for women in Sri Lanka (Adikaram, 2018b). As taboos can hinder specific cultural or social groups from openly discussing or acknowledging subjects within their purview (Markowska-Manista & Górak-Sosnowska, 2022), my research has encountered specific challenges and triggered numerous sensitivities over the years—some experienced during my engagement in research and others arising from my involvement in this area. In what follows, I explore these sensitivities and challenges in more detail.

DO I MAKE SUFFICIENT IMPACT? I have been very sensitive to my responsibility towards making a meaningful impact through my research—a positive change related to sexual harassment at workplaces. While there are researchers of sensitive research (see Pillay, 2023) who have reported how they have translated their research work for positive change, this is not always the case for many researchers. Mallon and Elliott (2021) have explored how a researcher’s role can be passive and lack the power to influence or change, which can lead to guilt, tension, and frustration for researchers of sensitive topics. In some instances, this passive role of researchers is also described as ‘selfish’ because it—in a way—exploits the traumatic stories of participants for personal gains (such as a PhD qualification, research publication, or career enhancement). Mallon and Elliott (2021) further highlight how some of their round table discussions with researchers of sensitive research felt especially sensitive due to their inability to implement change and measures in the form of changes in practice or opinion/attitudes. I too am sensitive to the possibility that my research may not be making a substantial impact, change, or proving sufficient. When I observe limited citations or readership of my research on the topic, I specifically question the significance of my contributions and the significance of my work. I am also aware of the fact that these publications do not reach the audience they should reach, such as practitioners, human resource professionals, managers, employers, or policymakers. Indeed, there are many other ways that one can make a meaningful impact in the area of sexual harassment, such as creating awareness, influencing policies, shaping training programmes, empowering victims, guiding interventions, promoting accountability, encouraging organisational change, educating stakeholders, and advocating for a cultural shift. While I may not have engaged in all these activities, in my pursuit of making a meaningful impact beyond my PhD research and journal publications, I have proactively sought opportunities in multiple areas as an activist. I have voluntarily conducted numerous awareness creation sessions for individuals, business organisations in both the public and private sectors, and the public, fostering a collective understanding of the issue. In these sessions, I have specifically attempted to create awareness about the nature and extent of sexual harassment, its negative consequences, myths and misperceptions surrounding the issue, and what individuals and companies can do to address it, informed by my research. Additionally, I have influenced policies and guided interventions by assisting numerous organisations in developing comprehensive measures to combat and address sexual harassment. I have also created and

From field to self: (in)sensitivities encountered in researching sexual harassment  343 distributed guidelines and sample anti-sexual harassment policies and procedures for companies to adopt. Furthermore, I have partnered with government organisations and ministries and other interested communities to assist in bringing about positive change. Recognising the limited readership and reach of my journal articles, I have also authored and published books and articles locally in the area, with the hope of reaching those who can make a difference, such as managers, employers, human resource professionals, and policymakers. Moreover, I ensure that I educate my students—future professionals in human resource management—on the issue by incorporating it into my courses on industrial relations and contemporary issues in human resource management. Any contribution I make in creating a positive change related to sexual harassment in workplaces is voluntary and free of charge, as I do not seek to gain anything further from it. I consciously strive to be ‘selfless,’ utilising my research (along with participants’ stories) for altruistic purposes, positive change and as a way to reciprocate. Yet, I wonder whether my efforts are adequate. Thus, at times, I experience a sense of guilt, contemplating whether my participants had to revisit their traumatic experiences without achieving sufficiently meaningful outcomes. I am also sensitive to the fact that while at a macro level I make some contributions, I have not been able to provide individual assistance to the participants of my research and victims of sexual harassment who needed help in many instances. Whether researchers should provide such assistance is debatable. However, researchers document how they have felt the need to reassure, comfort, and share information that may be helpful to the participants during their research, or how they have actually provided assistance (Sherry, 2013). In fact, there were numerous times that I felt helpless and hopeless as a researcher and felt frustrated at not being able to do more to change the situations faced by those I was interviewing. While, as far as I know, I did not come across instances where the participants became overtly distressed during or after the research process, there were many instances during the interviews when I felt that I needed to give them advice specifically on coping and responding to their experiences of sexual harassment. There were also a couple of instances when the participants approached me after the research (years after the study, in some instances) seeking my help in stopping the sexual harassment they were facing. There were also a number of instances where the participants had given my contact details to other victims of sexual harassment, assuring them that I would help them. In fact, prior researchers have documented how they have provided help to their participants in numerous ways. For example, Halek et al. (2005) record how they provided rapid assistance to two of the participants of their study who were suicidal and had not known where to seek help. While I should have had resources and referral pathways in place to assist participants and others who might be facing sexual harassment, it was less simple, as the legal system or support system related to sexual harassment is not very effective in Sri Lanka. While the Penal Code of the country makes sexual harassment a criminal offence (section 345 Penal Code (Amendment) 1995), rarely have cases of sexual harassment in workplaces been prosecuted under the Penal Code. Furthermore, the law does not mandate organisations to follow any procedure for handling sexual harassment, unlike the law in countries such as India. As such, many organisations do not have mechanisms to handle sexual harassment. Consequently, if companies do not have any procedure to handle sexual harassment and if companies are ignorant of the importance of handling sexual harassment, the victim will have no other recourse than to make a complaint to the police and take action under the Penal Code. However, this process itself is not effective as there are numerous delays and other inefficiencies that

344  Handbook of sensitive research in the social sciences discourage victims from seeking relief from the police. Whether justice will be served in such instances is highly debatable. As such, asking a victim to go to the police is not entirely satisfactory, although I can certainly show them that option. Hence, unless companies have a process and/or understand the importance of solving sexual harassment, I have no other means to assist them or refer them for help. However, there are a few government and nongovernmental organisations that offer counselling and legal help. In many instances, I was able to refer the victims/those who sought my help to a few of the organisations that I thought would help. However, when I later inquired, I found out that some of these organisations have not been entirely helpful for the victims. This makes me helpless, hopeless, and frustrated. I particularly remember one victim, Ramani (pseudonym), who was referred to me by a research participant who thought I would be able to help. Ramani had been sexually harassed by her boss, the head of a local branch of a multinational company, from the day she went for the interview at the company. She narrated harrowing stories of how she was frequently subjected to unwanted physical acts such as groping, kissing, and touching, as well as threats and promises in exchange for sexual favours and other verbal sexual harassment. Her complaints to the head office about sexual harassment had not been successful and had come back to the boss, who then started being openly abusive, shouting at her in front of others and belittling her in meetings. She particularly feared losing her job and the only income she had, as well as her boyfriend, who had become tired of her stories of harassment. I could see she was on the verge of a mental health crisis, and from the things she said, I even feared suicide. Although I did not have much faith, I showed her the different avenues available for her to seek relief and referred her to a few places where she could get employment-related advice and counselling. I met her once and she called me a few times. Yet, I did not actively follow up to see whether she received the help she badly needed, knowing there was a high chance she might not get effective help. This incident happened about ten to twelve years ago, and I still cannot get rid of my guilt for not following up and helping her more actively. This still haunts me and makes me question my role as an activist in the area. I especially felt helpless and inadequate when I could not assist a few academics from my own workplace with their experiences of sexual harassment, even though I had some authority to assist them and there were established policies and procedures in place. I realised I could only get involved to a certain extent, based on the policies and procedures in the workplace and the authority level I had. I was quite confused about where my boundaries were as an activist and a researcher in the area, and as an employee who had some power to help the victims. Subconsciously, I was also worried about my professional safety. I realised that I might not have the same freedom to ‘act’ within my own workplace as I might in my advocacy role outside (Tilley et al., 2022). Consequently, I could not really ensure justice for them. I wondered whether I really did my best to ensure justice. What more could I have done? I became very sensitive to how I might be seen by these victims who knew of my involvement and activism in the area, and I feared being seen as a fraud. Furthermore, when tasked with conducting sessions on harassment and sexual harassment affecting LGBT employees, I am acutely aware of and sensitive to the potential limitations in my ability to do justice to the topic as an outsider. Although, as an outsider (to the topic)/ insider (to the culture), I might have brought out the positives of being an outsider in my research on sexual harassment of gay employees (Adikaram & Liyanage, 2021; Adikaram et al., 2022), I recognise that an insider to the topic may excel in the role of awareness creator/speaker (vis-à-vis the researcher) in the area. Engaging in such speeches and awareness

From field to self: (in)sensitivities encountered in researching sexual harassment  345 sessions, I sometimes experience a sense of being an imposter. While my commitment to making a positive impact in my research domain remains steadfast, and I am unwilling to forgo opportunities to contribute, I recognise the possibility that there may be individuals better qualified than myself to lead these particular sessions.

AM I SEEN AS A DISRESPECTFUL WOMAN? As Brewis (2005, p.496) states, ‘[o]rganizational research on sex is particularly likely to be subject to signings by others,’ where the researcher’s identity can be constructed as sexualised. Brewis (2005) further contends that researchers exploring sex and sexuality might be perceived as fascinated by sex and seeking sexual attention. Particularly in a cultural context where the discussion of topics such as sex and sexuality is suppressed for women and open discourse of a sexual nature is deemed inappropriate for women considered ’proper,’ ‘respectable,’ or ‘good’ (Obeysekera, 1984; de Alwis, 1997; Perera, 1997), I was sensitive to how I am designated and seen by others for researching and openly discussing this taboo topic. Do they see me as sexualised, seeking sexual attention (Brewis, 2005) and lacking respectability for engaging in such research? I recall an incident when a male work colleague of mine was sexually harassed at work. He had received some messages and emails containing sexually vulgar comments and poems from another colleague. Justifiably, I was particularly interested in the incident, and I got the opportunity to discuss this incident with the victim. He explained the incidents and said, ‘I cannot show what the harasser sent me to [the name of another female work colleague who is also your best friend] because it is so vulgar, but I will show it to you,’ and he showed me the comments. While I thanked him for trusting me with the information, in my mind, I was thinking, ‘Does he not see me as respectable? Is that why he can show these to me but not to my friend, whom he considers more respectable?’ I have seen surprise on many faces when I talk about sexual harassment openly, as it is not common for a female to discuss these subjects so freely and naturally. Consequently, I am automatically considered controversial, too forward and bold. This is an image that is contrary to how a woman in our society is expected to be—subordinate, modest, and non-controversial. These sensitivities about how I am seen by others have led me to be very careful about how I portray myself. Hence, I engage in impression management (Roberts, 2005), especially when attending events and training related to the issue. In these instances, I dress in the traditional Sri Lankan attire for women (saree) as that depicts respectability, and I portray a very serious outlook. I also select case studies and examples for my sessions that are not overly sexual and make sure that I do not use certain terminologies that can be considered overly sexualised. In fact, being socialised into these gender role expectations of what we should say and should not as respectable women, I am not comfortable at all saying certain words related to sexual harassment incidents in an open forum. While over the years I have overcome my sensitivities about these issues to a greater extent, traces of them still remain, limiting me in certain ways.

AM I INSENSITIVE TO PARTICIPANTS’ STORIES? The question of whether a researcher should adopt emotional stoicism, deliberate detachment, or emotional expressiveness during interviews remains a subject of debate. Previous studies

346  Handbook of sensitive research in the social sciences underscore the importance of researchers being cognisant of their emotions (reflexivity) and minimising any emotional impact (subjectivity) on the research process. Indeed, being emotionally connected to one’s research or experiencing excessive emotions may be perceived as compromising the objectivity and distance expected in ‘proper research’ (Mallon & Elliott, 2021). However, maintaining emotional distance can be challenging (Sherry, 2013), especially in qualitative research on sensitive topics and when the researcher has a personal connection to the subject. Simultaneously, it is recognised and anticipated that, when conducting interviews on distressing and emotionally charged issues, researchers should be active and empathetic, employing various approaches (McGowan, 2020). Particularly in social constructionist studies, embracing the researcher’s subjectivity as an embodied, emotional individual contributing to a more equitable qualitative research relationship is encouraged (Komaromy, 2020). As a qualitative researcher in the interpretive paradigm, I am considered a subjective and emotional researcher who can incorporate personal experiences and emotions into my studies. However, I have observed a growing desensitisation on my part towards the issue and the victims or participants, especially after repeatedly hearing accounts of sexual harassment faced by women and gay employees in workplaces over the years. The empathy and sympathy I initially felt for participants when I began my research two decades ago have ebbed and waned. I distinctly remember experiencing mental and emotional fatigue, a blend of dismay, anger, and sadness, as I encountered distressing stories during interviews in the initial years of my research. My emotional response at that time was more genuine, as I could closely empathise with the participants, drawing from my own experiences as a woman who had encountered similar situations. Sherry (2013) also reports how she was becoming immune to the stories of individual suffering in her study of street soccer participants who were experiencing homelessness, drug and alcohol addiction, and mental illness. Hence, while this appears to be a rather common response or a coping mechanism for emotional exhaustion that researchers might encounter in conducting sensitive research, I was still troubled by it. I now contemplate whether I have somewhat mastered the art of managing my emotions and engaging in emotional labour (Hochschild, 1983; Waters et al., 2020). This involves handling and expressing emotions strategically during interviews to achieve specific goals, such as building rapport, ensuring participant comfort, and encouraging in-depth sharing of experiences, perceptions, and ideas. Consequently, I’ve noticed an increase in my use of surface acting during recent interviews, expressing emotions like anger, sympathy, and empathy that I may not genuinely feel. While the performance of emotional labour in research is accepted and expected (Komaromy, 2020; Waters et al., 2020), I question whether I have become desensitised to these stories, have grown emotionally hardened, or become distanced. More importantly, am I deceiving my participants? Insensitivity implies a lack of empathy or a disregard for the emotional impact of participants’ experiences. In contrast, emotional distance refers to maintaining a level of detachment to manage one’s emotions and objectivity during the research process. However, complete emotional detachment can hinder a researcher’s ability to understand participants’ experiences and the nuances of the phenomena being studied. The ongoing debate on whether to be emotional or maintain emotional distance during sensitive research persists (Emerald & Carpenter, 2015). Nevertheless, I believe that, while emotional distance can serve as a necessary coping mechanism for researchers dealing with emotionally charged topics, it is crucial for me to identify, acknowledge, and manage my (in)sensitivity and emotional responses in

From field to self: (in)sensitivities encountered in researching sexual harassment  347 a manner that allows for empathy and understanding without compromising the integrity of the research. While the extent, nature, and quantity of emotional effort exerted by a researcher are inevitably influenced by individual values, identity, the research participant, the research topic, and the overall research context (Waters, 2020), I want to ensure that my emotions are genuine. Specifically, I need to verify that I am honest with my participants, those who share their stories with me, and with the topic itself, ensuring that my concern for the issue and my personal values and perceptions regarding the matter remain intact. If what I am feeling is insensitivity rather than emotional distance per se, perhaps it is time for me to revisit my beliefs and commitment to the topic.

AM I SEEN AS LESS ACADEMICALLY WORTHY? I have also been quite sensitive to how my colleagues and professionals perceive me due to my research area and its potential influence on my academic trajectory. It is important for me to meet the expectations associated with being a competent professional, particularly as a professor in human resource management. Consequently, I am sensitive to the potential mismatch between my desired professional image/identity and my perceived professional image/identity (how others currently view me) (Roberts, 2005), specifically stemming from my research on sexual harassment. Academic identity is typically associated with teaching and research activities grounded in specific subjects or disciplines (Deem, 2006). In that, research is increasingly recognised as a pivotal aspect of academic life, often taking precedence over teaching and closely linked to an academic’s competence and value (Mula et al., 2022). Thus, I cannot avoid the strong connection between my research and my professional identity. In this regard, I feel that engaging in research on sexual harassment has led to the undermining of my research and its perception as less worthy, impacting my overall professional image. Lee (1993) discusses how researchers dealing with sensitive topics may face ‘occupational stigma,’ where their work is treated as trivial or dismissed as a joke. I have encountered instances reflecting this stigma, where some academics and colleagues failed to grasp the connection between sexual harassment and human resource management—my area of specialisation. For many, it was perceived as a trivial and insignificant topic within the realm of human resource management. Others even treat sexual harassment as a matter for laughter, questioning the need for extensive study on the subject. I particularly felt sensitive about how others see my worth as an academic during a crucial promotion interview I faced. As part of the evaluation process, I had to present my research, and the assessment covered my research abilities, publications, and contributions to my profession and discipline, among other criteria. Despite presenting a portfolio that included significant research work on sexual harassment along with topics like remote work, human resource management during crises, and employee voice, the questions I faced focused solely on my research related to sexual harassment. It became evident that my contributions in other areas were being overlooked. I was advised to delve into what some interviewers deemed more ‘important’ areas of human resource management, implying a perception that sexual harassment was not a significant issue for women in workplaces nor an important human resource management issue. Such instances, where the importance of my research was undermined,

348  Handbook of sensitive research in the social sciences were accompanied by references to cases where women were accused of instigating sexual harassment or making false complaints for personal gain. This, I felt, was undermining the importance of the issue and my contribution therein. Furthermore, I am increasingly sensitive to the fact that I am not being considered for many other research projects in human resource management that I might be interested in within academia. I feel that I am being pigeonholed into gender issues in organisations. While I am eager to be part of research teams or even supervise other topics in human resource management, those opportunities are rare because I am consistently labelled as a researcher in gender or sexual harassment. When there is a sensitive topic related to women or LGBT individuals, I am typically one of the first individuals the faculty approaches for supervision or reviewing/ examination. The assumption is that I would be interested in all topics, especially sensitive or taboo ones, related to women, LGBT individuals, or sex and sexuality. Recently, I was asked to supervise an applied research project on an exploration of enablers and challenges in the production of low-cost biodegradable sanitary napkins. This is well beyond my specialisation in human resource management and gender in organisations, and delves more into business and entrepreneurship. The decision to appoint me as a supervisor for this project was made simply because menstruation and sanitary napkins are taboo topics in Sri Lanka (Amarasinghe & Borgwaldt, 2023) and are related to women. To the best of my knowledge, this topic is not openly discussed in management faculties’ research arenas, although companies are increasingly recognising menstruation and its effects on female employees in their HR policies and procedures. However, the moment this particular topic came up for allocation, the relevant authorities automatically thought of me ‘as I am the one who does “this type of studiy.”’ I also recall an incident when a group of my junior colleagues informed me that they avoid the lunchroom during lunchtime because a group of senior colleagues engages in discussions and comments of a sexual nature that make them uncomfortable. Consequently, they prefer to have their meals inside their office rooms. Recognising the inconvenience faced by my junior colleagues, I considered it my duty to inform the senior colleagues, with whom I have a friendly rapport, about this situation and request that they refrain from such discussions in the lunchroom. Given my research in the area, I felt a responsibility to address the issue. However, when I informed the group of senior colleagues that their actions were making a few others uncomfortable, they became defensive and outright denied engaging in such talk. It was evident that they perceived my concern as making a ‘big deal’ out of something insignificant, either because I am overly sensitive to this area or because that is what I do (make a big deal out of a small deal—sexual harassment in the workplace). Therefore, while my commitment to sexual harassment research remains unwavering, I do not want my professional image to be solely linked to that, as it can confine me and limit my exposure to other areas of interest in the discipline. I aspire to be recognised as a competent professional and researcher in various areas of my research interests, such as employee voice, HR during times of crisis, and research methodology. Upon reflection, I realised that I am once again engaged in emotional labour (Hochschild, 1983) when dealing with colleagues whom I suspect may belittle my work or take it for granted. I show a tough exterior and a ‘don’t care’ attitude when, in reality, I worry about how they interpret my engagement with this kind of research, or I conceal my hurt when they belittle my research area. However, on rare occasions, I also voice my displeasure, expressing my true feelings and emotions.

From field to self: (in)sensitivities encountered in researching sexual harassment  349

AM I STILL JUDGMENTAL AND BIASED, AFTER ALL THESE YEARS? While I have taken pride in maintaining a non-judgemental and unbiased approach in my research, particularly when listening to participants’ stories of sexual harassment, I have come to the realisation that, even after decades of research and activism in the field, I still grapple with maintaining an unbiased stance and a critical distance. It has become apparent that I have not been able to completely overcome the influence of decades of gender role socialisation. A specific incident brings this realisation to light. One of my participants shared her experience of being sexually harassed in a hotel room when her boss invited her for a meeting. Despite her discomfort with her boss’s behaviour leading up to the incident, she went to the hotel room as directed by the receptionist. The events that unfolded in the room involved unwanted discussions of a sexual nature and the boss exposing himself to her. While narrating her story, I found myself questioning why she initially went to the room, considering it an unlikely place for a business meeting, especially given her boss’s previous behaviour. I also wondered why she did not leave at the first sign of danger when the boss started discussing sexual matters. Despite these thoughts, I failed to probe deeper into these areas during the interview—understanding how she made sense of the situation, what led her to the hotel room and why she endured the unwanted behaviour for an extended period. The participant herself mentioned that her husband and others had raised similar questions when she shared her story. In my reflections, I sensed a judgement that she may have brought the situation upon herself by entering the room, and I overlooked considering the circumstances that led to this. I failed to empathise with her perspective and understand the potential power differential or fear of job loss that may have influenced her behaviour. This internal judgement contradicted my advocacy for not judging the victim, making me feel like a hypocrite. This incident has served as a crucial self-reflection point, prompting me to acknowledge the lingering biases and challenges I face in maintaining an unbiased perspective despite my intentions and previous experience in the field. It highlights the ongoing need for researchers to continuously examine their own biases and preconceptions to ensure a more empathetic and objective approach to sensitive research topics.

CONCLUSION AND FUTURE DIRECTIONS Sensitivities related to sensitive research do not end with the completion of the research project. They can affect the researcher’s personal and professional life in many ways and prove an irrefutable influence on them for many years. This debrief and reflective exercise allowed me to be candid and honest about my experiences, thoughts, and emotions over the years. It intertwined my past and present experiences and memories of engaging in sensitive research to reveal numerous (in)sensitivities that I harbour due to my involvement in such research, irrespective of my long years of experience in conducting sensitive research. I am sensitive to the impact of my research, questioning whether it contributes sufficiently to positive change without selfishly benefiting me. I am particularly sensitive to my inability and helplessness in assisting victims and participants in need. Additionally, I am sensitive about how my research influences my professional image and identity as an academic and researcher, considering

350  Handbook of sensitive research in the social sciences how others perceive the academic value of my work. I am worried whether my research area is bringing in limitations in my profession and my research. Furthermore, I am attuned to the way others perceive me as a woman due to my association with a taboo topic. Am I seen as a disrespectful woman? Equally, I am sensitive to the possibility of being insensitive towards my participants and the lingering biases and judgements I may still hold despite years of research engagement. Consequently, with these sensitivities, I am introspective about my identities as a woman, a researcher, an activist and an academic. Overall, my experiences and reflections indicate that the sensitivities and associated challenges of conducting sensitive research have intertwined with my personal and professional life, extending beyond the research process. Although the endpoint of the research process is neither smooth nor absolute (Thorneycroft, 2020), it certainly does not conclude with a PhD or a publication. While some of my reflections and sensitivities may be perceived as imaginary rather than factual, the fact that I am sensitive to them emphasises the need to recognise and reflect on these sensitivities, understanding how they influence or shape my personal, professional, and research life both presently and in the future. The experiences and incidents giving rise to these sensitivities, as well as the sensitivities themselves, are subject to change, reconceptualisation and reinterpretation over time. In effect, I may not view these incidents and experiences in the same way in the future as I do now, but in this particular time and context, they hold significance for me. I echo the sentiments of Thorneycroft (2020) in emphasising that researchers must carefully consider the what, why, and consequences of their research, accounting for its impact on themselves, the research subjects (participants), and society at large. The essence of conducting this type of research is rooted in a desire to make the world a better place and combat injustices, whether on a small or large scale. Our goal is to give voice to a marginalised or vulnerable group, empower them, and ensure social justice. Recognising that the immediate achievement of greater objectives may take time, researchers should persevere in their quest for change, moving beyond contributions to knowledge in the field. In conclusion, despite the numerous sensitivities and challenges encountered during the research process and beyond, and occasional self-doubt, my research journey has been rewarding and beneficial. While I might reconsider some theoretical and methodological decisions made over the years, I would not exchange my experiences in researching sexual harassment in the workplace for anything. After all, sexual harassment in the workplace continues to be a critical issue (Au, Dong, & Tremblay, 2023; Hardt, 2023; Heymann et al., 2023), affecting the lives of employees, their families, and society at large. This indicates the need for more action, strategies, and efforts to combat the issue. As research plays an important role in understanding the problem and devising such actions, strategies, and efforts, it is imperative that more research be conducted in this area. Hence, my reflections and deliberations here can help researchers embarking on research in this area to be aware of the drawbacks they might face and build self-resilience to navigate these challenges in both professional and personal settings. Furthermore, my deliberations can assist future researchers in being more impactful and responsive to the needs of victims, encouraging them to explore alternative ways to contribute to change. Researchers can use their findings as a springboard for positive action, contributing to the creation of a more inclusive and equitable environment in academia and society.

From field to self: (in)sensitivities encountered in researching sexual harassment  351 Most importantly, for researchers involved in sensitive research, it is essential to continue reflecting on their own experiences and to seek support from mentors, colleagues, or mental health professionals if needed.

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352  Handbook of sensitive research in the social sciences Hilário, A. P. & Augusto, F. R. (eds). (2020). Practical and ethical dilemmas in researching sensitive topics with populations considered vulnerable. MDPI. Hochschild, A. R. (1983). The managed heart: Commercialization of human feeling. Berkeley, CA: University of California Press. Komaromy, C. (2020). The performance of researching sensitive issues. Mortality, 25(3), 364–377. Lee, R. M. (1993). Doing research on sensitive topics. London: Sage. Lee, Y. O. & Lee, R. M. (2012). Methodological research on ‘sensitive’ topics: a decade review. Bulletin of Sociological Methodology/Bulletin de Methodologie Sociologique, 114(1), 35–49. Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. London: Sage. Markowska-Manista, U. & Górak-Sosnowska, K. (2022). Tackling sensitive and controversial topics in social research-sensitivity of the field. Society Register, 6(2), 7–16. Mallon, S. & Elliott, I. (2021). What is ‘sensitive’ about sensitive research? The sensitive researchers’ perspective. International Journal of Social Research Methodology, 24(5), 523–535. Manders, G. & Galvani, S. (2014). Learning from the research process: Discussing sensitive topics as a cultural outsider. Social Work Education, 34(2), 199–212. https://doi​.org​/10​.1080​/02615479​.2014​ .977630. McGowan, W. (2020). ‘If you didn’t laugh, you’d cry’: Emotional labour, reflexivity and ethics-aspractice in a qualitative fieldwork context. Methodological Innovations, 13(2). https://doi​.org​/10​.1177​ /2059799120926086. Mula, J., Rodríguez, C. L., Domingo Segovia, J., & Cruz‐González, C. (2022). Early career researchers’ identity: A qualitative review. Higher Education Quarterly, 76(4), 786–799. Obeysekera, G. (1984). The cult of the goddess Pattini, Chicago and London: University of Chicago Press. Pandey, M. (2023). Interviews with men convicted of rape: reflections and lessons of a female researcher in a male Delhi prison. Gender a Výzkum, 24(1). Pearlman, W. (2023). Emotional sensibility: Exploring the methodological and ethical implications of research participants’ emotions. American Political Science Review, 117(4), 1241–1254. Perera, S. (1997). The social and cultural construction of female sexuality and gender roles in Sri Lankan society, Changing Gender Roles and Relations. Center for Women’s Research, Narahenpita, 1–16. Pillay, S. R. (2023). Vulnerable advantages: Re-searching my self while navigating queer identity, research ethics, and emotional labour. Feminism & Psychology, 33(3), 393–410. Powell, P. A., Wills, O., Reynolds, G., Puustinen-Hopper, K., & Roberts, J. (2018). The effects of exposure to images of others’ suffering and vulnerability on altruistic, trust-based, and reciprocated economic decision-making. PLoS ONE, 13(3). https://doi​.org​/10​.1371​/journal​.pone​.0194569. Roberts, L. M. (2005). Changing faces: Professional image construction in diverse organizational settings. Academy of Management Review, 30(4), 685–711. Shaw, R. M., Howe, J., Beazer, J., & Carr, T. (2020). Ethics and positionality in qualitative research with vulnerable and marginal groups. Qualitative Research, 20(3), 277–293. Sherry, E. (2013). The vulnerable researcher: Facing the challenges of sensitive research. Qualitative Research Journal, 13(3), 278–288. Sikic Micanovic, L., Stelko, S., & Sakic, S. (2020). Who else needs protection? Reflecting on researcher vulnerability in sensitive research. Societies, 10(1), 3–12. https://doi​.org​/10​.3390​/soc10010003. Thorneycroft, R. (2020). When does research end? The emotional labour of researching abjection. Methodological Innovations, 13(2). https://doi​.org​/10​.1177​/2059799120926350. Tilley, E., Strnadová, I., Ledger, S., Walmsley, J., Loblinzk, J., Christian, P. A., & Arnold, Z. J. (2022). ‘Working together is like a partnership of entangled knowledge’: Exploring the sensitivities of doing participatory data analysis with people with learning disabilities. In E. Borgstrom, S. Mallon & S. Murphy (eds), Unpacking sensitive research (pp.52–64). Routledge. Waters, J., Phillips, J., Westaby, C., & Fowler, A. (2020). The emotions and emotional labour of criminological researchers. Methodological Innovations, 13(2). https://doi​.org​/10​.1177​ /2059799120926059.

From field to self: (in)sensitivities encountered in researching sexual harassment  353 Wellings, K., Branigan, P., & Mitchell, K. (2000). “Discomfort, discord and discontinuity as data: using focus groups to research sensitive topics”. Culture, Health & Sexuality, 2(3), 255–267. Williamson, E., Gregory, A., Abrahams, H., Aghtaie, N., Walker, S. J., & Hester, M. (2020). Secondary trauma: Emotional safety in sensitive research. Journal of Academic Ethics, 18, 55–70.

24. Researching rape that is not recognised: an auto/biographical understanding of woman-towoman rape and sexual assault Rebecca (Bex) Twinley

INTRODUCTION In this chapter, I reflect on my auto/biographical experience of researching a form of adult sexual perpetration that is, conceivably, the least recognised: rape, sexual assault and abuse perpetrated by women upon other women. In contemporary societies, rape and sexual assault are most commonly discussed as types of gender-based violence, whereby perpetrators of sexual violence against women are men. Over the last few decades, there has (rightly) been increasing recognition of man-to-man perpetration (Pearson & Barker, 2018) and, more recently, woman-to-man perpetration (Bates & Taylor, 2019). Though small-scale, my doctoral research work offers some contextually relevant production of knowledge that exposes the stories of women who have been made to feel alone in their experience of being raped or sexually assaulted by another woman or women.

DEFINING TERMS One of the understood challenges of my profession as an occupational therapist is the misleading term ‘occupation’ in the title itself (Hattjar, 2019). The precise aim of my doctoral study includes this term, too, and so providing definitions of my profession and discipline-specific terms is warranted. For context, my doctoral study aimed to explore the perceived impacts of woman-to-woman rape and sexual assault, the subsequent experience of disclosure, reaction and support, and the consequences for victims’/survivors’ subjective experiences of occupations. Occupation/s Occupation/s are the things people want, need, or are made to do that occupy their time on a daily basis; this, therefore, includes occupations such as getting washed and dressed, caring for others, cooking, socialising, volunteering, working, playing, and exercising. As occupational therapists aim to promote or improve health through occupation/s, there has been a strong focus on those which are understood or perceived to be safe, positive, socially acceptable, productive (in the Western sociocultural notion of productivity), creative, and meaningful. However, I have offered the profession a critical perspective of the traditional and limited theories of ‘occupation’ (which, themselves, also originally drew from neoliberal Western culture), asserting there are: ‘Occupations that remain unexplored—such as those that are health 354

Researching rape that is not recognised  355 compromising, damaging, and deviant—and which therefore challenge the pervasive belief in a causal relationship between occupation and health’ (Twinley, 2017, p.29). From this critical perspective, I suggest it is possible to enhance a more complete understanding of people and the absolute array of occupations they experience, including their engagement in occupations that are violent or occupations of survival—as I shall discuss. Occupational Therapy The World Federation of Occupational Therapists (WFOT) (2012) and Occupational Therapy Europe (OT-EU) (2018) similarly define occupational therapy as a person-centred health profession concerned with using occupations to promote the participation, health, and wellbeing of people of all ages. OT-EU (2018) states: ‘Occupational therapists do this by supporting persons’ engagement in occupations and activities that they want, need and choose to do in everyday life.’ This is achieved through using occupations as means (such as practice is based on using occupations for the purpose of assessment or intervention) and as an end (that is, occupations are the goal achieved as an outcome of intervention) (Goldstein-Lohman, Kratz & Pierce, 2003). Occupational Science Broadly defined, the young (interdisciplinary) field of occupational science is the scientific study of people’s experiences of occupation/s. Hence, occupational scientists study the complexity of human occupation and typically aim to apply the relevance of this to occupational therapy practice (Prodinger & Stamm, 2012). The prominent occupational scientist Whiteford (2023, p.548), explains the relationship between occupational science and occupational therapy: Occupational science is informed by real world issues and lived experiences, and enquiry within it is largely aimed at illuminating our understandings of these so that they may inform societal awareness, policy, and practice(s). Occupational therapy is informed by a disciplinary knowledge base unique to its domain of concern (incorporating knowledge derived from occupational science research as well as from other disciplines) aimed at actively addressing occupational phenomena.

As a methodological choice, due to my profession as an occupational therapist and a related occupational focus on the consequences of being victimised for victims’/survivors’ subjective experiences of occupations, I combined working auto/biographically with an occupational science perspective.

AN OVERVIEW OF THE CHAPTER As an advocate of a sociologically informed auto/biographical approach, I write in the first person as I make use of the opportunity to author this chapter with the aim of engaging, critically and reflectively, with my positionality; simultaneously, I do so while seeking to illuminate my auto/biographical experiences of researching a sensitive and traumatic topic. Hence, I have structured the rest of this chapter in the following way: 1) auto/biography and researcher positionality—I begin by discussing the significance of ‘I,’ as I critically reflect on

356  Handbook of sensitive research in the social sciences embracing a sociologically informed auto/biographical approach. 2) Woman-to-woman sexual perpetration—I then share some of my findings on the experiences of woman-to-woman rape and sexual assault. 3) When the researcher is silenced—next, by drawing on my doctoral study (completed 2016) and a more recent study (conducted 2021), I show howjust as womanto-woman rape and sexual assault occur in a context of silence and invisibility—researching this topic is a pursuit rich with experiences of being silenced and of being made to feel others want me to be invisible, and lastly. 4) Sensitive and traumatic: navigating vicarious traumatisation—I end with a return to the premise of this collection and consider sensitive research when research is beyond this.

AUTO/BIOGRAPHY AND RESEARCHER POSITIONALITY To explicate my positionality within my doctoral research, I approached the work as someone with a social science, occupational science, and healthcare profession background (as an occupational therapist), as well as identifying as a woman who has experienced being raped and sexually assaulted by other women. It was my director of studies, Professor Gayle Letherby, who helped me to realise the methodological value of utilising a sociologically-informed auto/ biographical approach. The position of the forward slash is very deliberate and necessarily distinguishes the auto/biographical approach from autobiography. Liz Stanley, a founding member of the British Sociological Association’s Auto/Biography Study Group, explains further: ‘auto-slash-biography... disputes the conventional genre distinction between biography and autobiography as well as the divisions between self/other, public/private, and immediacy/ memory’ (Stanley, 1992, p.42). Practically, auto/biography gave me the philosophical underpinnings and rationale for writing from the first-person perspective of ‘I.’ As Letherby (2013, p.142) advises, ‘… writing about the other always involves some reference (even if not expressed on paper) to the self. Within research, issues of auto/biography are complex, with the ‘“I” itself helping to demonstrate this complexity.’ Consequently, I chose then—and continue to choose now—to state my position in my work. For instance, in my thesis, I included my story (my Self) as I re-presented the stories and selves of my respondents (see Chapter 21). Declaring my positionality in this way occurred at a time before the subsequent, increasingly evident push for the inclusion of positionality statements in academic journals and other research publications (Savolainen et al., 2023). This use of reflexivity in sensitive research has been explored in relation to the ethical and emotional work that conducting research on sensitive topics with people from vulnerable and marginalised groups can present (Shaw et al., 2020). For instance, echoing Woolf (1996) on the task of the autobiographer, I would argue that it is the task of the auto/biographical researcher to make a publicly suitable version—often, ethically, not least in the sense that they must maintain the anonymity of each respondent—of the private accounts and experiences that their respondents have shared with them. Accordingly, my intent and responsibility were to raise awareness of an issue that had silenced me and all of my respondents while, simultaneously, maintaining the privacy of my respondents as people who shared their extremely private stories. For myself, the declaration and inclusion of my positionality within my research went beyond a statement and ran through the entire process and practice of doctoral study, as well as throughout the thesis itself. In actuality, I had considered and reflected upon my positionality

Researching rape that is not recognised  357 in all of my previous (undergraduate and postgraduate) studies; this is considerably unlike the suggestion that those doctoral student researchers who are expected to recognise and reflect on their positionality and its effects on their work may find it difficult due to never having done so before (Holmes, 2020). The difference, however, prior to and throughout most of my doctoral study was the particular sensitivity surrounding the first disclosure of my position as a victim/survivor of rape and sexual assault, especially that perpetrated by other women. This posed challenges that were primarily related to my experiences of growing up as a woman with same-sex attraction and the prejudice, discrimination, rejection, and nonacceptance I had personally and professionally experienced. I wrote about this in my thesis, explaining how I felt in the initial time after being raped by a woman: I began to feel at odds with some of the lesbian feminist literature I had read whilst studying for my sociology degree. As Barnes (2011) explains, lesbian feminism was established through the vision of a ‘lesbian utopia’, in which relationships between women are understood as being incapable of being unequal, exploitative, or violent … the notion of woman-to-woman violence (in whatever form) presents a threat to the dominant feminist ideology, which firmly established violence against women as being attributed to the historical context of patriarchy and misogyny (Weissman, 2009). However, contrary to such beliefs, I have personally experienced the way in which a woman can use force and have control over another woman in order to be violent, threatening, and aggressive in a verbal, physical, and sexual way. Consequently, my position as a [woman with same sex attraction] WSSA researcher of [woman-to-woman rape and sexual assault] WTWRSA is grounded within my first-hand experience and subsequent realisation that women are as capable of being violent toward women (and others) as men. (Twinley, 2016, p.30)

Savolainen et al.’s (2023) critique of positionality statements includes the argument that they undermine the measures in research practice taken to safeguard the impartiality of research through the disclosure of personal information by contributors (scholars). It is a traditional view such as this that advocates of an auto/biographical approach resist because the auto/ biographical approach actually allows the researcher to work with, rather than on, the participants and also allows the researcher to document their struggles and origins (Howatson-Jones, 2011). This meant that as a researcher, I would not have to ‘bracket’ any preconceptions; instead, I could openly acknowledge that it was my preconceptions and prior experiences that generated the determination to complete the research (Lowes and Prowse, 2001). There is a freedom in working auto/biographically that I would totally advocate for—even when the challenges of doing so can be deeply felt, personally and professionally. The latter will be explored in the last two sections of this chapter. As a personal example, I once attended a research study group whilst in the midst of my doctoral studies; we were asked to go along with stories, concerns, challenges, and rewards with reference to both researching emotions and the emotional aspects of doing auto/biographical work. I took some research diary entries, which included the excerpt below. This demonstrates the effects of retraumatisation I was experiencing alongside an acute awareness of my personal grit and drive to complete the work for my respondents, just as much as myself: 07/03/14. I’m trying to write a first draft of my methodology chapter for transfer. I’ve got to the part where I discuss emotional safety and I’m sat here thinking about the reality of when this is compromised. Since starting psychotherapy myself a few months ago my sleep pattern is even more disturbed … Listening to, transcribing, and analysing the stories of my research respondents has amplified my own lived experience and the associated fears and anxieties I live with. But in listening to them and hearing their voices I am determined more than ever to try and raise awareness of the

358  Handbook of sensitive research in the social sciences debilitating effects this kind of sexual assault can have for people. For us: my research respondents and I.

WOMAN-TO-WOMAN SEXUAL PERPETRATION The time that I was raped by a stranger—a woman – in the toilet of a nightclub, while on a night out to meet up with my friend ‘Ben,’ immediately became a catalyst for some change; however, much of this was not in any way positive or affirming, in terms of it being experienced as post-traumatic growth. Being very physically and violently raped as a young adult (19 years old) left me feeling isolated in the experience and its effects. Seeking Answers in the Void To intensely search for but only expose an almost total lack of information or resources regarding woman-to-woman sexual perpetration enhanced my feelings of detachment and difference. This event was not the first or last time I have been raped or sexually assaulted by another woman. Yet, it—somehow novelly—possessed the power to severely reinforce my compromised sense of safety, heightened vulnerability, and inability to understand and process my personal reactions to any of my experiences. This was heightened by the nonexistence of service provision tailored to my unique needs and was experienced against a legal and cultural historical backdrop of a lack of legal recognition of women as capable of rape. In England (where I reside and work) and Wales in the UK, the Sexual Offences Act (2003) is the governing law of rape, and it has very real implications for victims/survivors of womanto-woman sexual perpetration, mostly because it defines the offence of rape, under section one, as: ‘The defendant intentionally penetrating, with his penis, the vagina, anus or mouth of another person (“the complainant”)’. In resistance, a group of students and lecturers in law at Bournemouth University (Nizirova et al., 2022), UK, assert: … the Sexual Offences Act 2003’s [1] penile penetration requirement is not fit for purpose. Whilst the Sexual Offences Act modernised ‘rape’ through the introduction of an agendered victim, it is now time to introduce the agendered perpetrator. Doing this will allow the ‘law of rape’ to move beyond heteronormativity and better capture the diverse sexualities and gender identities present in contemporary society. Moreover, doing this will offer survivors of non-penile rapes with the appropriate legal recognition of harm caused.

This really demonstrates why—of the limited resources that have been published—there are titles like that of Girshick’s (2002) book: Woman-to-Woman Sexual Violence: Does She Call It Rape? Without the recognition that women are capable, there is no capacity for progression and reform of legal definitions and any associated reporting or prosecution of offences. This is further reinforced by contributors to the discourse who assert the issue as one that is genderbased, albeit whilst also acknowledging the need to look beyond a heteronormative perspective: ‘Although rape and sexual assault can happen to anyone regardless of sex, sexual identity, or gender, the key risk is being female’ (Public Health Scotland, 2023). In my reading, I found that, of those researchers who acknowledge women as sexual perpetrators, the majority chose to focus their efforts (as do the health and criminal justice services) upon men as perpetrators,

Researching rape that is not recognised  359 the justification for which predominantly being that men represent the majority of offenders (Lonsway et al., 2009; Oliver, 2007). This dominance of perceiving and examining men as perpetrators is evident, even in commentary that accepts women can commit sexual offences. Back in 2012, Jewkes wrote a report for the South African Medical Research Council, discussing risk factors that increase the probability of rape perpetration. In this, Jewkes recognises women as perpetrators. However, Jewkes (2012, p.7) chose not to include any discussion of the literature, stating: Both men and women perpetrate sexual violence, however the majority of sexual offences are committed by men (Steffensmeier D, Zhong H et al. 2006; Sikweyiya Y and Jewkes 2009; Deering 2010). Most papers focus on men as perpetrators rather than including women. Due to the small literature on female perpetrators, and still poorly understood nature of their coercion of men, this review focuses on men as perpetrators.

Globally and statistically, men are reported to be the main perpetrators of all forms of violence, including sexual violence against women (El Feki et al., 2017). Accordingly, sexual offences are viewed and documented as gender-based acts of sexual violence, with increasing acknowledgement that there needs to be some commitment towards the experience of male victims/survivors (Crown Prosecution Service [CPS], 2017). With this acknowledgement comes the realisation that victims/survivors need a coordinated and responsive approach from all responsible services, as the CPS affirms in their (currently not updated) Violence Against Women and Girls (VAWG) strategy (2017, p.7): Ending violence against women and girls [VAWG], including responding to male victims of VAWG crimes, requires the cooperation and engagement of multiple sectors of society including (but not limited to) the CJS [Criminal Justice Services], education, health services, as well as specialised support services for victims.

Here, the problem is the complete lack of acknowledgement that women can be, and are, perpetrators of violence and abuse against other women (as well as men). Globally, this means various services are targeted predominantly to meet the needs of women who are victims/ survivors (and, to a lesser but growing extent, men who are victims/survivors) of violence and abuse perpetrated by men. With challenges experienced by these service providers and their users—such as lack of training (WHO, 2024), social stigma, funding cuts, and reliance on volunteers—the short-term and long-term health needs of all victims/survivors are not being sufficiently addressed (Shahali et al., 2016). As a researcher, all of this has contributed significantly to my longing for change and my personal motivation to gather and share stories from other women who have been sexually victimised by a woman or women. Lessening feelings of loneliness in such an experience is, I would strongly assert, the key to diminishing some of the shame, solitariness, and confusion woman-to-woman rape and sexual assault can trigger. The realities, however, of doing so are what I focus on in the last two sections of the chapter. Searching in the Silence: Respondents and Data Collection Methods I align with those commentators who have justifiably raised the issue of terms—such as ‘hard to reach’ or ‘hidden’—used by researchers to describe their participants when their

360  Handbook of sensitive research in the social sciences participants (or respondents, as is my preference) are not readily accessible or visible (Ellis, 2023; Rockliffe et al., 2018; van der Ven, 2022; see Chapter 1 in this volume). Rather, the onus is on the researcher (as it was for me) to address barriers, spend time, and be flexible and creative in finding strategies that facilitate the recruitment of respondents (van der Ven, 2022). Accordingly, I used a mixed-methods approach, collecting data in two phases to allow for respondents in phase one (a web-based survey) to potentially be recruited to share their stories in phase two (individual interviews). Strategies I took to promote the survey were through the use of social media (especially Twitter), advertising on websites of consenting organisations and in magazines, and personally travelling to distribute recruitment materials across the UK (such as in art centres and coffee shops). The survey fulfilled two key purposes: first, to gauge awareness about the prevalence of woman-to-woman rape and sexual assault and, second, it was used as a purposive sampling tool in order to recruit participants for the second phase of the research, with the final section of the survey asking respondents to leave an email address if they were interested in sharing their story in more depth. In total, 159 survey responses were generated, with an age range of between 18 to 72, with the mean age being 33.5. Responses came from 20 different countries. Please see my thesis for further respondent details (Twinley, 2016). In phase two, ten respondents shared their stories in face-to-face semi-structured interviews, and an eleventh chose to do so through correspondence. This facilitated my exploration of personal meanings by gaining rich data that represented the depth, complexity, and individuality of each second-phase respondent’s lived experience. Rigour and trustworthiness were established through the use of several reflective diaries, field notes (noting responses during the face-to-face interviews, for example), and member checking (though only two respondents wanted to check their interview transcript for accuracy). The study was given full approval by the Faculty Research Ethics Committee at the University of Plymouth. Respondents were over age 18, and those who identified as victims/survivors were asked to share about victimisation experiences that occurred at or after age 16—the age of sexual consent in England and Wales. Findings: Survival Reactions of Victims/Survivors Data from the survey revealed that the majority of respondents (n=67, 42.4per cent) had heard of a woman sexually assaulting another woman but had never experienced it themselves. I understood this to indicate the likelihood of many other victims/survivors who, generally, remain unrecognised and, therefore, under-represented in any research endeavours. The second-largest group of 59 (37.3per cent) respondents had experienced a woman sexually assaulting them. Of these, 38 (24.1per cent) had also heard of a woman sexually assaulting another woman. No respondents believed that woman-to-woman rape and sexual assault were not possible (see Figure 24.1). In phase two, after the interviews were transcribed, I used the method of inductive thematic analysis to identify, analyse and report patterns, similarities, themes, and subthemes within the data (Braun and Clarke, 2006). Subsequently, four open (key) themes from the victim/ survivors’ narratives were developed (see list below).

Researching rape that is not recognised  361

Figure 24.1  Prevalence and perception of woman-to-woman rape and sexual assault 1. Identity 1.2. Sexual identity 1.3. Sexuality 1.4. Gender identity 1.5. Conceptions of self 1.5.1. As victim/survivor 1.5.2. As daughter 1.6. Perpetrator/s identity 1.7. Women as sex offenders 2. Emotion 2.2. Secrecy 2.3. Disclosure 2.4. Reporting, proof, and justice 2.5. Belief and support 2.6. Shame 2.7. Fear and anger 2.8. Hope 3. Survival 3.2. General health and wellbeing

362  Handbook of sensitive research in the social sciences

4.

3.3. Trauma 3.3.1. Coercion, violence, and injury 3.3.2. Multiple witnesses and perpetrators 3.4. Mental health and posttraumatic stress disorder 3.5. Alcohol use 3.6. Self-harm and suicidal behaviour 3.7. Accessing support Occupation 4.2. Daily occupations 4.3. Care and restoration 4.3.1. Self-care 4.3.2. Caring for others 4.4. Work 4.4.1. Work as triggering and as maintenance 4.4.2. Could have performed better and achieved more 4.5. Leisure 4.6. Roles and relationships 4.7. Alienation and regret (failure to satisfy inner needs)

I found that victims/survivors experience various issues that disrupt or alienate them from being able to engage in and perform some of their daily occupations (theme four). This impacted other aspects of their lives; for instance, many reported how their self-perceived ability to identify as a victim/survivor was compromised (theme one: identity). In addition to having their experiences invalidated, the related trauma had a long-lasting emotional impact (theme two: emotion). Overall, I found woman-to-woman rape and sexual assault to be a complex form of sexual perpetration; equally, its impact upon the victim/survivor is profound and largely unaddressed and/or unresolved. This was clearly palpable from the phase two respondents’ accounts of how they have survived (theme three: survival). The discussion that follows focuses on two sub-themes of theme three: 3.5: alcohol use and 3.6: self-harm and suicidal behaviour, as highlighted above. As respondents described their post-traumatic reactions to being sexually victimised by a woman (or women), they spoke about some of the adaptive and maladaptive ways in which they survived through engagement in their occupations. After being sexually victimised, survival takes multifarious forms, ranging from self-defence, managing past and recent traumatic experiences, and a determination to continue to live on—all of which are examples of the human capacity to survive. Hence my use of the term victim/survivor, which, as Taylor (2004, p.5) describes: ‘the reality of victimisation as well as the fact that the person who is victimised also survives – survives and conquers a crime that society is still unable to deal with effectively.’ 1. Survival: alcohol use Five of the interview respondents reported using alcohol subsequent to their victimisation (Jessica, Keira, Lauryn, Sarah, and Simone). As a post-assault coping strategy (Ullman et al., 2018), alcohol was reportedly used either as either an escape, a way to feel better, or as a means to think less about their rape or sexual assault experiences:

Researching rape that is not recognised  363 … as soon as I knew I had clear time out and off work and things I would drink really heavily… when I had time and space I filled it with getting drunk because, er – and it didn’t make things better – but it’s, it’s how I coped, it’s what I did (Simone). … I wasn’t a very nice person when I was drinking, but I was drinking because I was trying to hide something I guess (Keira).

The victims’/survivors’ alcohol use compromised different aspects of their lives. For instance, Keira and Sarah reported their performance at work was affected. Keira believed that she could have performed better at work if she hadn’t consumed the amount of alcohol she was drinking each night, which left her feeling tired, hungover and depressed. In addition to work performance, Sarah spoke about her health and wellbeing and focused on the weight she gained through her increased alcohol use. Moreover, the victims’/survivors’ alcohol use compromised their ability to self-care, including disrupting their ability to meet their daily basic needs, such as eating and the restorative activity of sleep. Keira reported that her alcohol use led to feeling tired as well as depressed. Even though she experienced poor sleep, Keira spoke about how sport and exercise had been, and still was, an important part of her daily life. Indeed, Keira identified going to the gym as her core self-care occupation. Aside from the commonly understood benefits of exercise and the routine this provided, Keira felt that—had she not attended the gym after work—her alcohol use would have been even worse. This was primarily because she would have had more time to spend on drinking in the evenings. Oh I wouldn’t eat; eating was drinking … I was paying my bills and then whatever was left was just to buy alcohol, basically … I wasn’t really buying any food … I probably wasn’t the healthiest. But I would still go to the gym but just come home and drink and not eat.

Evidently, Keira’s subjective experience of occupation was dominated by the internal conflict between trying to self-care by going to the gym and self-medicating by drinking alcohol. Still, Keira’s alcohol use dictated when she attended the gym; as she explained, she didn’t go in the mornings because she would still have been drunk. Likewise, Simone’s enjoyment of the team sport of netball was impacted in part by her alcohol use and in part by other factors, as she explained: I think all the things that I’d started to do like smoking and drinking and things and not eating meant that I didn’t have energy so I stopped doing, you know, sport that I used to like doing … I used to really like netball, um, and I, I just stopped going … and actually I lost contact with a few of the girls because … there was no way I could have told them why I was being the way I was.

2. Survival: self-harm and suicidal behaviour In addition to alcohol use, self-harming and suicidal behaviours were performed in completely contrasting ways. Amongst the victims/survivors that mentioned this, Ali, Cailey, and Eleanor self-harmed, and Eleanor and Keira both lived through a suicide attempt. They spoke about these self-harming and suicidal thoughts and behaviours as occurring either in response to their victimisation—as a way to try to cope—or as a means to express the need for help. For instance, in Cailey’s case, her self-harm was a deliberate attempt to get help from teaching staff she felt an attachment with at the time: I went down the route of self-harming in quite a bad way … as I’ve looked back and had counselling and reflected back, I’ve realised that that was maybe because I wasn’t out and I couldn’t tell

364  Handbook of sensitive research in the social sciences anybody, and so if someone saw that on my arms or on my body – particularly because the people who I related best were the P.E. staff and they would see me in the least clothes – if they noticed that they might be like ‘What’s wrong?’ and might be able to save me from it. Um ... and helped me.

Cailey also disclosed having suicidal thoughts, which she felt she ‘came through.’ Eleanor and Keira reported non-fatal suicide attempts. Eleanor mentioned this in the context of her depression, saying: ‘I attempted suicide when I was 16, which obviously didn’t achieve anything.’ Keira spoke to me about her feelings after being sexually assaulted by a woman and her heavy alcohol use, and said: ‘But, it came to a point where, when I tried to take my own life, that I woke up the next morning – thank god that it didn’t, I didn’t.’ Keira’s suicide attempt was nonfatal and actually became the catalyst to find help through the form of a counsellor: ‘Once I tried to commit suicide then it was time to live or die, basically, so I thought: Well, if you’re going to live, you might as well live a happy life.’ These findings illuminate the actions that victims/survivors may take in an effort to maintain a state of wellbeing at the rudimentary level that allows them to cope with their daily lives. Occupations are, among other things, the means through which people can express themselves, connect with self and others, derive meaning and satisfaction, and experience improved health and wellbeing. Because of this, any event that causes a biographical disruption (a concept introduced by Bury, 1982) in people’s lives has the potential to compromise these healthier and life-affirming benefits of occupations. Indeed, my unique focus on victims/survivors’ subjective experiences of occupations revealed the impact of trauma and the associated ways in which my respondents enacted endurance, survival, and renegotiation of their identity through a variety of occupations that could be perceived as anywhere on a continuum of ‘adaptive’ to ‘maladaptive.’ However, occupations are more complex than any such binary distinction, as the subjective experience can alter in response to, or because of, diverse factors such as trauma responses. Crucially, I cannot emphasise enough my appreciation for my respondents for sharing their stories of survival when their efforts to live safely and seek any form of help or support had been compounded by feelings of isolation and were met with disbelief (silencing) and blame.

WHEN THE RESEARCHER IS SILENCED As a researcher with lived experience of being silenced after being raped and sexually assaulted by a woman and then being silenced again for wanting to research the issue, my work and I are proof that the intricacies of surviving and researching sensitive and traumatic topics are very tangible, yet do not totally prevent either from being achieved, to whatever extent. Thus far, I have drawn upon experiences related to my doctoral study; here, I draw upon a more recent encounter to show how—just as woman-to-woman rape and sexual assault occur in a context of silence and invisibility—researching this topic has been a pursuit abundant with experiences of being silenced. I have been left feeling that others would prefer me to keep quiet about woman-to-woman rape and sexual assault or, better still, to disappear and for all of my scholarly works to remain invisible. This, in fact, was a driving motivational factor for accepting Pranee’s kind invitation to contribute to this text: I see this chapter as an act of resistance against this silencing.

Researching rape that is not recognised  365 Last year, I had a peer-reviewed paper on a separate study that had been prepared for publication by the journal editor withdrawn just prior to its publication because a representative of the association the journal is linked to raised their legal responsibilities (for the journal). This was due chiefly to their concerns about the sensitivity of the topic of woman-to-woman rape and sexual assault and the negative attention both the article and I could have received. I was silenced, as were my findings. It took me almost a month to figure out how or what to write back in response to this disappointing decision. It took a harnessing of power, motivation, anger, and courage to compose that email (not sent as confidential), in which I wrote: in terms of the concerns about the sensitivity of this topic that have been raised and having a duty of care to me and to readers, this is not the first publication re: this topic and I see this decision as doing exactly what the underlying intent of my work is: it silences the very real existence of a form of sexual victimisation that is barely discussed/exposed. The comment re: unwanted social media attention is interesting considering I have engaged with media (BBC Women’s hour and BBC3) and have never received this attention, only other victim/ survivors reaching out in response.

Further instances I can recall whereby other people’s level of ‘comfort’ with my topic has been apparent to me include: 1) being advised by another researcher of sexual violence (perpetrated by men against women) that I should change my focus as I would not find participants to recruit; 2) unlike every other student in the room, I was denied the space to introduce myself and my (PhD) topic in a postgraduate research meeting with a special guest researcher. Instead, the facilitator introduced me and simply informed the guest I was researching ‘trauma’. Additionally, I was cautioned by a previous line manager that my topic was too ‘niche’ and I would risk ‘pigeon-holing’ (restricting) myself and my career.

SENSITIVE AND TRAUMATIC: NAVIGATING VICARIOUS TRAUMATISATION I end with a return to the premise of this collection, which was to consider sensitive research in the social sciences, yet I do so by considering research that goes beyond what is deemed solely as ‘sensitive’ to include researchers working with trauma. The former—sensitive research— has been defined in various ways (see Chapter 1). Some commentators understand there to be different reasons—criteria, even—for research on sensitive topics to be deemed ‘sensitive.’ For instance, Agllias (2011) refers to sensitive research as that which challenges existing ideologies and exposes taboo topics (especially those regarded as socially and politically sensitive), or that which reveals information that is either stigmatising or incriminating, and that which has legal and moral implications. A distinction can be made between ‘sensitive’ research and ‘traumatic’ research, given that the latter regularly entails researchers experiencing typical responses to conducting research on traumatic issues. Indeed, researchers working with trauma (in my case, sexual trauma) are deemed at high risk of negative impacts due to any combination of being exposed to traumatic information, the nature of respondent disclosure, or the researcher’s own personal experience(s) (Williamson et al., 2020), as I will soon elaborate on. Before doing so, I want to raise the importance of considering who might constitute the audience or the people who engage with research data and/or findings. In our co-edited text,

366  Handbook of sensitive research in the social sciences The Doctoral Journey as an Emotional, Embodied, Political Experience: Stories from the Field, Professor Gayle Letherby and I (2022) reflect upon our engagement as a student-supervisory team. This, from Gayle, illuminates how the process is emotional work for supervisors and can lead to questioning the support mechanisms in place for the student (researcher) and the supervisor/s: Reading Bex’s work was always a sobering, often a harrowing experience and I am conscious and empathise with the amount of emotional work involved for a student, in this case Bex, in this kind of work … a very first requirement should, I think, be advice on how to (as fully as possible) support a student who is studying a potentially emotionally, or physically, dangerous issue. But additionally, I think, there is a need for some recognition that supervision itself may, indeed probably will, involve emotion work, not only in terms of support of and for the student but also in terms of engagement with data that is upsetting, unsettling, shocking. (Twinley and Letherby, 2022, pp.185–186)

Exposure to Traumatic Information and the Nature of Respondent Disclosure Returning to the researcher experience, though concentrated on gender-based violence, Williamson et al.’s (2020) discussion helpfully specifies how working with violence-related trauma involves engaging with the very reality of people’s capacity to harm and abuse other people. In 2013, Walby suggested there has been increased visibility of interpersonal violence in daily life; assuming this trend has continued, an implication of this is the impact on people’s perspective on humanity and the world, which can, in turn, impact their sense of personal safety. In the context of being a researcher of trauma and violence, strategies for emotional safety must be considered, especially when exposed to the content of the data uncovered and experiencing the manner in which it is often disclosed by respondents. Williamson et al. (2020, p.57) explain: because stigma, embarrassment, shame and guilt often exist around the experiences of abuse, participants may not have communicated their experiences previously … Consequently, when given an opportunity to speak in a safe environment, with someone independent of their situation who is empathetic, people may share material which is raw and unprocessed, finding a release of expression, and pour out detailed descriptions of events and incidents.

As I found through post-interview (email) contact, all of my respondents reported that their engagement in my research had beneficial aspects. I include an excerpt from ‘Isla,’ who wrote: It was my pleasure talking to you last week. You made, what could have been quite a traumatic experience, relatively easy and as comfortable as could be expected. I found you to be very non judgemental and felt really listened to. So thank you for that. (Anon, personal communication).

The risk of traumatisation is not to be minimised but does also need to be considered along with the long-understood potential benefits for victims/survivors who engage in research as respondents, such as being able to disclose in a safe environment and experiencing some extent of ‘healing’ (Campbell et al., 2004). However, for myself, I needed to implement a strategy for survival, which I wrote about in my thesis (and also included as an appendix). This was largely about establishing a break from my immersion in the data and the content of the stories I was listening to and analysing. Recalling this time, I would like to acknowledge the editor of this collection, Professor Pranee

Researching rape that is not recognised  367 Liamputtong, whose advice was like the necessary approval I needed at this difficult stage in my doctoral work to implement such a strategy: ‘researchers who are researching vulnerable issues and people must make their judgments on the impact of their research on not only the participants, but also on themselves as researchers’ (Liamputtong, 2007, pp.6–7). Researcher’s Own Personal Experience(s) The multifaceted construct of vicarious trauma was coined by McCann and Pearlman (1990) to describe the harmful psychological effects working with trauma can have on those practising (therapists) and researching in this area. Along with secondary trauma and compassion fatigue, vicarious trauma is one of the most frequently used constructs in empirical studies that examine the emotional impact of working with trauma victims/survivors (Quitangon, 2019). In their aim to understand the vicarious trauma and emotional labour of criminological research, Moran and Asquith (2020) suggest the negative or less-desirable impacts could be greater when the researcher has direct personal experience of the issue being researched. As colleagues in this text have written about, the emotional work of researching sensitive issues is something that warrants—deserves, even—ensuring a plan is made for the researcher’s own self-care. Aside from processing my own traumatic memories, I found that my everyday conversations with colleagues often included references to developments in the news about rape, sexual assault and abuse. Not only did my research (particularly the data collection) engulf me in the topic, but my everyday working and personal life seemed to become surrounded by it, too. However, in conducting this research, I was doing what I had wanted to for years and, as Letherby states, auto/biographical work is neither comfortable nor familiar; it compels researchers to engage with issues related to the use of emotion, vulnerability, and power (Letherby, 2013). To other researchers of sexual perpetration: I encourage readers to allow the time for this engagement.

CONCLUSION AND FUTURE DIRECTIONS This Handbook is unique in its cross-disciplinary focus on conducting sensitive research in both established and emerging areas in the social sciences. Writing this chapter has provided me with the opportunity to reflect on and share my auto/biographical experience of researching a form of adult sexual perpetration that is, conceivably, the least recognised: rape, sexual assault and abuse perpetrated by women upon other women. Embracing a sociologically informed auto/biographical approach was both a challenging and liberating methodological journey, whereby I was privileged to explore the lived experiences of a population of victims/ survivors who, like me, have all felt alone in their experiences. I found that woman-to-woman rape and sexual assault-related post-traumatic survival reactions and behaviours are complex. By focusing uniquely on victims’/survivors’ subjective experiences of occupations, my doctoral work revealed the impact of trauma and the ways in which respondents enacted endurance, survival, and identity renegotiation through a variety of occupations that could be perceived as somewhere on a continuum of ‘adaptive’ to ‘maladaptive.’ For occupational therapists, this suggests that by considering occupations that are not

368  Handbook of sensitive research in the social sciences necessarily healthy, comfortable, productive, or harmless, it is possible to work authentically and holistically, learning from people’s stories when they talk about their engagement in such occupations. In my experience, hearing my respondents’ stories revealed the ways in which each victim became a survivor. To fellow researchers, I hope this chapter provides some encouragement for your aspirations, as we are all responsible for paving the way for future research. As a researcher with lived experience of being silenced after being raped and sexually assaulted by a woman and then being silenced again for wanting to research the issue, my work and I are proof that the intricacies of surviving and researching sensitive and traumatic topics are very tangible, yet do not totally prevent either from being achieved, to whatever extent. Challenging pursuits in the area of ‘sensitive’ research can even encourage others; only yesterday, I received an email from a person hoping to pursue doctoral studies later this year about woman-to-woman sexual abuse survivorship, in which they wrote: ‘I would be really interested in consulting you if you had any time in the future. Your work really helped me have confidence that my study would be viable’ (Anon, personal communication, 15 January 2024).

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370  Handbook of sensitive research in the social sciences Twinley, R. & Letherby, G. (eds) (2022; 2021). The doctoral journey as an emotional, embodied, political experience: Stories from the field. Routledge. https://doi​.org​/10​.4324​/9780429330384. Twinley, R. (2017). The dark side of occupation. In K. Jacobs & N. MacRae (eds), Occupational therapy essentials for clinical competence (3rd ed.) (pp.29–36). Thorofare, NJ: Slack Incorporated. Twinley, R. (2016). The perceived impacts of woman-to-woman rape and sexual assault, and the subsequent experience of disclosure, reaction, and support on victim/survivors’ subjective experience of occupation (Doctoral dissertation). https://pearl​.plymouth​.ac​.uk ​/cgi​/viewcontent​.cgi​ ?article​=1011​&context​=hp​-theses Ullman, S. E., Lorenz, K., Kirkner, A., & O’Callaghan, E. (2018). Postassault substance use and coping: A qualitative study of sexual assault survivors and informal support providers. Alcoholism Treatment Quarterly, 36(3), 330–353. https://doi​.org​/10​.1080​/07347324​.2018​.1465807. van der Ven, L., van Baar, J., Wispelweij, R., & Jambroes, M. (2022). How to involve ‘hard to reach’ population groups in research projects. European Journal of Public Health, 32(Supplement_3). https://doi​.org​/10​.1093​/eurpub​/ckac129​.476. Walby, S. (2013). Violence and society: Introduction to an emerging field of sociology. Current Sociology, 61(2), 95–111. https://doi​.org​/10​.1177​/0011392112456478. Whiteford, G. E. (2023). Towards salience and solidarity: The importance of epistemic development in occupational science, occupational therapy, and the relationship between them, Journal of Occupational Science, 30(4), 546–559. https://doi​.org​/10​.1080​/14427591​.2023​.2242082. Williamson, E., Gregory, A., Abrahams, H., Aghtaie, N., Walker, S.-J., & Hester, M. (2020). Secondary trauma: Emotional safety in sensitive research. Journal of Academic Ethics, 18, 55–70. https://doi​ .org​/10​.1007​/s10805​- 019​- 09348​-y. Woolf, J. (1996). Silent witness: Memory and omission in Natalia Ginzburg’s “family sayings”. Cambridge Quarterly, 25(3), 243–262. World Federation of Occupational Therapists (2012). About Occupational Therapy, accessed 28 September 2024 at https://wfot​.org​/about ​/about​-occupational​-therapy#:~​:text​= Occupational​ %20therapists​%20achieve​%20this​%20outcome​,engagement​%20(WFOT%2C%202012). World Health Organization (2024, January). Strengthening health sector response to gender-based violence in humanitarian emergencies, accessed 28 September 2024 at https://www​.who​.int​/ health​ -topics​/gender​/strengthening​-health​-sector​-response ​-to ​-gender​-based​-violence ​-in​-humanitarian​ -emergencies​# tab​=tab​_1.

25. Adventures in sex work: a pracademic’s perspective in Switzerland Lorena Molnar

INTRODUCTION In this chapter, I explore the methodological and ethical dimensions of criminological research on sex workers in Switzerland, conducted by myself along with colleagues—among others, Jenny Ros, Silvia Pongelli, Guido Biscontin, and Marcelo F. Aebi—where sex work is legally recognised. Drawing on past studies, I reflect on the dual roles I inhabited during this research: as a social worker and as a researcher. This narrative covers fieldwork from 2016 to 2024 (for a previous narrative, see Molnar, 2023), involving cisgender and transgender female sex workers as well as male sex workers in both street and indoor settings, and online environments. I delve into the complexities of conducting research with vulnerable populations and emphasise the ethical imperatives of ensuring participant safety, maintaining confidentiality, and addressing the emotional and psychological impacts on researchers and participants alike. Collaborations with practitioners and engagement with the sex work community have been crucial in addressing these challenges, fostering a comprehensive understanding of the sex work landscape in Switzerland. It is important to note that sex work encompasses a range of sexual services provided in exchange for compensation, varying significantly across contexts (Azhar et al., 2020; Harcourt & Donovan, 2005). The perception and regulation of sex work vary widely by culture and historical period (Danna, 2014; Jahnsen, 2019; Jenkins, 2020). In Switzerland, a confederation composed of cantons, the regulation of sex work varies by region. For instance, street-based sex work may be legal in some cantons but not in others, and different local laws regulate sex work conducted in private settings like clubs, apartments, or hotels. Generally, premises managed by sex workers, such as in Geneva and Fribourg, operate under different regulations than those managed by third parties, who are prohibited from profiting directly from the sex work itself (for further analysis, see ProCoRe - Sexarbeit ist Arbeit, n.d.). The legal status of sex work in Switzerland provides a unique foundation for criminological research, allowing for nuanced studies within a regulated framework (Chimienti & Bugnon, 2018; Földhàzi, 2009; Ros, 2018, 2021). This contrasts with environments where sex work is criminalised. Conducting research in this legal landscape requires a thorough understanding of sex work as a multifaceted phenomenon and necessitates building trust with participants to facilitate data collection. The shifting dynamics of the industry, with a growing number of sex workers promoting their services online and fewer engaging with non-governmental organisations (NGOs), pose new challenges. This is particularly true for high socioeconomic status sex workers, who often bypass local support networks due to easier access to resources, rights, and health services. In the following pages, I reflect on how the epistemology of sex work can influence the methods and subjects of study. I offer illustrations from fieldwork in Switzerland and address 371

372  Handbook of sensitive research in the social sciences several challenges that have arisen, as well as discuss the ethical considerations of researching sex work. I also share my personal experiences in conducting practitioner-based research. Finally, I propose three future areas of study within the field of criminology as it pertains to sex work in Switzerland that I believe are worth exploring. This chapter represents my personal experiences and may not encapsulate the breadth of research experiences in other countries where sex work is legalised. By sharing the intricacies of my research journey, I aim to inspire early-career researchers and students to embrace the lessons that I, during my initial phases as a doctoral student and researcher, had to learn through experience.

EPISTEMOLOGIES ON SEX WORK Although this chapter is not about epistemologies on sex work, the axioms that a researcher accepts change their objects of study and methods (for an interesting analysis, see van der Meulen, 2011). Researchers in countries where sex work is legalised often shift their focus from preventing sex work or ‘rescuing’ sex workers from perceived fates, as seen in countries where it is criminalised. Instead, some scholars (among whom I include myself) (among others, Deering et al., 2014; Ros, 2021; Sanders & Campbell, 2007) concentrate on mitigating the risks of victimisation within the sex work industry. Like other researchers (Nencel, 2017), we recognise sex work as an existing reality, with the necessity for prevention strategies similar to other workplaces. In my previous piece, I discuss the evolution from viewing sex workers through the ‘object’ paradigm to the ‘choice’ paradigm (see Molnar, 2021). Under the ‘object’ paradigm, parts of the general population, media and some researchers still view sex workers as mere ‘objects’ selling their bodies, perceived as traumatised individuals lacking the agency to choose sex work voluntarily. This perspective heightens the risk of work-related victimisation for sex workers. If clients perceive a sex worker as a mere product, non-consensual acts are more likely to occur. Conversely, viewing sex workers as legitimate workers within a legal framework encourages prosocial behaviour among clients, aware that any violations will be prosecuted. I argue that the choice framework is more effective for research in sex work, particularly due to its positive implications for the community. While acknowledging the grim realities of human trafficking (Gajic-Veljanoski & Stewart, 2007) and the desires of some sex workers to leave the industry (Cimino, 2021), these do not negate the existence of consensual sex work. This topic remains a significant epistemological debate. However, engagement with sex workers’ alliances—formed by sex workers themselves—reveals that while sex work can be a choice (European Sex Workers’ Rights Alliance, 2024), it is a heterogeneous phenomenon that requires diverse measures depending on the actual needs of those involved. In that regard, methods such as Participatory Action Research can be valuable to understanding sex work and its intricacies while including the participants themselves in the research process (Connelly & Sanders, 2020; Graça, 2016; Jobe et al., 2022; Oliveira, 2018; van der Meulen, 2011). Participatory Action Research encompasses the production and exchange of knowledge alongside actions or interventions, aspiring for transformation, which involves a dual focus on the collective process of enquiry and the pursuit of social justice (O’Neill, 2010).

Adventures in sex work: a pracademic’s perspective in Switzerland  373

SWISS FIELDWORKS Fieldwork in Switzerland concerning sex work spans both online and offline environments, including streets, apartments, clubs, and bars in both bustling urban centres and idyllic Swiss villages. Since starting my research in 2016 and continuing through to 2024, I have collaborated with colleagues to interview or survey approximately 150 sex workers in four main studies. These studies aimed to understand aspects of sex workers’ lives, such as victimisation, their trust in law enforcement, and drug use (see Molnar et al., 2021; Molnar & Aebi, 2022, 2023; Molnar & Ros, 2022; Ros & Molnar, 2022). We employed interviews, questionnaires, and participant non-systematic observations. Our research was conducted as part of our work with an NGO supporting sex workers in the canton of Vaud – located in the Frenchspeaking part of Switzerland – providing them with prophylactic materials, advice on preventing sexually transmitted infections, and assistance with administrative tasks and medical or legal support. This hands-on approach eliminated the need for intermediaries and allowed us frequent access to both street sex work sites and erotic massage parlours. My multicultural background—born in Romania, raised in Spain, and fluent in Romanian, Spanish, French, and English—has been beneficial, enhancing communication with many sex workers who are often foreigners. This has facilitated the establishment of trust and rapport over months, with an emphasis on confidentiality and anonymity, integral to my role as a social worker. These sex workers are often migrants in precarious situations with low education levels, turning to sex work due to a lack of other employment opportunities. They may live itinerantly between Switzerland and their home country—or another intermediary country, as is the case with Latin American citizens who often reside in Spain or Italy—where they typically have their families and close relationships. In Switzerland, they frequently lack a close network of family or friends, instead interacting primarily with work colleagues, clients, and managers. In this context, the role of social workers is crucial as they provide not only administrative assistance and prevention of sexually transmitted infections but also emotional support and confidentiality, becoming trusted confidants. While NGOs most often encounter female sex workers, specific programmes exist for male sex workers in some cantons such as Vaud, Zurich, and Geneva, though in other areas, the population assisted by NGOs primarily consists of cisgender or transgender women. Street-based Fieldwork In street settings, NGO staff operated a caravan offering sex workers refreshments, prophylactic supplies, and counselling. Operating from 9 PM to 1:30 AM, the night setting introduced its own complexities and risks. Always working in pairs, we welcomed many sex workers into the caravan; some stayed to enjoy a beverage with us, lingering for hours, while others merely grabbed a bag of condoms and left. Occasionally, an aggressive passerby would harass us, threaten us, or attempt to assault or rob a sex worker. In such cases, we would contact the police and hope for a swift response. We also accompanied sex workers to file a police complaint if they wished or even to the hospital. At times, the caravan was out of commission for months, and we had to maintain our presence outdoors with only a small car. These were particularly challenging times in terms of security, but fortunately, no serious incidents occurred. Nonetheless, I witnessed instances of violence from passersby toward

374  Handbook of sensitive research in the social sciences the sex workers. Sometimes, clients mistook us for sex workers and attempted to engage us, enquiring about our ‘rates.’ Among the sex workers assisted by NGOs, those working on the streets often find themselves in the most precarious situations—often young girls from diverse backgrounds with limited French proficiency and unfamiliarity with the Swiss system. Some are indeed victims of human trafficking and find themselves monitored by older women (the so-called ‘madams’), who ensure these young newcomers adhere to the unspoken rules of the trade. These older figures, whom I have come to know by sharing common spaces, pose significant risks to the younger workers’ safety. They exploit these girls, acting as managers and gatekeepers of their activities. Engaging with these young women often feels akin to performing in a play, where one must tread lightly to avoid being perceived as a threat by the madams—a social worker who might call the police, an undercover officer, or even a journalist. From the vantage point of a social intervenor, initiating conversations about mundane topics like daily routines, fashion, or food becomes a strategy to build trust. In moments of privacy, the simple yet profound question ‘How are you doing?’ is asked of these young and vulnerable sex workers. This cautious approach reflects the complex dynamics of attempting to offer support without jeopardising their safety or arousing suspicion from their overseers. However, approaching the study of human trafficking for exploitation as a ‘pracademic’ presents unique challenges. As a social worker, the primary goal is to maintain contact and rapport with the most vulnerable sex workers, a task complicated by the potential erosion of trust through probing questions about human trafficking. Additionally, the risks to both their safety and ours are constant concerns. Due to these reasons, I have not academically studied human trafficking as a phenomenon in depth, but my research has touched on related issues that also affect these sex workers, such as work-related victimisation from customers, colleagues, and passersby and the use of both legal and illegal drugs among sex workers. In all instances, safeguarding their well-being was paramount; ensuring that their ‘supervisor’ did not perceive our interactions as betrayals was a delicate balance. Efforts to maintain transparency included publicly advertising the study, discussing its themes openly, and even inviting the madam to participate. Accepting a perceived persona of naivety was a strategy employed to mitigate perceived threats. Starting my work in these contexts at 22 years old and now at 30, I believe my younger age initially helped in not being viewed as a potential threat. Erotic Massage Parlours Several times per week, a team of two social workers would visit erotic massage parlours across the canton to distribute prophylactic materials and information. Unlike street settings, these visits involved us going to their workplaces. At times, between four and six sex workers would be present in the same flat, complicating the research due to concerns about confidentiality. In such instances, we would either use a private room for interviews and questionnaires or propose meeting the sex workers for coffee at another time in a café. Alternatively, there were occasions when only one sex worker was present in a studio, which provided considerable privacy and was beneficial to conducting research. Most of the time, sex workers in these settings, especially during slow periods or when they were not working, were quite eager to engage in conversation due to boredom and loneliness. These interactions between participant and researcher, user and social worker, were often pleasant and meaningful. However, risks arose when customers or even managers of the erotic

Adventures in sex work: a pracademic’s perspective in Switzerland  375 salons appeared suddenly. In these situations, it was crucial for the researcher to depart gracefully and tactfully, ensuring the safety of the sex worker was not compromised. Male Sex Workers One year ago, I embarked on a project to investigate the victimisation of male sex workers, a notably under-represented group in research and often scarcely visible within NGO support structures (see some studies: Callander et al., 2021; Curtis & Boe, 2023). Recognising the unique challenges of engaging this community, I adopted a recruitment approach by leveraging the internet—a space where anonymity and accessibility could potentially lower the barriers to participation. Previously, I had coordinated a pilot project on male sex work, and we also used online platforms to access this population. I created a profile on a well-known website used by MSM (men who have sex with men) in Switzerland, carefully crafting my presence to be unmistakably academic. My introduction was clear and direct: ‘Hello, I am a researcher conducting a study on male sex work. My aim is to understand the perceptions and meanings individuals attribute to their work. I am seeking participants for interviews. Please note that my interest is purely academic, and I am not seeking personal encounters. If you are interested in learning more or participating in my study, feel free to contact me via email or WhatsApp. I welcome your questions and look forward to our discussion. Thank you, and have a great day!’ This message, sent to profiles of male sex workers, represented my initial attempt to bridge the gap between academia and this hard-to-reach population. Over the year, this method yielded interviews with five male sex workers and one client of male sex workers. However, the recruitment process faced several challenges. First, the response rate was low. Many messages went unanswered, which could indicate disinterest or distrust towards academic enquiries. Second, language barriers further complicated communication, as some did not speak Romanian, Spanish, French, or English. Third, the issue of compensation arose. Several sex workers requested payment for their participation, which presented a significant challenge as I am a young career researcher with limited funding. I considered compensating them from my own salary, but this was not feasible due to my contractual limitations and relatively low wages. Fourth, navigating some interactions marked by flirtatious advances was challenging and, at times, uncomfortable. Generally, I offered participants the choice of meeting either face-toface in a café or via a video call. Most of them—except for two—preferred to communicate via WhatsApp video, primarily because they were engaging in sex work as a part-time, supplementary activity and had busy schedules. A couple of participants did not want to meet in a café but rather in their own places in some remote villages. As a female researcher, concerns about personal safety and the intentions of potential participants necessitated caution, so I respectfully declined these invitations. Unfortunately, this resulted in the loss of these participants. However, most interactions remained professional, allowing for meaningful and insightful conversations. Outsider Insider I am currently undertaking exploratory research in the canton of Fribourg, aimed at identifying the need for victimisation prevention among sex workers. Although my role has shifted

376  Handbook of sensitive research in the social sciences from social worker to researcher, I am still engaged in participant observations through an NGO that supports sex workers in this region. Bi-weekly, I assist social workers with their daily activities, which include tasks such as distributing condoms, discussing health-related topics, and providing administrative support. This approach, in my opinion, is both feasible and ethical, particularly with respect to the NGO whose interests diverge significantly from academic pursuits. A researcher requiring constant oversight could burden the NGO staff; conversely, contributing practically to the organisation’s operations can benefit both the NGO and the research’s progress. One challenge encountered is addressing the perception of legitimacy among the sex workers who frequent the NGO, particularly when queried about my role. When I am asked if I am a new collaborator, and my response is ambivalent—‘not exactly, but I am offering assistance’—it reflects the delicate balance of adhering to the social workers’ rules without voting rights, while also fulfilling social work duties. Despite it not being a perfect balance, I believe this scenario is optimal for ensuring continued field presence, which is crucial for a profound comprehension of the community’s dynamics and unspoken rules. Planning to employ participatory action research, I intend to initiate a quasi-experimental study (detailed further in the conclusions and future actions section) and will organise reflection days with the sex workers to discuss their needs in violence prevention.

ETHICAL CONSIDERATIONS: SAME SIZE DOES NOT FIT ALL In the realm of research, particularly within stigmatised communities like sex workers, ethical considerations are paramount to ensure the safety, dignity, and empowerment of participants. The European Sex Workers’ Rights Alliance (ESWA) is preparing guidelines for conducting research with sex workers, emphasising the principles of do-no-harm, beneficence, informed consent, confidentiality, and participatory approaches. While some of these principles are universally applied in various contexts (see Diaz-Fernández et al., 2023), others must be adapted to address the unique circumstances of sex workers. Concerning the principle of beneficence, it is essential to ensure the physical and psychological safety of participants, staff, and communities. Research must be designed with robust security plans to mitigate risks, along with measures to minimise potential psychological harm through staff training and sensitive question vetting. This requires a thorough examination of the research’s implications: who it serves (an NGO, a university research institute, or an abolitionist group?), who it might harm, and who is best placed to conduct it (a novice researcher, a practitioner, or the sex workers themselves?). Collaboration with local or national organisations, such as NGOs or even syndicates of sex workers, while being mindful of power dynamics, might ensure that the research process is inclusive, accessible, and representative of diverse experiences within sex work. It is also crucial to consider whether conducting interviews at the workplaces of sex workers is advisable or if it would be preferable to invite them to NGO premises. If the latter option is chosen, one must reflect on whether this decision might prevent some sex workers, particularly the most precarious, from participating in the study and the implications this could have regarding the representation of the sample. Avoiding re-victimisation is imperative, and teams should have plans in place for detecting psychological distress in participants, such as a protocol for accompanying a sex worker to psychiatric emergency services, the police station, or the hospital, if they consent, or providing

Adventures in sex work: a pracademic’s perspective in Switzerland  377 them with the relevant information to proceed independently if they prefer. The ability to respond to disclosures and refer cases is another critical aspect. A functional referral system for violence survivors, encompassing multi-sectoral services, is a prerequisite for involving individuals in data collection related to violence. Furthermore, prior mapping of the legal environment and access to services is necessary to understand the risks associated with disclosures and how they may impact service access, especially for undocumented sex workers who have been victims of a crime. Participation should not be pressured, and if distress in a participant, researchers must ensure that questions are posed only as long as they serve a useful purpose for the community. Grounding research in the contextual realities of sex work allows findings to be used effectively for advocacy and policy influence. To collect, process, and analyse data, participants should be informed of the study’s objectives and goals through both an information sheet and oral communication by the researcher. This dual method of communication aims to ensure a clear and transparent understanding of the research’s intentions and implications while also allowing space for immediate questions and clarifications from the individuals involved. The information sheet should be translated into their mother tongues, and participants should explicitly and orally express their consent to participate. Given the stigma surrounding sex work, sex workers may be wary of signing forms that include their names. Cultural differences might also amplify this mistrust. Therefore, researchers should provide participants with a copy of the information sheet signed by the researcher, but no signature might be requested in return. This approach respects the confidentiality and comfort of participants while ensuring that necessary information is conveyed transparently and ethically. Compensating participants for their time and knowledge is often debated in other research contexts, but in the context of sex work and marginalised communities, it becomes an ethical obligation due to the precariousness in which these individuals live. It could be argued that it would be unethical to take time from someone who has limited resources to survive (Liamputtong, 2007, 2020). Compensation methods must be adapted to participants’ preferences and contexts, avoiding methods that could increase vulnerability, such as wire transfers. Feasible methods could include providing cash or vouchers. However, this becomes challenging when the vulnerability of sex workers overlaps with that of early-career researchers conducting studies without funding. Additionally, data protection measures must be robust, with careful consideration given to data coding, storage, and recording modes chosen by participants. Major concerns regarding the security of sensitive and personal research data include accessibility, data theft, data loss, and unsecured sharing. Personal data, such as phone numbers used for interactions with participants, should be meticulously managed. For instance, storing phone numbers on paper both at the researchers’ home and office, which should be secured, is advisable. Conversations and calls should be systematically deleted from phones to avoid complications in case of theft. Data management plans should, therefore, be carefully designed (see Table 25.1 for an example).​ Flexibility in data collection methods caters to participant preferences, ensuring their comfort and willingness to engage, such as their ability to choose between different interviewing methods like computer assisted personal interview (CAPI), computer assisted website interview (CAWI), paper and pencil personal interview (PAPI) and so on. This approach should be guided by action-based research methodologies like participatory action research (Connelly & Sanders, 2020; van der Meulen, 2011), which empower participants and communities by

Format

Excel/SPSS version

Handwritten

Handwritten

Data Type

Responses to a questionnaire

Participant contact phone numbers

Logbook

Face-to-face interactions between researcher (or potential collaborator) and participant or others (non-participating sex workers, social workers, police, victim support centre, etc.)

Face-to-face survey by researcher (or potential collaborator) and participant

Face-to-face survey by researcher (or potential collaborator) and participant

Collection Method

Approx. 100–200 hours

Approx 100 individuals

Approx. 100 x 4 = 400 responses

Quantity

Table 25.1  Data management plan example (short version)

Physical notebook, then transcribed into Word and transferred to qualitative analysis software NVIVO

Paper x2

Lime Survey

Platform

Researcher’s host institution + passwordprotected hardware (researcher’s office)

Researcher’s home office

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378  Handbook of sensitive research in the social sciences

Adventures in sex work: a pracademic’s perspective in Switzerland  379 involving them directly in the research process. In criminological research, organising workshops with sex workers and NGOs to define the object of study is a viable approach. Such gatherings allow for an enquiry into the priorities for safety-related issues that would be both desirable and feasible for the population. Peer interventions by sex workers can be beneficial, as they enable the sharing of knowledge about violence prevention within the community. Additionally, data analysis should be an iterative process that involves analysing preliminary data and returning to the population to discuss intermediate conclusions and findings, thereby involving participants in the research process. Ideally, employing sex workers as research fellows should be the standard practice when feasible and when individuals are interested. However, the absence of sex workers with a research background or the willingness to participate in a study should not impede their inclusion in the research. Rigour in research concerning marginalised communities may emphasise the importance of ethical practices over traditional research metrics. Returning information to participants and communities in an accessible language (sometimes requiring translation of documents) and acknowledging their contributions reinforces the ethical imperative of reciprocity, ensuring the research process is as beneficial to participants as it is to the academic community.

FEELINGS: RAW HONESTY Researching sex work can often be an engaging experience. These individuals, whom some abolitionist feminists view as perennial victims enduring life’s hardships, typically display immense resilience and good humour. They share anecdotes about their customers and their families and offer insights into customs and culture. At times, several street sex workers have even humorously suggested that my colleagues and I should join their profession due to the higher potential earnings compared to our social work salaries. However, sex work practitioner research also exposes us to challenging emotions experienced by both the sex workers and the researchers, or ‘pracademics’ (see Chapter 7 in this volume). There are periods when work is scarce, leaving sex workers frustrated by their financial obligations and limited options. The constraints faced by NGOs often mean they can do little to alleviate these struggles. Additionally, some sex workers experience psychological distress without access to appropriate mental health care due to factors like lack of insurance, language barriers or stigma around mental health services. Witnessing such precariousness and distress among individuals who become close to us is deeply affecting. The challenges are particularly acute when working with young women from outside the European Union who may have backgrounds in human trafficking. I recall a day when the cynical remarks of a young girl about Western obsessions with human rights brought me to tears, highlighting the profound frustrations and entrenched victimhood that prevent these workers from envisioning a life beyond their current circumstances. Another common emotion in this research is fear—fear of assault by unknown third parties, fear of inadvertently harming an individual or community, and fear of failing to report results accurately and sensitively. It is frustrating when, despite publishing findings in reputable journals, the impact on the actual lives of sex workers seems minimal. Metzenrath (1998, p.11) argues: ‘For far too long researchers have been using sex workers as guinea pigs without any benefit accruing to sex workers as the result of research. Essentially academic careers are made on our backs.’ This sentiment has been a constant throughout my career, driving me to

380  Handbook of sensitive research in the social sciences investigate topics of utility for the population and to devise interventions with the potential for significant impact. While the extent of my contributions is uncertain, my commitment to striving for meaningful change persists as I continue my research on sex work and other marginalised communities. Additionally, it is disheartening to present detailed results on preventing violence in sex work only to have an academic publicly dispute the legitimacy of sex work as a profession. Such interactions underscore the importance of interventions, regardless of differing perspectives on sex work. Saying goodbye to participants and returning to a comfortable home can evoke feelings of guilt, given the relative disparity in living conditions. There is also an inherent discomfort in using the precarious lives of sex workers to produce academic papers. This is why compensating participants generously, employing participatory research action methods, and sharing results in an accessible manner is crucial.

CONCLUSIONS AND FUTURE ACTIONS This chapter addresses my journey as a ‘pracademic’ in the field of sex work, viewed through my own lenses as both a researcher and a human being. Through these intervention and research experiences, I have gleaned invaluable insights into the lives and challenges faced by sex workers. The process underscored the importance of flexibility, ethical considerations, and the need for innovative approaches to engage marginalised communities in research. This journey has not only enriched my understanding but also highlighted the complexities of conducting sensitive research with dignity and respect. In that regard, I believe it is fundamental to conduct studies on three main topics using mixed research methods. First, I consider it paramount to document, via participatory action research, the state of victimisation of sex workers in Switzerland with representative samples constructed bottom-up via NGOs, social workers, and sex workers themselves. Second, little is known about the intervention methods that work in preventing sex workers’ victimisation. As stated before, I am currently working on a proposal for a quasi-experimental participatory action research design aimed at preventing violence in sex work. This project intends to understand and enhance safety in sex work through a three-step approach: a needs assessment through collaboration with key stakeholders (sex workers, NGOs, police, victim centres) utilising participant observation techniques and questionnaires; the design and implementation of preventive interventions (workshops, distribution of portable alarms, and so on) based on field needs; and the evaluation of the interventions’ effects in the short, medium, and long term. The main goal is to follow the trajectories of sex workers and assess whether interventions decrease their risk of victimisation, always involving the sex workers in the delimitation of the proposed interventions. This project is ongoing and will be submitted to the Swiss National Research Council for funding. Another research direction involves not only sex workers but also the general population's attitudes towards sex work. In this context, we are collaborating with a master’s student, Ms Clarence Burrati, to replicate a study originally conducted by Sprankle et al. (2018). In their experimental research in the United States, Sprankle et al. (2018) surveyed 197 undergraduate students about their perceptions of sexual assault survivors. They provided half of the participants with news articles describing a sexual assault where the victim was a prostitute,

Adventures in sex work: a pracademic’s perspective in Switzerland  381 while the other half received articles in which the victim was not identified as such. Their findings indicated that the students who read about the assault on a sex worker demonstrated less empathy and more victim-blaming attitudes compared to the other group. This aspect of the study is particularly significant as it addresses violence against sex workers. We are currently conducting a similar study using a sample of Swiss university students to explore whether a legalised environment influences victim-blaming attitudes towards sex workers. This research illustrates how the study of sex work can extend to samples from the general population and how the vignette experimental method can provide valuable and insightful results. To sum up, my research and intervention experiences underscored the importance of adopting flexible and innovative approaches in research to address the needs of sex workers effectively and to engage with them in a manner that respects their dignity and agency (see Chapter 1). In Switzerland, the legal status of sex work provides a unique backdrop for research, allowing for detailed studies within a regulated framework. This setting facilitated a more open and trusting engagement with participants, which was crucial for gathering nuanced insights. This narrative, while specific to my experiences in Switzerland, serves as a basis for further discussion and exploration in other contexts where sex work is regulated differently. By sharing these experiences, I hope to encourage other researchers, particularly those in the early stages of their careers, to appreciate the complex interplay of factors that shape this field of study.

DISCLAIMER The author, not being a native English speaker, used ChatGPTl for the editing and proofreading of this chapter. All ideas and content are her own.

REFERENCES Azhar, S., Dasgupta, S., Sinha, S., & Karandikar, S. (2020). Diversity in sex work in India : Challenging stereotypes regarding sex workers. Sexuality & Culture, 24(6), 1774–1797. https://doi​.org​/10​.1007​/ s12119​- 020​- 09719​-3. Callander, D., Meunier, É., DeVeau, R., Grov, C., Donovan, B., Minichiello, V., Kim, J., & Duncan, D. (2021). Investigating the effects of COVID-19 on global male sex work populations : A longitudinal study of digital data. Sexually Transmitted Infections, 97(2), 93–98. https://doi​.org​/10​.1136​/sextrans​ -2020​- 054550. Chimienti, M. & Bugnon, G. (2018). Switzerland. In S. Jahnsen & H. Wagenaar (eds), Assessing prostitution policies in Europe. Routledge. Cimino, A. N. (2021). Uncovering intentions to exit prostitution: Findings from a qualitative study. In A. Horning (ed.), Quitting the sex trade: Why and how pimps and sex workers leave the business. Routledge. Connelly, L. & Sanders, T. (2020). Disrupting the boundaries of the academe: Co-creating knowledge and sex work ‘academic-activism’. In S. Walklate, K. Fitz-Gibbon, J. Maher, & J. McCulloch (eds), The Emerald Handbook of feminism, criminology and social change (pp.203–218). Leeds: Emerald Publishing Limited. https://doi​.org​/10​.1108​/978​-1​-78769​-955​-720201018. Curtis, M. G. & Boe, J. L. (2023). The lived experiences of male sex workers: A global qualitative metasynthesis. Sexes, 4(2), 2. https://doi​.org​/10​.3390​/sexes4020016. Danna, D. (2014). Report on prostitution laws in the European Union. Universitа degli Studi di Milano, accessed 29 September 2024 at http://las​trad​aint​erna​tional​.org​/ lsidocs​/3048​-EU​-prostitution​-laws​ .pdf.

382  Handbook of sensitive research in the social sciences Deering, K. N., Amin, A., Shoveller, J., Nesbitt, A., Garcia-Moreno, C., Duff, P., Argento, E., & Shannon, K. (2014). A systematic review of the correlates of violence against sex workers. American Journal of Public Health, 104(5), e42–e54. https://doi​.org​/10​.2105​/AJPH​.2014​.301909. Diaz-Fernández, A., del-Real C., & Molnar, L. (2023) Fieldwork experiences in criminology and security studies. Springer. European Sex Workers’ Rights Alliance. (2024, 23 January). European Sex Workers’ Rights Alliance, accessed 29 September 2024 at https://www​.eswalliance​.org/. Földhàzi, À. (2009). Activités prostitutionnelles et gestion des violences : « les risques du métier ». Genre, sexualité & société, 2. https://doi​.org​/10​.4000​/gss​.1020. Gajic-Veljanoski, O. & Stewart, D. E. (2007). Women trafficked into prostitution: Determinants, human rights and health needs. Transcultural Psychiatry, 44(3), 338–358. https://doi​.org​/10​.1177​ /1363461507081635. Graça, M. (2016). Participatory action research with sex workers and an outreach team: A co-authored case study. Conference: Research Day – University of Aveiro, Portugal. https://doi​.org​/10​.13140​/ RG​ .2​.1​.3688​.4080. Harcourt, C. & Donovan, B. (2005). The many faces of sex work. Sexually Transmitted Infections, 81(3), 201–206. https://doi​.org​/10​.1136​/sti​.2004​.012468. Jahnsen, S. (2019). Assessing prostitution policies in Europe (Reprint edition). Routledge. Jenkins, J. P. (2020). Prostitution | Definition, history, & facts. Encyclopedia Britannica, accessed 29 September 2024 at https://www​.britannica​.com​/topic​/prostitution. Jobe, A., Stockdale, K., & O’Neill, M. (2022). Stigma and service provision for women selling sex. Findings from community-based participatory research. Ethics and Social Welfare, 16(2), 112–128. https://doi​.org​/10​.1080​/17496535​.2021​.2018476. Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. London: Sage. Liamputtong, P. (2020). Qualitative research methods (5th ed.). Melbourne: Oxford University Press. Metzenrath, S. (1998). In touch with the needs of sex workers. Research for Sex Work (R4SW 1): Peer Education, 1, 11. Molnar, L. (2021). Previst Project: The passage from the “object paradigm”’ to the “choice paradigm”. A Swiss campaign within the general population for crime prevention in sex work. In E. Casado Patricio, M. Izco Rincon, & A. Paez Merida (eds), Forjando nuevos caminos: Investigaciones noveles en Criminología (pp.130–136). Valencia: Tirant lo Blanch, accessed 29 September 2024 at https://serval​.unil​.ch ​/notice​/serval​:BIB​_4784009FECE6. Molnar, L. (2023). Conducting criminological practitioner research with sex workers in Switzerland. In A. M. Díaz-Fernández, C. Del-Real, & L. Molnar (eds), Fieldwork experiences in criminology and security studies: Methods, ethics, and emotions (pp.157–172). Springer International Publishing. https://doi​.org​/10​.1007​/978​-3​- 031​- 41574​- 6​_9. Molnar, L. & Aebi, M. F. (2022). Alone against the danger: A study of the routine precautions taken by voluntary sex workers to avoid victimisation. Crime Science, 11(1), 3. https://doi​.org​/10​.1186​/s40163​ -022​- 00166​-z. Molnar, L. & Aebi, M. F. (2023). Risky business: Voluntary sex workers as suitable victims of workrelated crimes in a legalised prostitution environment. Crime Prevention and Community Safety, 25, 204–222. https://doi​.org​/10​.1057​/s41300​- 023​- 00173​-5. Molnar, L., Biscontin, G., & Pongelli, S. (2021). La consommation de produits psychoactifs et de médicaments chez les personnes travailleuses du sexe dans le canton de Vaud (Suisse). Une étude exploratoire. Revue Internationale de Criminologie et de Police Technique et Scientifique, 72, 23–42. Molnar, L. & Ros, J. (2022). Experiences of sex workers in times of pandemic: From lawful to riskproducing environments in Switzerland. International Journal of Gender, Sexuality and Law, 2(1). https://doi​.org​/10​.19164​/ijgsl​.v2i1​.1260. Nencel, L. (2017). Epistemologically privileging the sex worker: Uncovering the rehearsed and presumed in sex work studies. In M. Spanger & M.-L. Skilbrei (eds), Prostitution research in context: Methodology, representation and power. Routledge. Oliveira, A. (2018). An action research project with sex worker peer educators in Lisbon, Portugal: Collaboration as a key issue for empowerment. In S. Dewey, I. Crowhurst & C. Izugbara (eds), Routledge international handbook of sex industry research. Routledge.

Adventures in sex work: a pracademic’s perspective in Switzerland  383 O’Neill, M. (2010). Cultural criminology and sex work: Resisting regulation through radical democracy and participatory action research (PAR). Journal of Law and Society, 37(1), 210–232. Ros, J. (2018). La prévention auprès des travailleuses du sexe. REISO, 3 , accessed 29 September 2024 at https://www​.reiso​.org​/articles​/themes​/precarite​/3335​-la​-prevention​-aupres​-des​-travailleuses​ -du​-sexe. Ros, J. (2021). Les conditions de travail du sexe. Pour une approche environnementale des risques. Sciences & Actions Sociales, 15, 133–153. https://doi​.org​/10​.3917​/sas​.015​.0133. Ros, J. & Molnar, L. (2022). Experiences of sex workers in times of pandemic: From lawful to riskproducing environments in Switzerland. International Journal of Gender, Sexuality and Law, 2(1). https://doi​.org​/10​.19164​/ijgsl​.v2i1​.1260. Sanders, T. & Campbell, R. (2007). Designing out vulnerability, building in respect: Violence, safety and sex work policy. The British Journal of Sociology, 58(1), 1–19. https://doi​.org​/10​.1111​/j​.1468​ -4446​.2007​.00136​.x. Sprankle, E., Bloomquist, K., Butcher, C., Gleason, N., & Schaefer, Z. (2018). The role of sex work stigma in victim blaming and empathy of sexual assault survivors. Sexuality Research and Social Policy, 15(3), 242–248. https://doi​.org​/10​.1007​/s13178​- 017​- 0282​- 0. van der Meulen, E. (2011). Action research with sex workers: Dismantling barriers and building bridges. Action Research, 9(4), 370–384. https://doi​.org​/10​.1177​/1476750311409767.

26. Conducting research with adolescents experiencing marginalisation and vulnerability Jessica A. Heerde, Stephanie Begun, Lucas Calais Ferreira, Cristyn Davies, Marie Habito, Kristi Morrison, Lindsay Pearce, Farnaz Sabet, Amy M. Salazar, Jennifer A. Bailey and Susan M. Sawyer

INTRODUCTION The developmental period of adolescence encompasses rapid growth and social transitions in which the assets and capabilities that underpin future individual and population-level health and behaviour are established (Sawyer et al., 2018). The terms adolescent, youth, and young people are often used interchangeably in the literature, without clear operational definitions. In this chapter, we use the extended definition of adolescence spanning from ten to 24 years, which is increasingly applied in international contexts to frame social policies and service systems (Sawyer et al., 2018). Investments during this critical period of development can reverse early-life deficits and support healthier trajectories across the life course and into future generations (Patton et al., 2018; Sheehan et al., 2017). Globally, many adolescents thrive and achieve good health and wellbeing, with high levels of life expectancy (Patton et al., 2018). However, those who face marginalisation and vulnerability during this period experience numerous health and social inequities that significantly impact their growth and development, as well as their future life chances. Experiences of marginalisation and vulnerability can arise from a variety of contexts. Some of these contexts are common across groups of adolescents (for example, a greater likelihood of exposure to adverse childhood events and trauma, poverty and disempowerment), and some are unique (for example, the experience of government care, early pregnancy and parenting). For many adolescents, these contexts intersect. Research with adolescents experiencing marginalisation is relatively neglected (Liamputtong, 2007). In part, this reflects the multiple challenges of engaging them in research processes, which are more resource-intensive due to the need to flexibly adapt research methods to their needs. It also reflects various structural barriers imposed by social systems (for example, child protection or justice systems) and research ethics governance. Yet, research to understand the nature and impact of marginalisation and vulnerability, including that which will inform prevention strategies, is needed to frame greater policy attention to the needs of these adolescents. The chapter is organised into six sections, which build on each other. We draw on our collective experience of conducting research with adolescents in government care, those with lived experience of homelessness, adolescents in contact with the justice system, those with diverse gender identities and sexualities, and adolescents who are pregnant or parenting. The first section discusses the ways in which marginalisation and vulnerability have been conceptualised. 384

Research with adolescents experiencing marginalisation and vulnerability  385 It also considers how adopting an intersectional approach can inform understanding of marginalisation and vulnerability. Next, the focus is on the health burden of marginalisation and vulnerability. The third section summarises strategies for engaging and retaining adolescents experiencing marginalisation and vulnerability in research. We consider ethical challenges, participant recruitment, informed consent, and data collection. We also discuss safeguarding the wellbeing of research participants and remuneration. The fourth section considers administrative data collection as a new approach to research with adolescents experiencing marginalisation. We then discuss how adolescents experiencing marginalisation and vulnerability can be engaged as researchers, and in research translation and advocacy efforts. The chapter concludes by considering practices for nurturing researchers’ wellbeing.

CONCEPTUALISING MARGINALISATION, VULNERABILITY AND INTERSECTIONALITY In discussing research strategies involving adolescents experiencing marginalisation and vulnerability, we must first address how these terms are conceptualised. The terms ‘marginalisation’ and ‘vulnerability’ have been used widely across different fields of academic discourse, by health professionals and within social sectors. In recent decades, there has been a shift that recognises the problematic nature of these terms when they are used to label individuals and groups, with movement towards considering those circumstances or conditions that influence the risk for marginalisation and vulnerability (Munari et al., 2021). In this chapter, we use a person-centred, identity-first approach of placing adolescents before their experiences (such as, homelessness, justice involvement) or conditions (such as disability, diverse genders and sexualities1) (Munari et al., 2021). Thus, instead of referring to ‘homeless adolescents’, we use the language of ‘adolescents who experience homelessness’. The social determinants of health are a framework commonly applied when discussing the impact of marginalisation and vulnerability on health due to its value in highlighting various social factors that influence the health of populations (Liamputtong, 2019). In particular, this framework considers the social and economic conditions in which people are born, grow, work, and live that influence their health (Marmot, 2005). This includes the impact of social policies and systems, social norms, and living conditions (Marmot, 2005). Marginalisation Marginalisation, considered both a process and an experience, occurs when adolescents are excluded from mainstream society (Robards et al., 2020). It can result from many factors, including poverty, discrimination, and exclusion (due to homelessness status, for instance). It can also be driven by structural disadvantage and institutional discrimination, which can be features of health settings (Davies et al., 2021). Important differences exist in the factors that contribute to marginalisation for adolescents compared to adults. For adolescents, marginalisation can be triggered by social systems (such as welfare policies), involvement with institutional settings (government care,2 contact with the justice system3, for instance), individual circumstances (such as homelessness, diverse genders and sexualities, pregnancy or parenting), economic conditions (poverty, for example) and socio-environmental risks (such as early school leaving). Adolescents can be exposed to multiple compounding social

386  Handbook of sensitive research in the social sciences determinants. For example, adolescents with diverse genders and sexualities face discrimination and marginalisation that can be driven by heteronormativity—that is, within everyday interactions, practices, and policies that assume and construct individuals as heterosexual (Davies et al., 2021). Structural and institutional discrimination may be subtle or overt, such as non-inclusive intake forms that assume a person is cisgender or heterosexual (Davies et al., 2021), encountering judgement for experiencing homelessness (Heerde & Pallotta-Chiarolli, 2020), or the exclusion of adolescents in detention from health insurance subsidies (Kinner, 2019). Pathways into marginalisation for adolescents are multi-directional and intersectional, with a dynamic pattern of risks that can both change and persist over time. Vulnerability As a result of experiencing marginalisation, adolescents may also experience vulnerability, described as a risk for harm or poor outcomes, driven by environmental, cultural, socioeconomic and political factors (Munari et al., 2021) and minority stress. Minority stress arises from the social, psychological, and structural discrimination associated with belonging to a stigmatised minority group (Davies et al., 2021; Meyer, 2003). For example, adolescents with diverse genders and sexualities may conceal their identities, orientations and practices due to fear of discrimination, homophobia, transphobia, or rejection (Davies et al., 2021; Meyer, 2003). In healthcare settings, the impact of minority stress may result in internalised, enacted, or anticipated stigma for adolescents, which can subsequently impact the quality of care received (Davies et al., 2021; Heerde & Pallotta-Chiarolli, 2020). The impact of vulnerability can be profound, placing adolescents at increased risk of complex physical, mental health, developmental, and psychosocial problems that are likely to extend across the life course. For instance, vulnerability resulting from childhood trauma can stem from separation from the family unit earlier than usually occurs and without the usual transitions in social, financial, and other responsibilities that are commonly experienced within families (Price-Robertson et al., 2014; Sawyer et al., 2018). Subsequent vulnerability may arise from transitions across multiple government care placements (as well as an abrupt end to care at an earlier age than peers not in government care), disrupted educational pathways or early school leaving, pregnancy, or disrupted opportunities to engage in normative social experiences (such as playing in sports teams, having the experience of sleepovers with friends, or getting a driving licence) (Mann-Feder & Goyette, 2019; Stein & Munro, 2008). The impact of vulnerability can continue into adulthood through social exclusion (Ajayi et al., 2023), reduced employment opportunities, homelessness and housing instability, contact with the justice system and incarceration, and poor health (see Heerde et al., 2023; Mann-Feder & Goyette, 2019; Stein & Munro, 2008). Intersectionality Research examining adolescents’ experiences of marginalisation and vulnerability can benefit from applying an intersectional lens (Crenshaw, 1989). Making the complex aspects of intersectionality more visible for these adolescents is imperative as many will have membership in overlapping marginalised groups. Applying an intersectional approach can help in understanding how different experiences may contribute to subsequent experiences of marginalisation and vulnerability and, consequently, how these experiences heighten the risk for

Research with adolescents experiencing marginalisation and vulnerability  387 poor outcomes (see Chapters 8 & 29). For example, across the groups of adolescents we refer to in this chapter, experiences of marginalisation are often triggered by family disruption, abuse, or neglect. Adolescents with experience in government care, those who have a history of homelessness, and those in contact with the justice system frequently report having experienced physical, emotional, or sexual violence, abuse or exploitation, or neglect within their family of origin (Heerde et al., 2023; Narendorf et al., 2020; Price-Robertson et al., 2014). Similarly, adolescents with lived experience of government care may also experience homelessness and have contact with the justice system (Heerde & Pallotta-Chiarolli, 2020) while adolescents with diverse genders and sexualities also report lived experience of government care (Travers et al., 2012). Pregnant and parenting adolescents experience stigma at the intersections of multiple marginalised social identities (such as coming from a poor family, having no/low levels of education, being a single mother, belonging to a particular ethnic group, housing challenges) (Chambers & Erausquin, 2015). Employing an intersectional lens recognises that adolescents may have multiple marginalised identities, shaped by compounding social determinants and cultural, socio-economic and political factors, which can result in poorer health outcomes than groups with a single marginalised identity (Davies et al., 2021; see also Chapter 1).

THE HEALTH BURDEN OF MARGINALISATION AND VULNERABILITY Adolescents experiencing marginalisation are a heterogeneous group with considerable health vulnerabilities. They face major life challenges and adversities that are partly due to their young age but also strongly influenced by the circumstances that contributed to their marginalisation, the experience of marginalisation itself, and its profound impact on health. Adolescents who experience marginalisation and vulnerability report complex health problems and less access to health services (Munari et al., 2021; Robards et al., 2020). They are also more likely to experience socio-economic disadvantage (Narendorf et al., 2020) and barriers to accessing culturally safe healthcare,4 making access to healthcare challenging. Navigating these barriers is considered pivotal to managing unmet health needs and reducing health inequities (Calais-Ferreira et al., 2022; Davies et al., 2021; Narendorf et al., 2020). The experience of marginalisation creates personal, health, and social vulnerabilities for adolescents. For many, experiencing marginalisation entails long periods of stress that amplify the life challenges and adversities they have already experienced while also exposing them to new traumas. Many adolescents who live on the margins of society experience challenges in protecting themselves due to the absence of the safety and security of a family home or lack of support from friends, family, or other trusted adults. For example, adolescents with lived experience of homelessness report being tired, hungry, malnourished, and exposed to the impacts of extreme temperatures and changes in weather conditions (Heerde & PallottaChiarolli, 2020). They are vulnerable to violence, exploitation, crime, and potential engagement in health-compromising behaviours; many of these incidents are commonly accepted as normal when they occur, driving later feelings of shame and stigma (Heerde & Patton, 2020). In the same way, adolescents who are pregnant or parenting also face stigma (Ellis-Sloan, 2014) and discrimination (Conn et al., 2018). This stigma can occur within social and institutional settings, as well as within peer groups of young parents (Jones et al., 2019) and indeed

388  Handbook of sensitive research in the social sciences within health services (Banke-Thomas et al., 2017). This is often the case for adolescents who become pregnant outside of marriage or union, as this places them at odds with sociocultural norms that disapprove of sexual behaviour outside of marriage (Svanemyr, 2020). Many adolescents have or will develop health conditions because of their marginalisation (Heerde et al., 2023). These health conditions are often complex and can be interrelated. For example, the association between homelessness and health is bidirectional; homelessness is both a contributor to, and a consequence of, poor health (Heerde et al., 2023). For adolescents experiencing marginalisation, their capacity to access healthcare is often compromised. This includes adolescents with lived experience of government care who report unmet health needs due to limited access to health services while in care (Mann-Feder & Goyette, 2019; Stein & Munro, 2008). Adolescents in contact with the justice system are less likely to receive adequate quality and continuity of primary healthcare after release from incarceration than adults, even when affected by physical and psychological comorbidities, which can compound health inequalities (Calais-Ferreira et al., 2022). They have a considerably lower life expectancy than their non-justice-involved peers due to preventable conditions (Calais-Ferreira et al., 2023). As a group, adolescents with diverse genders and sexualities are less likely to access health services and engage with healthcare professionals (Davies et al., 2021) as are adolescents with lived experience of homelessness (Heerde & Pallotta-Chiarolli, 2020). So too, adolescents who become pregnant and give birth face elevated risks of adverse maternal health outcomes, including maternal and neonatal mortality (Neal et al., 2016).

ENGAGING AND RETAINING ADOLESCENTS EXPERIENCING MARGINALISATION AND VULNERABILITY IN RESEARCH The engagement and retention of study participants is a common challenge in any research (Capaldi & Patterson, 1987) but it is particularly challenging with adolescents experiencing marginalisation and vulnerability (Bonevski et al., 2014). Some of these challenges relate to difficulties in obtaining ethics governance protocols, identifying and recruiting participants, obtaining informed consent, data collection procedures, safeguarding the wellbeing of research participants, and the appropriateness of remuneration for research participation (Garvey et al., 2018). The cumulative effects of trauma and the complexity of life for adolescents experiencing marginalisation make it more difficult to sample, engage, and trace participants, either in observational or traditional cohort studies (Heerde & Patton, 2020). This results in them being under-represented in research. Yet, the impacts resulting from adolescents’ experiences of marginalisation and associated vulnerabilities mean that government and social systems globally, regionally, and nationally should have access to evidence-based solutions to better meet the needs of these adolescents, including improved health outcomes. Navigating Research Ethics Committees The complexity of circumstances faced by adolescents experiencing marginalisation, in addition to their age, means that they are by their very nature a ‘vulnerable’ group. Consequently, their research participation ought to be carefully reviewed within ethics governance protocols. While it is beyond the scope of this chapter to address in detail, considerations for conducting research with these adolescents must be informed by legal, ethical, and human rights

Research with adolescents experiencing marginalisation and vulnerability  389 frameworks. The intention of applying these frameworks is to reduce potential harm to both adolescents and researchers (Mathews, 2022). However, it is also appreciated that inadvertently, the stringent requirements by research ethics committees can result in many challenges that ultimately reduce the likelihood that research will focus on these adolescents. Research ethics committees have classified many of our projects as being ‘high risk’ due to the nature of the research sample and topics covered, rather than the nature of the project activities. For example, rigorous ethical oversights may fail to appreciate the contexts that make recruitment, informed consent and assent, and provision of remuneration more challenging for these groups (as discussed within this chapter) and may inadvertently pose barriers to research projects. As one example, in the United States, many child welfare systems have their own research ethics boards/committees that must approve the conduct of a study, even when a university research ethics committee has granted approval. Written support from a child welfare system administrator is usually required for child welfare system ethics approval. Following this, the next step is identifying adolescents who are eligible to participate in the study. In the US, the most efficient means to do this is to request a list of adolescents who meet the study criteria directly from the child welfare system. However, in many cases, such lists are not supplied even if the study has been approved by that system’s research ethics committee. In this case, additional recruitment methods must be employed, such as drawing on the researchers’ established relationships with those working in the child welfare system to identify eligible adolescents. These processes must also receive ethics approval, so ensuring that they are included in the initial ethics application will promote the efficiency of project approval. While obviating barriers to systematic recruitment, one result can be the recruitment of less representative samples. Identifying and Recruiting Participants Thoughtful approaches to sampling are needed to identify and recruit adolescents experiencing marginalisation and vulnerability in research. Initial planning must establish the feasibility of the proposed research as well as consider how to make the research process easy and accessible for study participants. For instance, engaging in research with adolescents in contact with the justice system can be fraught with difficulties and challenges. Research with these adolescents is impossible without the support of justice systems themselves (like child welfare systems, justice systems can also be hesitant to participate in research). As a result, research involving this group must be carefully planned and must adapt to the many structural and systemic challenges imposed by justice systems. Another practical challenge of research with adolescents experiencing marginalisation is identifying where they are located at any time. For example, adolescents with lived experience of government care, homelessness, or justice-involvement are highly transient, commonly do not have stable residency, and have low trust in adults in positions of authority (including researchers). In many ways, staff working in welfare and community-based organisations that work directly with these adolescents act as ‘gatekeepers’ (Ensign, 2003). They provide permission to conduct research in their organisation. They also facilitate and monitor access to adolescents, as they have developed a level of trust with them. Developing these foundational relationships can result in research approaches that avoid contributing to the stigmatisation, discrimination, and marginalisation that is already experienced by many adolescents (Bonevski et al., 2014). Across our research projects, staff at these organisations

390  Handbook of sensitive research in the social sciences have informally introduced our projects to adolescents. Following this, we have spent time visiting services and informally engaging with adolescents, accompanied by service staff. Introductions to the research team from a trusted staff member (such as a case manager, health professional, or social worker) have helped to establish credibility and trust with both the research and the adolescents themselves. These actions have always been guided by input from staff and were designed to honour adolescents’ low levels of trust and various vulnerabilities, with the intention of demonstrating a willingness to build trust, safety, and familiarity. Obtaining Informed Consent Adolescents must actively agree to participate in research through the process of informed consent. This process begins with clarifying (a) the legal guardian of the adolescent who can provide informed consent or (b) whether adolescents can provide informed consent in the absence of a parent/guardian. International research ethics guidelines vary on who provides consent for adolescents to participate in research and the age at which adolescents can provide their informed consent (Mathews, 2022). As one example, in the case of adolescents with lived experience of government care in the United States, it is the child welfare system that determines who can give consent for adolescents’ research participation. This varies widely by state and may include an adolescents’ caseworker, foster parent, biological parent, or a child welfare system administrator. In some cases, consent may be required from multiple entities. The process of informed consent is similarly complicated for adolescents in contact with the justice system because legal guardianship is not always straightforward. For example, in Australia, the state is considered the legal guardian of an adolescent detained in the youth justice system, even if they have a legal guardian (such as a parent) in the community. Due to high rates of child protection involvement among adolescents in contact with the justice system, those in the community may not have an identified guardian to provide legal consent for research participation. In another Australian example, most of the adolescents with lived experience of homelessness we have worked with have been unaccompanied by a parent or guardian and not under the guardianship of the state. In Australia, adolescents who are not legally considered adults due to their age are unable to provide consent to participate in research. For those adolescents under 18 years of age (and not legally considered adults), we have drawn on the legal concept of a mature minor or emancipated minor for consent (Sanci et al., 2004), whereby adolescents can provide informed consent in the absence of a parent/guardian if the researcher can be confident that they fully comprehend the nature, consequences, and risks of research participation. In cases where the legal guardian of the adolescent has provided consent, consideration must then be given to how adolescents also provide their own consent (termed assent) to participate in the research. Adolescents experiencing marginalisation and vulnerability are often highly mobile, and the contact information the child welfare or justice systems have for them may be out of date. Furthermore, as many of these adolescents may not have reliable access to cellular phones, it can be hard to reach them directly. In these cases, again, strong relationships with welfare and community-based organisations that work directly with these adolescents are paramount. Next, care must be taken in assessing adolescents’ capacity to provide assent (Ensign, 2003; Heerde & Pallotta-Chiarolli, 2020). This begins with establishing a safe

Research with adolescents experiencing marginalisation and vulnerability  391 space (and location) where discussions about research participation can be conducted in privacy and confidence. It includes informally engaging with adolescents to ensure they are not emotionally overwhelmed, substance-affected, or unwell at the time of providing assent. We explain issues of confidentiality and always offer to maintain anonymity using pseudonyms (for example, in qualitative studies). It is also likely that some adolescents will struggle with literacy, leading to difficulties reading ethics and consent documents. In our work with adolescents experiencing homelessness, we read aloud the relevant ethics and consent documents to circumvent any problems with literacy and allow ample time for adolescents to ask questions about the research and interview process, prior to their providing assent. The use of augmentative (such as sign language) and alternative communication devices (such as text-to-speech technologies, communication devices with voice output) could also be considered to support adolescents who have difficulties hearing and/or communicating using speech (Baxter et al., 2012). Data Collection Procedures Obtaining insight into the complexity of adolescents’ lives requires forming an understanding of how marginalisation and vulnerability intersect for them. Giving careful attention to the appropriateness and inclusiveness of interview questions or survey items relevant to the group of adolescents involved in the study is warranted. For example, questions about diverse genders and sexualities allow participants to select multiple identities (Ruberg & Ruelos, 2020). Equally, questions regarding family of origin, family relationships, and childhood family experiences can be psychologically and emotionally demanding for adolescents with lived experience of homelessness, government care, and justice involvement, where family breakdown may have precipitated these events. There is a strong case for broadening the scope of demographic questions around personal and socio-economic contexts to consider intersectionality more comprehensively in universal or school-based surveys tracking adolescent health and development to understand factors that lead to higher risk of marginalisation. For example, just as survey items that enquire about diverse genders and sexualities are increasingly being included in routine surveys, so too the inclusion of items that enquire about experiences of government care, homelessness, justice involvement, and pregnancy would bring much-needed visibility to these groups. A practical aspect of data collection is the method of administration. In-depth face-toface interviews are commonly used with adolescents experiencing marginalisation, allowing for open conversations and a greater depth of data gathered about complex life experiences. Interviewer- and web-based questionnaires or surveys are also valid options and, in some cases, may be a safer option for adolescents. For example, adolescents in contact with the justice system may feel safer and more comfortable completing a survey than participating in an interview in the presence of security staff. They may also be safer doing this. Web-based surveys require access to stable internet and a computer or device, so providing alternative modes of survey completion (in-person or paper, for example) may be helpful for adolescents who do not have reliable access to the internet or a device. Again, some adolescents will struggle with literacy and may struggle to complete a survey, so providing alternative and accessible communication methods—for instance, the use of headphones with audio—is needed to address potential literacy barriers.

392  Handbook of sensitive research in the social sciences It is difficult to engage adolescents experiencing marginalisation in mid- to long-term projects, which often leads to them being labelled as ‘hard to reach’ (Liamputtong, 2007; Bonevski et al., 2014; see Chapter 1). As one example, Montanaro and colleagues (2015) reported that research staff made nearly twice as many phone calls to adolescents in contact with the justice system over the course of the study compared to non-justice-involved (school-based) adolescents. There is a strong case for furthering strategies to engage adolescents experiencing marginalisation as they are likely to experience greater risks and will be less represented in the research findings. For example, adolescents in contact with the justice system are at high risk of homelessness, yet few will be released into the community with known addresses, telephone numbers and other personal contact details. This is a challenge as obtaining and maintaining accurate, detailed, and thorough personal contact information and records of contact attempts are essential to engaging and maintaining contact with study participants over time (Abshire et al., 2017). Where adolescents have been recruited through a social welfare service, keeping accurate details of the service, adolescents referred to the project from this service, and the staff member(s) researchers liaised with is vital, especially in the event of staff turnover during the project period. Requesting detailed contact information for the adolescent (including the service they were recruited from) as well as contact information for several close relatives or friends (having checked that the adolescent is comfortable providing this information) is a strategy we have found to be effective. As described by Seed and colleagues (2009) in their study with young mothers, nearly three-quarters of participants’ phones became disconnected over the study period. In addition to detailed contact information, recording the number and frequency of contact attempts, varying modes of contact (phone, text, email, mail, or inperson visits) and contacting participants at varied times of the day or days of the week can be useful strategies for maintaining contact with adolescents experiencing vulnerability and marginalisation (Meyers et al., 2003). Safeguarding the Wellbeing of Research Participants As researchers, we have a responsibility to ensure the wellbeing of research participants and manage any potential risks to their safety and wellbeing that may be triggered by participation in the research process. This begins at project conceptualisation and continues long after project completion via the reporting and publication of research findings. Of utmost importance in our research practices is managing place and space, maintaining confidentiality and anonymity, and reducing power imbalances. The importance of the place and space in which data is collected cannot be underestimated. In qualitative research, this is important because we want to create a two-way conversation to understand adolescents’ experiences of marginalisation, and often to hear about their life histories. To develop this understanding, adolescents must feel safe to recount and detail their experiences. Most often, this means interviews or interventions are conducted where participants are located or meeting them at a location of their choice (Meyers et al., 2003). But for some adolescents, such as those in contact with the justice system, data collection usually occurs in detention settings and in the presence of a third person. This third person is normally a staff member rather than someone chosen by adolescents to attend for moral support. The explicit and implicit power dimensions of this situation must be considered well in advance of data collection. It is possible that adolescents’ recounting of their experiences in detention may raise contentious issues with staff. It is our responsibility to understand these

Research with adolescents experiencing marginalisation and vulnerability  393 contexts, and as much as possible, to ensure we prevent or mitigate the occurrence of these situations, both at the study design stage and when devising interview questions. Building rapport with adolescents includes establishing a comfortable space. This can include setting aside ample time for data collection, choosing a private room in a public space, allowing adolescents to choose where they would like to sit in the room, gaining permission for audio recording, and allowing adolescents to take breaks where they need to. Maintaining participants’ confidentiality (and explaining the limitations to this) is an integral part of creating a psychologically safe environment and for opening and building a dialogue with adolescents. Across our work, we explain issues of confidentiality and offer to maintain anonymity using pseudonyms (for example, in qualitative studies). We invite adolescents to choose their own pseudonym. We are aware there are situations where absolute confidentiality cannot be maintained, and these are usually determined within ethics governance protocols. As an example, in a study we conducted on exposure to violence among adolescents experiencing homelessness (Heerde & Pallotta-Chiarolli, 2020), we considered the case of an adolescent admitting to perpetrating assault, and whether we were required to break confidentiality and inform the police. In Australia under the Privacy and Data Protection Act 2014 (formerly known as the Information Privacy Act 2000), any personal information concerning research participants is confidential. Thus, we were under no obligation to report criminal activity to the police, and personal information that was recorded in any form was protected as being confidential under the Act. Understanding research requirements in different jurisdictions is important. Communicating these legalities with adolescents is important for researchers to develop trust and mitigate power imbalances. Many adolescents experiencing marginalisation have faced power imbalances that have contributed to their vulnerability. As researchers, we should exercise reflexivity and, as much as possible, try to understand the power imbalances or potential stigma between the researcher and adolescents. In our work with adolescents who are pregnant or parenting, it is implicit that most researchers have valued completing formal education, which ordinarily has the requirement to delay or forgo pregnancy. This creates a power imbalance and the potential for unconscious bias from researchers. As another example, the experience of homelessness for adolescents often comprises implicit and explicit rules that are again often based on power imbalance, coercion and exploitation. There is a danger for this group that the process of reimbursement for research participation, for example, inadvertently reflects these same processes. As described below, careful consideration is given to ensuring that this reimbursement is not seen as an inducement for participation. We provide adolescents with both the audio recording and written transcript of their interview, noting that the adolescent owns the data, and they have the right to re-use it for their own purposes. This process is set up during the process of obtaining assent. Adolescents are invited to share a current email address to facilitate returning their recording and transcript. In the case of adolescents wishing to receive their interview data, but not having a valid email address, we have arranged to meet them at the location where they were interviewed and provided this data to them on a USB flash drive. Remuneration for Research Participation Offering reimbursements, such as money, gift cards, or expense reimbursements to adolescents involved in research, is an important part of expressing appreciation for their time and participation. It also acknowledges that the disclosure of sensitive issues and personal trauma

394  Handbook of sensitive research in the social sciences during the research process can be emotionally demanding. Reimbursements have also been reported to increase response rates (Abdelazeem et al., 2023). However, the economic vulnerability of adolescents means that we must safeguard (as much as possible) against financial reimbursement being an incentive for research participation that resembles coercion to engage in research that they might otherwise choose not to (such as due to safety concerns) or threatens the authenticity of informed consent (Ensign, 2003). To address this, the amount of remuneration should be adequate (but not excessive) and take into consideration the time demands of participating in the study and possible expenses incurred (the cost of travel to an interview location, for instance; Afkinich & Blachman-Demner, 2020). When participant reimbursement is provided during the research process is also important. For example, in our work, we provide adolescents with monetary reimbursement, in the form of vouchers redeemable at a range of stores, to acknowledge their time and participation. These vouchers are provided to adolescents prior to commencing data collection with the intention of reducing the likelihood they feel pressured or coerced into sharing their insights in exchange for the voucher (Heerde & Pallotta-Chiarolli, 2020).

ADMINISTRATIVE DATA LINKAGE AS A NEW RESEARCH APPROACH The many research challenges and considerations discussed here beg the question of how we might obtain more comprehensive data on adolescents experiencing marginalisation and better document their health and health risks. New opportunities are offered through multisectoral data linkage. This is data collected by health (such as hospitals, coroners) and social welfare providers (such as homeless services), as well as billing data from universal health insurance schemes (such as Medicare). Linked administrative data can be used both as a standalone approach and embedded within traditional cohort studies (Heerde & Patton, 2020). Notwithstanding its limitations (Harron et al., 2017), this approach provides specific advantages for research with adolescents experiencing marginalisation. Largely, the use of administrative data permits the analysis of very detailed data from large population-based samples, with minimal loss of participants over time. It provides opportunities to better understand how many adolescents experience marginalisation and more fully ascertain their utilisation of, and pathways through, health and welfare services over time. We can also characterise the fatal and non-fatal burden of marginalisation (for example, the number of adolescents experiencing homelessness who die, their cause of death, and how access to health services changes this). It provides a substantial basis from which to understand health and health disparities as well as inform efforts to reduce marginalisation and improve health status. This data can also be used to monitor interventions. Importantly, the analysis of linked administrative data offers specific advantages for increasing the visibility of and studying intersectionality among adolescents, such as youth justice involvement or child protective services. Associating with multiple marginalised identities often leads to further exclusion of adolescents from both research and health services (Marmot, 2018), increasing their risk for poor health outcomes. Although the use of such data is in its infancy with adolescents experiencing marginalisation, there are examples of using this method with adolescents in government care (Brownell & Jutte, 2013) and adolescents with a history of justice involvement (Calais-Ferreira et al., 2023).

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ENGAGING ADOLESCENTS IN THE RESEARCH PROCESS Globally, the past few years have been difficult for adolescents. Most have had to navigate the complexities of a global health pandemic and its far-reaching social and fiscal impacts. Others live in communities where, too often, there is rampant injustice, state-sanctioned violence, and discrimination against communities of colour and Indigenous groups. All are facing the consequences of climate change and environmental degradation. Now more than ever, it is critical to engage adolescents in community-building efforts (Ginwright, 2007). There is an emerging focus on integrating lived experience into research processes (Andrews & Heerde, 2021; Davies et al., 2021). It is important, however, to remember that adolescents experiencing marginalisation, for example, those with a history of homelessness or involvement in the justice system, or who are pregnant or parenting, or who live in conservative communities and countries, have differing levels of agency, opportunity for advocacy, and reasons for wanting to engage in the research process (Sawyer & Begun, 2023). Scholars have noted that adolescents have been routinely ‘handed a second-class ticket’ in the democratic process (Thackeray & Hunter, 2010). One approach to counter this is to heed the calls of those seeking to more authentically centre the voices of adolescents in research, service design, programme development, and civic engagement (Anyon et al., 2018; Checkoway & Richards-Schuster, 2003; Kirshner et al., 2005). Often, these approaches engage the most articulate or well-resourced adolescents. While important, it is equally relevant to facilitate opportunities for adolescents who bring a lived experience of vulnerability and marginalisation to meaningfully participate in research processes, advocacy, and dialogue about the issues of greatest relevance to them. Engaging adolescents experiencing marginalisation and vulnerability takes considerable time and patience. For example, it can be challenging for those adolescents who have been silenced in their lives to experience the process of having a ‘voice’. Thus, the inclusion of appropriate support mechanisms, built in prior to a study or engagement commencing and upheld throughout the project, is important. Efforts to facilitate engagement have positively shaped adolescents’ attitudes and behaviours regarding their health and wellness (Winkleby et al., 2004). Community-based mobilisation efforts have also been shown to help mitigate the effects of the profound social isolation experienced by the groups of adolescents discussed in this chapter (Krieger, 2020). Why Engage Adolescents in Research? Involving adolescents in the process of conceptualising research has been shown to improve the reliability of the data gathered, as well as facilitate greater trust and transparency in building sustainable adolescent-adult research partnerships (Kirshner et al., 2005; Powers & Tiffany, 2006). When adolescents are meaningfully engaged through participatory action research that foregrounds their contributions to social and community change, they can develop an array of valuable skills, including enhanced critical thinking, deeper social networks and connections, communication skills and advocacy strategies, and leadership capabilities to act as changemakers and peer-to-peer mentors (Anyon et al., 2018; Checkoway & Richards-Schuster, 2003; Powers & Tiffany, 2006). Engaging adolescents in community action research exposes them to new ideologies that may help them better understand their potential roles within their communities (Ramey et al., 2017). Drawing on their lived experience, with support from adult

396  Handbook of sensitive research in the social sciences allies and mentors, can help adolescents explore issues of greatest relevance to them and enable the design of safer spaces for them (Camino, 2000). Adolescents can and should be involved in every aspect of the research process. Importantly, the deep knowledge derived from their lived experiences and intersecting identities enriches the formulation of research questions, ethics protocol development, recruitment and outreach to participants and communities, data collection processes, data analysis, and knowledge mobilisation. Engaging adolescents as researchers provides exciting opportunities for ‘flipping the script’—conventionally, adult researchers place adolescents under the research microscope. When adolescents design and ask questions through research, we inevitably gain different answers to different questions and obtain different knowledge. Research Translation and Advocacy Adolescents experiencing marginalisation face complex circumstances that involve health, education, law, and welfare systems, with these circumstances often challenging social norms around gender, age, marriage, sexuality, and race. They can have their own identities, languages, and ways of interacting. They have unique needs and priorities that require multisectoral responses. They require adolescent-responsive healthcare, targeted support enabling them to pursue their educational and employment aspirations, and a structural environment that facilitates health and wellbeing. Research translation and advocacy are critical for conveying adolescents’ contexts and realities to the social and healthcare sectors and to policymakers. Yet, research translation and advocacy can often be highly politicised for each group discussed in this chapter. As one example, the highly politicised nature of justice systems and facilities likely contributes to a reluctance of these facilities to participate in research and limitations to research findings being made publicly available (irrespective of findings), a term known as ‘epistemophobia’ (Pearce et al., 2023). Ideally, our use of research evidence to inform policy and practice employs an integrated knowledge translation approach. Using this approach, key stakeholders, including adolescents experiencing marginalisation, co-design the project from its inception through to the dissemination of findings. Researchers partner with knowledge users throughout the research process and with key stakeholders who can use the research recommendations in practice or policy (Straus et al., 2009). This process helps ensure that any knowledge co-produced by key stakeholders is more readily applied to inform policy and practice. Depending on the context, it may be helpful to develop relationships with researchers working with adolescents experiencing marginalisation locally and globally (for instance, at conferences and through online forums) or to create networks of academic colleagues that can provide collaboration opportunities and support when challenges arise.

PRACTICES FOR NURTURING RESEARCHERS’ WELLBEING Conducting research with adolescents experiencing marginalisation and vulnerability is a privilege. However, it involves navigating ethical and practical challenges and exposes researchers to sensitive, emotionally and psychologically demanding topics (Liamputtong, 2007; DicksonSwift et al., 2008; see also Chapters 1 & 3). Adolescents’ stories can be difficult to hear. They talk of past abuse or ongoing violence, family conflict, discrimination, exploitation, bullying,

Research with adolescents experiencing marginalisation and vulnerability  397 loss, and grief. They are often still traversing unsafe social worlds and may be living in emotionally and physically harmful circumstances. As researchers, we bear witness to their life experiences, hear their words, and see their expressions and discomfort. We also hear their successes, see their strengths, validate their worth, and listen as they express their dreams for the future. We show compassion, but we also withhold our own strong emotions or reactions to their stories during data collection, data analysis, or when conveying research findings. Researchers working on projects involving adolescents experiencing marginalisation and vulnerability bring their own varied lived experiences. Our work is often driven by a desire to inform action and build evidence to address social and health issues. For some, engagement in research may be driven by their own lived experiences. In conducting research with groups of adolescents experiencing vulnerability, the impact of a researcher’s own lived experience (for example, past trauma) can be inadvertently triggered through the research process in unexpected and deeply poignant, personal, and emotionally demanding ways. The training, supervision, and mentoring of all research staff is therefore central to the successful conduct of the research and to researcher wellbeing. Across our work, ensuring staff have a thorough understanding of the research project and research processes (that is, engaging study participants, active listening, and rapport-building) has been crucial to the conduct of each study and ensuring the wellbeing of participants and research staff. An important part of building these understandings has been assisting research staff in becoming familiar with the systems that adolescents interact with, whether child welfare, homeless and justice systems, or healthcare settings, before engaging in the research process. During the research project, regular staff meetings and debriefing sessions provide an opportunity to acknowledge and discuss sensitive issues, share successes, maintain enthusiasm for the project, and convey appreciation for staff efforts (Dickson-Swift et al., 2008). In this way, researchers work together in mentoring roles and provide emotional support and guidance critical to reducing the potentially overwhelming emotional and psychological burden that can accrue from research with adolescents experiencing marginalisation and vulnerability (Molnar et al., 2020).

CONCLUSION AND FUTURE DIRECTIONS This chapter has explored strategies for conducting research with adolescents experiencing marginalisation and vulnerability in different contexts. It has covered six main areas: conceptualisation of marginalisation, vulnerability, and intersectionality; the health burden of marginalisation; strategies for engaging and retaining adolescents with lived experience of marginalisation and vulnerability; the use of administrative data linkage as a new research method; research translation and advocacy; and practices for nurturing researchers’ wellbeing. Collectively, we view the opportunity to conduct research with adolescents experiencing marginalisation as a privilege. There are many complex challenges facing contemporary adolescents, particularly those who are experiencing marginalisation and vulnerability. These challenges underscore the critical need to prioritise them in research. Although engaging adolescents experiencing marginalisation in research is, in itself challenging, increasing their representation in research is essential to reducing health and social inequities. Adolescents are the next generation, and their successful transition to adulthood sets a foundation from which we shape future

398  Handbook of sensitive research in the social sciences population health. To achieve this, we must be bold and broaden the scope and design of research involving adolescents experiencing marginalisation. It is only then that we can properly inform planning, policy, and investments to ensure the healthy futures of these adolescents and that of the next generation.

ACKNOWLEDGEMENTS We wish to acknowledge and extend our appreciation to all adolescents, the staff working within the systems these adolescents interact with, and the project staff who have been involved in our research.

FUNDING ACKNOWLEDGEMENTS Associate Professor Jess Heerde is supported by a National Health and Medical Research Council (NHMRC) Emerging Leadership Investigator Grant (GNT2007722). She holds a Dame Kate Campbell Fellowship awarded by the Faculty of Medicine, Dentistry, and Health Sciences at the University of Melbourne. Dr Lucas Calais Ferreira is supported by a Suicide Prevention Australia Postdoctoral Fellowship. Professor Susan Sawyer is supported by the Geoff and Helen Handbury Chair of Adolescent Health, Department of Paediatrics, the University of Melbourne, and an NHMRC Investigator Grant (GNT1196999).

NOTES 1. We acknowledge variations and nuances in terminology used to encompass the broad spectrum of sexual and gender identities, orientations, and practices of people globally, and that these terms are embedded within significant historical contexts. In this chapter, we use the phrase ‘adolescents with diverse genders and sexualities’ to refer to adolescents of diverse gender and sexual identities, orientations and practices. 2. Types of government care vary across international settings, but often lie within family and child welfare services and child protection systems in high-income countries. This includes foster care, out-of-home care, kinship care, and residential care (PriceRobertson et al., 2014). Government care is designed to provide a safer and more stable environment for adolescents who are unable to live with their families (Heerde et al., 2023). Considerations outlined in this chapter have been drawn from the foster care system in the United States. 3. Adolescents in contact with the justice system include those sentenced to communitybased supervision or a period of detention in a youth or adult prison. 4. Culturally safe healthcare is that which is socially, emotionally, and physically safe and where there is no assault, challenge, or denial of a person’s identity or needs (Davies et al., 2021).

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REFERENCES Abdelazeem, B., Hamdallah, A., Rizk, M. A., Abbas, K. S., El-Shahat, N. A., Manasrah, N., Mostafa, M. R., & Eltobgy, M. (2023). Does usage of monetary incentive impact the involvement in surveys? A systematic review and meta-analysis of 46 randomized controlled trials. PLoS One, 18(1). https:// doi​.org​/10​.1371​/journal​.pone​.0279128. Abshire, M., Dinglas, V. D., Cajita, M. I. A., Eakin, M. N., Needham, D. M., & Himmelfarb, C. D. (2017). Participant retention practices in longitudinal clinical research studies with high retention rates. BMC Medical Research Methodology, 17(1), 1–10. Afkinich, J. L. & Blachman-Demner, D. R. (2020). Providing incentives to youth participants in research: A literature review. Journal of Empirical Research on Human Research Ethics, 15(3), 202–215. Ajayi, A. I., Athero, S., Muga, W., & Kabiru, C. W. (2023). Lived experiences of pregnant and parenting adolescents in Africa: A scoping review. Reproductive Health, 20(1), 113. Andrews, C. & Heerde, J. A. (2021). A role for lived experience leadership in Australian homelessness research. Parity, 34(6), 22–23. Anyon, Y., Bender, K., Kennedy, H., & Dechants, J. (2018). A systematic review of youth participatory action research (YPAR) in the United States: Methodologies, youth outcomes, and future directions. Health Education & Behavior, 45(6), 865–878. Banke-Thomas, O. E., Banke-Thomas, A. O., & Ameh, C. A. (2017). Factors influencing utilisation of maternal health services by adolescent mothers in Low-and middle-income countries: a systematic review. BMC Pregnancy and Childbirth, 17(1), 1–14. Baxter, S., Enderby, P., Evans, P., & Judge, S. (2012). Barriers and facilitators to the use of high‐technology augmentative and alternative communication devices: a systematic review and qualitative synthesis. International Journal of Language & Communication Disorders, 47(2), 115–129. Bonevski, B., Randell, M., Paul, C., Chapman, K., Twyman, L., Bryant, J., Brozek, I., & Hughes, C. (2014). Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Medical Research Methodology, 14, 1–29. Brownell, M. D. & Jutte, D. P. (2013). Administrative data linkage as a tool for child maltreatment research. Child Abuse & Neglect, 37(2–3), 120–124. Calais-Ferreira, L., Butler, A., Dent, S., Preen, D. B., Young, J. T., & Kinner, S. A. (2022). Multimorbidity and quality of primary care after release from prison: a prospective data-linkage cohort study. BMC Health Services Research, 22(1), 876. Calais-Ferreira, L., Young, J. T., Francis, K., Willoughby, M., Pearce, L., Clough, A., Spittal, M. J., Brown, A., Borschmann, R., & Sawyer, S. M. (2023). Non-communicable disease mortality in young people with a history of contact with the youth justice system in Queensland, Australia: a retrospective, population-based cohort study. The Lancet Public Health, 8(8), e600–e609. Camino, L. A. (2000). Youth-adult partnerships: Entering new territory in community work and research. Applied Developmental Science, 4(S1), 11–20. Capaldi, D. & Patterson, G. R. (1987). An approach to the problem of recruitment and retention rates for longitudinal research. Behavioral Assessment, 9(2), 169–177. Chambers, B. D. & Erausquin, J. T. (2015). The promise of intersectional stigma to understand the complexities of adolescent pregnancy and motherhood. Journal of Child and Adolescent Behavior, 3(4), 249. Checkoway, B. & Richards-Schuster, K. (2003). Youth participation in community evaluation research. The American Journal of Evaluation, 24(1), 21–33. Conn, B. M., de Figueiredo, S., Sherer, S., Mankerian, M., & Iverson, E. (2018). “Our lives aren’t over”: A strengths-based perspective on stigma, discrimination, and coping among young parents. Journal of Adolescence, 66, 91–100. Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum, 1, 139–167.

400  Handbook of sensitive research in the social sciences Davies, C., Robinson, K. H., Metcalf, A., Ivory, K., Mooney-Somers, J., Race, K., & Skinner, S. R. (2021). Australians of diverse sexual orientations and gender identities. In T. Dune, K. McLeod, & R. Williams (eds), Culture, diversity and health in Australia (pp.213–231). Routledge. Dickson-Swift, V., James, E. L., Kippen, S., & Liamputtong, P. (2008). Risk to researchers in qualitative research on sensitive topics: Issues and strategies. Qualitative Health Research, 18(1), 133–144. Ellis-Sloan, K. (2014). Teenage mothers, stigma and their ‘presentations of self’. Sociological Research Online, 19(1), 16–28. Ensign, J. (2003). Ethical issues in qualitative health research with homeless youths. Journal of Advanced Nursing, 43(1), 43–50. Garvey, R., Pedersen, E. R., D’Amico, E. J., Ewing, B. A., & Tucker, J. S. (2018). Recruitment and retention of homeless youth in a substance use and HIV-risk reduction program. Field Methods, 30(1), 22–36. Ginwright, S. A. (2007). Black youth activism and the role of critical social capital in Black community organizations. American Behavioral Scientist, 51(3), 403–418. Harron, K., Dibben, C., Boyd, J., Hjern, A., Azimaee, M., Barreto, M. L., & Goldstein, H. (2017). Challenges in administrative data linkage for research. Big Data & Society, 4(2). https://doi​.org​/10​ .1177​/2053951717745678. Heerde, J. A. & Pallotta-Chiarolli, M. (2020). “I’d rather injure somebody else than get injured”: An introduction to the study of exposure to physical violence among young people experiencing homelessness. Journal of Youth Studies, 23(4), 406–429. http://dx​.doi​.org​/10​.1080​/13676261​.2019​ .1610558. Heerde, J. A. & Patton, G. C. (2020). The vulnerability of young homeless people. The Lancet Public Health, 5(6), e302–e303. Heerde, J. A., Begun, S., Pearce, L., Kacholia, V., Logie, C., Patton, G. C., & Sawyer, S. (2023). Homelessness and housing insecurity. In E. Neblett & W. Troop-Gordon (eds), Encyclopedia of adolescence (2nd ed.). Elsevier. Jones, C., Whitfield, C., Seymour, J., & Hayter, M. (2019). ‘Other girls’: A qualitative exploration of teenage mothers’ views on teen pregnancy in contemporaries. Sexuality & Culture, 23(3), 760–773. Kinner, S. (2019). The mental health of justice-involved adolescents: Submission to the Royal Commission into Victoria’s Mental Health System. Melbourne, Victoria: The University of Melbourne. Kirshner, B., O’Donoghue, J., & McLaughlin, M. (2005). Youth-adult research collaborations: Bringing youth voice to the research process. In J. Mahoney, R. Larson, & J. Eccles (eds), Organized activities as contexts of development: Extracurricular activities, after-school and community programs (pp.131–156). Mahwah, NJ: Lawrence Erlbaum Associates. Krieger, N. (2020). ENOUGH: COVID-19, structural racism, police brutality, plutocracy, climate change—and time for health justice, democratic governance, and an equitable, sustainable future. American Journal of Public Health, 110(11), 1620–1623. Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. London: Sage. Liamputtong, P. (2019). Social determinants of health. Melbourne: Oxford University Press. Mann-Feder, V. R. & Goyette, M. (2019). Leaving care and the transition to adulthood: International contributions to theory, research, and practice. Oxford: Oxford University Press. Marmot, M. (2005). Social determinants of health inequalities. The Lancet, 365(9464), 1099–1104. Marmot, M. (2018). Inclusion health: addressing the causes of the causes. The Lancet, 391, 186–188. Mathews, B. (2022). Adolescent capacity to consent to participate in research: A review and analysis informed by law, human rights, ethics, and developmental science. Laws, 12(1), 2. Meyer, I. H. (2003). Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychological Bulletin, 129(5), 674–697. Meyers, K., Webb, A., Frantz, J., & Randall, M. (2003). What does it take to retain substanceabusing adolescents in research protocols? Delineation of effort required, strategies undertaken, costs incurred, and 6-month post-treatment differences by retention difficulty. Drug and Alcohol Dependence, 69(1), 73–85. Molnar, B. E., Meeker, S. A., Manners, K., Tieszen, L., Kalergis, K., Fine, J. E., Hallinan, S., Wolfe, J. D., & Wells, M. K. (2020). Vicarious traumatization among child welfare and child protection

Research with adolescents experiencing marginalisation and vulnerability  401 professionals: A systematic review. Child Abuse & Neglect, 110(3), https://doi​.org​/10​.1016​/j​.chiabu​ .2020​.104679. Montanaro, E., Feldstein Ewing, S. W., & Bryan, A. D. (2015). What works? An empirical perspective on how to retain youth in longitudinal human immunodeficiency virus (HIV) and substance risk reduction studies. Substance Abuse, 36(4), 493–499. Munari, S. C., Wilson, A. N., Blow, N. J., Homer, C. S., & Ward, J. E. (2021). Rethinking the use of ‘vulnerable’. Australian and New Zealand Journal of Public Health, 45(3), 197–199. Narendorf, S. C., Brydon, D. M., Santa Maria, D., Bender, K., Ferguson, K. M., Hsu, H.-T., BarmanAdhikari, A., Shelton, J., & Petering, R. (2020). System involvement among young adults experiencing homelessness: Characteristics of four system-involved subgroups and relationship to risk outcomes. Children and Youth Services Review, 108. https://doi​.org​/10​.1016​/j​.childyouth​.2019​.104609. Neal, S., Mahendra, S., Bose, K., Camacho, A. V., Mathai, M., Nove, A., Santana, F., & Matthews, Z. (2016). The causes of maternal mortality in adolescents in low and middle income countries: a systematic review of the literature. BMC Pregnancy and Childbirth, 16(1), 1–18. Patton, G. C., Olsson, C. A., Skirbekk, V., Saffery, R., Wlodek, M. E., Azzopardi, P. S., Stonawski, M., Rasmussen, B., Spry, E., & Francis, K. (2018). Adolescence and the next generation. Nature, 554(7693), 458–466. Pearce, L. A., Borschmann, R., Young, J. T., & Kinner, S. A. (2023). Advancing cross-sectoral data linkage to understand and address the health impacts of social exclusion: Challenges and potential solutions. International Journal of Population Data Science, 8(1). Powers, J. L. & Tiffany, J. S. (2006). Engaging youth in participatory research and evaluation. Journal of Public Health Management and Practice, 12, S79–S87. Price-Robertson, R., Bromfield, L., & Lamont, A. (2014). International approaches to child protection: What can Australia learn? Melbourne: Australian Institute of Family Sutides. Ramey, H. L., Rose-Krasnor, L., & Lawford, H. L. (2017). Youth–adult partnerships and youth identity style. Journal of Youth and Adolescence, 46, 442–453. Robards, F., Kang, M., Luscombe, G., Hawke, C., Sanci, L., Steinbeck, K., Zwi, K., Towns, S., & Usherwood, T. (2020). Intersectionality: Social marginalisation and self-reported health status in young people. International Journal of Environmental Research and Public Health, 17(21). https:// doi​.org​/10​.3390​/ijerph17218104. Ruberg, B. & Ruelos, S. (2020). Data for queer lives: How LGBTQ gender and sexuality identities challenge norms of demographics. Big Data & Society, 7(1). https://doi​.org​/10​.1177​/2053951720933286. Sanci, L. A., Sawyer, S. M., Weller, P. J., Bond, L. M., & Patton, G. C. (2004). Youth health research ethics: time for a mature-minor clause? Medical Journal of Australia, 180(7), 336–338. Sawyer, S. M., Azzopardi, P. S., Wickremarathne, D., & Patton, G. C. (2018). The age of adolescence. Lancet Child & Adolescent Health, 2(3), 223–228. Sawyer, S. M., & Begun, S. (2023). Youth participatory research needed to keep time ticking forward. Journal of Adolescent Health, 73(6), 967–968. Seed, M., Juarez, M., & Alnatour, R. (2009). Improving recruitment and retention rates in preventive longitudinal research with adolescent mothers. Journal of Child and Adolescent Psychiatric Nursing, 22(3), 150–153. Sheehan, P., Sweeny, K., Rasmussen, B., Wils, A., Friedman, H. S., Mahon, J., Patton, G. C., Sawyer, S. M., Howard, E., & Symons, J. (2017). Building the foundations for sustainable development: a case for global investment in the capabilities of adolescents. The Lancet, 390(10104), 1792–1806. Stein, M. & Munro, E. R. (2008). Young people’s transitions from care to adulthood: international research and practice. London: Jessica Kingsley Publishers. Straus, S. E., Tetroe, J., & Graham, I. (2009). Defining knowledge translation. Canadian Medical Association Journal, 181(3–4), 165–168. Svanemyr, J. (2020). Adolescent pregnancy and social norms in Zambia. Culture, Health & Sexuality, 22(6), 615–629. Thackeray, R. & Hunter, M. (2010). Empowering youth: Use of technology in advocacy to affect social change. Journal of Computer-Mediated Communication, 15(4), 575–591.

402  Handbook of sensitive research in the social sciences Travers, R., Bauer, G., & Pyne, J. (2012). Impacts of strong parental support for trans youth: A report prepared for Children’s Aid Society of Toronto and Delisle Youth Services. Winkleby, M. A., Feighery, E., Dunn, M., Kole, S., Ahn, D., & Killen, J. D. (2004). Effects of an advocacy intervention to reduce smoking among teenagers. Archives of Pediatrics & Adolescent Medicine, 158(3), 269–275.

27. Researching young people’s experiences with alcohol, drinking and drunkenness Samantha Wilkinson and Catherine Wilkinson

INTRODUCTION It has been recently argued that there is a need to seize the opportunities offered by developing new, innovative, and creative methodological strategies to research alcohol, drinking and drunkenness (Jayne & Valentine, 2023). Jayne and Valentine also argue for the need for fruitful critical reflection on positionality and research ethics when researching alcohol consumption practices and experiences, and beyond. In responding to this identified need, intertwined with reflections from the first author’s research exploring the drinking practices and experiences of young people, aged 15–24, in the suburban case study locations of Chorlton and Wythenshawe, Manchester, in the UK, this chapter offers guidance on researching with young people to explore their alcohol consumption practices and experiences. We provide insight into recruiting participants to take part in research surrounding drinking, including reflecting on gatekeeping. Further, we highlight a variety of methods that may be used, individually or in conjunction with one another, for participants to ‘opt into’ to tell their drinking stories, including interviews, peer interviews, drawing-elicitation interviews, diaries, and participant observations. More than this, we encourage researchers to think critically about how often underexplored aspects of their positionality, including age, appearance, voice, and personality, can influence research relationships (Wilkinson, 2016). Before drawing this chapter to a close, we highlight the need to go beyond procedural ethics, to see ethics as a process and to be ethically reflexive throughout the research process. As this chapter illustrates, offering a suite of methods for young people to ‘opt into’ (Leyshon, 2002) is an inclusive approach, enabling participants with a variety of different skills to participate in research in ways that are meaningful to them. We also make it evident that these methods should not be deployed in a ‘one size fits all’ manner. We highlight examples where the research design may be refined and developed through listening to the experiences of young people in the study. We conclude by highlighting the value of participatory research designs, which are open to methods being shaped by participants. We propose the idea of a storytelling methodological approach (see Wilkinson, 2023), which can eradicate the issue of not asking the right questions of participants due to an inability to overcome ‘truths’ that travel with the researcher from previous research in other contexts. This approach resists researchers’ ‘prompts’ to focus on the topic at hand, avoiding leading questions (Jayne & Valentine, 2023), and enables finding out more about experiences beyond alcohol consumption per se. This approach can provide a way for researchers to overcome their own situated knowledge and avoid foregrounding alcohol in a way that eclipses other threads of empirical evidence.

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RECRUITMENT AND GATEKEEPERS Whilst one may anticipate that ethical and methodological concerns are the key challenges to involving young people as researchers, and gatekeepers are equally significant (Murray, 2005). ‘Gatekeepers’ are individuals acting as intermediaries between researchers and participants, with the ability to help or hinder research depending on their personal thoughts on the value of the research, along with their approach to the welfare of those under their charge. In the UK, it is often a requirement by schools and other settings, such as youth clubs, that the researcher should have a DBS1 check before being permitted researcher access. As Barker and Smith (2001, p.145) found, this reassures gatekeepers that you are a ‘suitable adult’ and consequently may enable you to gain access to many young people-populated field sites. The first author here shares her experiences of recruiting young people from schools to take part in her research exploring young people’s alcohol consumption practices and experiences. You can see that gatekeepers can present barriers to the voices you hear in your research project. When contacting schools, the response from gatekeepers to my initial e-mail was very poor. I followed up the initial e-mail with a phone call, in which it was often recommended that the e-mail was re-sent ‘FAO’ a specific person. However, yet again, this often failed to result in a reply. Some schools were hesitant to take part, due to the nature of my study; to use one gatekeeper’s precise terminology: “we should be stopping underage drinking, not watching it happen” (field diary). It is noteworthy that some gatekeepers were wary about my involvement; one gatekeeper questioned my policy on reporting illegal activities, such as crime, asserting: “these sorts of things will happen” (field diary). This gatekeeper was dubious about involvement in the study for two reasons: first, by being willing to be involved in the study, young people may end up getting into trouble following the revelation of criminal discourse. Second, as I was - what this gatekeeper termed - a “young girl”, he worried that the “young men” would “show off in front of each other, acting macho”, and putting me in an unsafe position (field diary). Another school refused my access, commenting that whilst my research sounds very “exciting”, they “have recently felt compromised by a research project and therefore it feels right not to proceed” (e-mail correspondence). As can be seen then, past research projects left their traces on some of my potential research sites.

Importantly, the excerpt reflects a protectionist model of young people often exerted by gatekeepers (Sime, 2008), and it can be seen that gatekeepers applied their own local ethics to define the research topic (Sparrman, 2014). This excerpt also highlights the importance of the researcher having positive relationships with research gatekeepers to pave the way for the next generation of researchers. Whilst we have stressed the significance of gatekeepers in this section, participants themselves are the final gatekeepers to research in young people’s spaces (Holt, 2004). This was evident in the first author’s study, with young people agreeing to participate yet then not answering phone calls or emails to arrange interviews or not turning up for interviews. In such instances, researchers must tread the fine line between ensuring they are persistent enough to give the young people the opportunity to participate if they wished to, but had other commitments, but not be overly persistent so as to be accused of what Bengry-Howell and Griffin (2012, p.403) term ‘methodological grooming’. In what follows, we discuss the first author’s experiences of, and provide guidance for, undertaking interviews, peer interviews, drawing-elicitation interviews, diaries, and participant observation with young people to gain insight into their drinking practices and experiences.

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INTERVIEWING YOUNG PEOPLE In-depth, semi-structured interviews can be useful for researching complex behaviours, opinions, and emotions, enabling the researcher to collect a rich depth of information and a diversity of experiences. Prior to conducting interviews, we recommend the researcher undertake pilot interviews with participants within the study age range, as these are beneficial in enabling the researcher to refine their interview schedule. In a semi-structured interview, while researchers may have a list of pre-determined questions, they do not necessarily have to stick to these. Instead, researchers can allow interviews to unfold in a conversational manner (Longhurst, 2003), enabling young people to explore issues they perceive to be important. With the permission of the participants, we would recommend audio-recording interviews to preserve spoken words. The spaces where interviews are conducted are important. In the first author’s research with young people into their drinking practices and experiences, she typically conducted interviews with young people in schools or youth clubs or booked out rooms at the university where she worked—spaces where gatekeepers or colleagues were nearby if she needed any assistance. Some young people, typically those above school/college age, requested that interviews take place in their homes and cafés, and one 24-year-old participant asked if she could conduct the interview in her favourite bar. The first author found interviewing young people in schools to be restrictive due to a lack of time allocated to interview participants and concerns by teachers/headteachers about the research encroaching upon lesson time (Bushin, 2007). Further, interviewing in bars is not ideal due to the noisy location, which often resulted in speakers’ voices being less audible on the audio recordings. Bars are, however, good locations for enabling participants to use the space to prompt discussions about their drinking practices and experiences. The researcher should consider that there are often competing factors in determining a suitable venue. As a researcher, you want a space where you feel safe and have a helping hand if needed and where audio quality would be optimal. Yet, researchers should be mindful that young people in their study may want to be interviewed in a space that they can just turn up to with ease, with no need to travel. In the first author’s study, in-depth interviews with young people explored early experiences of alcohol (for instance, the extent to which alcohol was consumed in their childhood homes; if/how they were introduced to alcohol by parents/siblings/friends); present-day patterns and cultures of consumption (for example, whether and what they drink; types, experiences, and meanings of public and domestic consumption); and wider attitudes to alcohol (including their views of health issues and the use of alcohol in their community). The interviews with the young people were typically undertaken individually. However, some young people asked if the first author could interview them with their friends in what we call ‘friendship group interviews’. The friendship group interview was not a style of interviewing the first author had intended to use; this illustrates the agency of participants to shape the research design and the need for the researcher to be flexible. It is worth noting, though, that adaptations to the research methods used often require an amendment to the ethical approval, and this may prohibit researcher flexibility to a certain extent. Individual interviews can enable a researcher to gain insight into the participants’ perceptions (such as their motivations for drinking, how they feel when they drink, and where they like to drink), which are subjective in nature, unshaped by group dynamics (Kaar, 2007). Further, as Kaar (2007) notes, participants can feel empowered in an individual interview scenario due to the unusualness of being listened to, combined

406  Handbook of sensitive research in the social sciences with the anonymity afforded. While the individual interview has its benefits, there are also advantages to conducting interviews in friendship groups. Friendship group interviews create a non-threatening and comfortable atmosphere for participants to share experiences (Renold, 2005). The situation in which people are interacting as part of a group is much closer to everyday life than the individual encounter with a lone interviewer. There are, however, drawbacks to the friendship interview approach. When interviewing in small groups, a dominant friend can prevail almost entirely over a quieter friend. This can be handled by encouraging quieter participants to share their points of view, for instance, asking if their drinking experiences are similar to or different from those of their friend. Friendship group interviews may allow the researcher to collect data that otherwise may not be available (Miller et al., 2010). In the first author’s study, although on occasion suppressed by more dominant friends, many of the less confident participants may not otherwise have participated in the research without this methodological adaptation. When conducting interviews with young people, it is worth considering whether the researcher will undertake some level of self-disclosure (Watts, 2008) about their drinking practices to encourage participant disclosure and create a non-judgmental atmosphere. Nonetheless, when researching young people’s alcohol consumption practices, the presence of adults as the interviewer may restrict young people from speaking about their experiences and thoughts surrounding drinking (Katainen & Rolando, 2015). Recognising the ‘otherness’ (see Jones, 2008) of those participants younger than the researcher, researchers may wish to employ a peer interview method, in which young people can act as interviewers to bring to the fore another young person’s drinking practices and experiences.

PEER INTERVIEWS The peer interview method acknowledges that young people’s experiences of spaces and places differ from those of adults (Schäfer & Yarwood, 2008). Young people are suitable for conducting peer interviews because they speak the same language as other young people and often have first-hand insights into matters affecting peers, as they are often affected by these issues themselves. As Alderson (2008, p.278) rhetorically questions: ‘If children’s social relations and culture are worthy of study in their own right, then who is better qualified to research some aspects of their lives than children themselves?’ Young people can discuss topics more openly and freely in a peer interview than they would with an adult researcher. The peer interview method can, therefore, potentially offer a ‘genuine perspective’ into young people’s lives (Schäfer & Yarwood, 2008, p.4). If offering participants the choice to opt into a peer interview method, training sessions should be held. After giving a brief introduction to interviewing and how to design, prepare, and conduct interviews about the alcohol consumption practices of their friends, training sessions may address the following issues: protecting the rights of the researched, ensuring health and safety, dealing with unpredictable situations; and planning for things that can go wrong (Schäfer & Yarwood, 2008). In the first author’s study, she found that whilst some young people were happier acting as researchers carrying out the interview she had designed, others were keen to develop questions to ask on their own, with only guidance from her. By training young people to become interviewers, they can become equipped with new skills, which can conceivably give them more control over the project (Schäfer & Yarwood, 2008). Some skills

Researching young people’s experiences with alcohol, drinking and drunkenness  407 gained, such as listening skills, are transferable and can potentially be useful when trying to gain employment. By offering interview training, there is a danger that the peer interviewers may become ‘your’ interviewers, and the tool loses some of its emancipatory potential. Researchers can try to avoid this by ensuring training sessions are interactive and encouraging participants to share their ideas and views—rather than imposing training in a top-down manner. In the first author’s study, whilst she did not set a time restriction on the peer interviews, they each lasted between ten to 30 minutes. This is a shorter duration than a standard research interview between an adult researcher and a young person, both in her research and as reported in the literature. One reason for this is that the young people were relatively inexperienced at using this method (Lushey & Munro, 2014) and did not seem confident in following up with ‘probing questions’ (Kilpatrick et al., 2007). Some young people in the first author’s study, despite attempting to probe for further elaboration, seemed not to grasp the idea of ‘probing’ questions. Take the following exchange where Summer clearly wants more information from Joe, yet, when attempting to do so, simply repeats the initial question and follows this up with a new question—not leaving Joe with enough opportunity to respond: Summer: Could you explain how you would get alcohol if you were going out? Joe: My mate gets it, or get people to go in the shop. Summer: Get people to do in the shop? How does drinking make you feel? Joe: It puts me in a good mood. Summer: Puts you in a good mood? Have you ever had to look after a friend because they’ve been too drunk, could you tell me what you had to do? Joe: Yeah, and took them outside so they could get fresh air. Summer: Get fresh air? Has a friend had to look after you because you’ve been too drunk, could you tell me what they had to do? Joe: No.

(Summer, 16, Joe, 15, Wythenshawe, peer interview) When listening to the recordings, it may be frustrating for an experienced adult researcher to feel as if peer researchers do not ‘probe’ correctly, or ask for elaboration, thereby limiting the potentially rich data. Whilst the researcher is not likely to be present in the immediate interview space for the duration of the peer interview, participants should be aware that the researcher will be listening to the audio recording and, as such, be aware that they are speaking to an ‘invisible audience’. In the first author’s study, young people operated what may be termed ‘small acts of resistance’ (see Hil and Bessant, 1999). For instance, singing into the audio recording device instead of partaking in the interview. Others used the device in an almost journalistic way to report on their surroundings, unrelated to the task. These are examples in which the young people can be seen to have ‘wrested control’ from the researcher. Moreover, peer interviews can provide a space for some young people to playfully fabricate their drinking stories (which may be determined from their use of laughter, tone of voice; and comparing their recollections with what they have told the researcher via other methods); such use of play should not simply be dismissed as untruths (von Benzon, 2015), as these performative perspectives were beneficial in highlighting these young people’s ingrained assumptions about alcohol consumption.

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DRAWING ELICITATION INTERVIEWS Drawing elicitation interviews involve young people drawing a map of their drinking spaces and places, which is then used as a prompt for discussion. A benefit of employing a drawing method over purely verbal interviews, where an immediate response is expected, is that the participants have time to reflect on their responses: ‘the visual representation becomes a process of “working through”, rather than spontaneously responding’ (Literat, 2013, p.210; see also Chapters 9, 11 & 14 in this volume). The use of drawing maps to gain insight into young people’s alcohol consumption practices is uncommon in the literature. However, there are a few notable exceptions. In a study of practices during ‘nights out’, Waitt et al. (2011, p.260) invited participants to sketch their ideas, commenting that drawing provides a means to ‘enrich spatialised narratives uniting people and place’. Additionally, in a study of young people’s drug use in private settings, Ravn and Duff (2015, p.124) used a ‘map-task’ to conduct observations ‘from a distance’ in hard-toaccess places, such as house parties, where researchers may not be permitted physical access to research spaces. The authors suggest that mapping is a less obtrusive method because being present may disrupt the activities, practices, and interactions of most interest. The materiality of what researchers gave participants will influence their recording of information. For instance, different types of pens and paper will result in different representations. Asking participants to draw maps of their drinking spaces and places can enable them to express themselves in a creative manner. While it may be anticipated that maps offer a static snapshot of drinking spaces, in the first author’s study, she was surprised that young people’s mobilities really came through in their drawings. Many young people drew arrows to signal their movements through drinking spaces. Figure 27.1 is an illustrative example:​ Emily has two different routines for a night out in Wythenshawe, both of which are detailed on this map. Emily will either start the night at the park, after which she will walk to her friend’s house. She will then go to a fast-food outlet and return to her friend’s house to sleep. Alternatively, Emily describes pre-drinking at her friend’s house prior to going to a club in Wythenshawe, and then returning to her friend’s house to sleep. When employing this method, it should be recognised that some young people may put a lot of effort into drawing their maps, be proud of their products, and wish to keep them. In such instances, the researcher may ask to scan a copy of the map to keep, allowing the participant to keep the original. In the first author’s study, in some instances, participants gave the researcher permission to voice record them while drawing their maps, enabling her to hear them thinking aloud while drawing. Others preferred drawing their maps without the pressure of being voice recorded, instead allowing the first author to interview them once they had completed their drawings, using their maps as elicitation. If using this method, you should be cautious not to project interpretations onto the images; rather, you should make observations to stimulate further information from the participants by stating things such as, ‘tell me about your image.’ If deploying this method, it is important for personal maps to be analysed in combination with the participants’ explanations and narratives (Emmel, 2008). This method is not, however, without limitations. Maps are not mimetic; participants negotiate what to show, and what not to show, vis-à-vis the potential audience (Jung, 2014). Further, the method is, to an extent, dependent on an individual’s drawing ability (Travlou et al., 2008). Consequently, some maps will be more detailed than others. Researchers using methods that

Researching young people’s experiences with alcohol, drinking and drunkenness  409

(Emily, 20, Wythenshawe)

Figure 27.1  Emily’s night out require drawing should reassure participants that the drawing is not going to be judged on its aesthetic qualities, and any drawing, regardless of how (un)skilled it is, is perfectly acceptable and useful.

DIARIES Researchers should not dismiss written texts as merely static framings; writing is an important practice embroiled in the performativities of many spaces (Merriman et al., 2008). In the first author’s study, she asked young people to complete unstructured solicited written diaries regarding their alcohol consumption experiences over a minimum period of three weeks. Leyshon (2002) contends that utilising a written diary method with young people is challenging, as they perceive it to be time-consuming and it may feel like a form of homework. However, the first author found that some young people were enthusiastic about keeping a written diary; some participants claimed to have ‘never had a diary before’ (Jemima, 15,

410  Handbook of sensitive research in the social sciences Wythenshawe, interview). Far from a tedious homework-like task, for some young people, keeping a diary was novel and exciting. There are benefits to asking participants to complete personal drinking diaries. First, as the diary method is not undertaken face-to-face, it is easier for young people to be candid than in face-to-face methods (Milligan, 2005). Second, by enabling participants to document their own drinking practices in their own space and time, there may be a more empowering research relationship between young people and the researcher. In the context of Finland, Törrönen and Maunu (2011) deployed a diary method to examine the management of social emotions and friendship bonds by analysing young people’s drinking diaries. By asking the young Finns to write freely about all things related to the evening’s main events, the authors contend that the participants take the role of ethnographers, detailing their own lives. If undertaking a diary method, it is important to think about what resources researchers present participants with. The first author presented each participant with a blank A5 notebook and a pen. She did not provide the participants with shop-bought diaries, as she did not want them to feel limited in how much they could write about each day. Equally, however, she chose the A5 notebook with one of the fewest available pages, as she did not want participants to feel overwhelmed by how much they perceived she expected them to write. If undertaking this method, researchers may wish to provide each participant with some guidelines for keeping a drinking diary, suggesting some things the young people may wish to write about (such as their experiences in bars, pubs, clubs, streets, and parks, or their interactions with other people who have been drinking). If doing so, it should be emphasised that these are suggestions only, and thus young people should not restrict what they wish to write about. Diaries are not without their limitations. Diaries are dependent on the participant’s writing skills. Additionally, participants may agree to participate in the diary activity, yet never return the diary to the researcher. If undertaking a diary method, we recommend maintaining regular contact with participants to ensure they keep their diaries up-to-date. In the first author’s study, she was disappointed by the limited detail some of the completed diaries contained; some participants chose to purely quantify what they drank rather than providing insight into their drinking experiences. On the whole, however, this method promotes more personal insights into young people’s alcohol consumption experiences. This can be captured through the words of Kelly (17, Wythenshawe, drawing elicitation interview), a participant in the first author’s study, who said: ‘Ah, I’ll have to write about it. I can’t, I’m not saying that. I’ll write about it.’ While some young people may not feel comfortable verbally articulating their drinking experiences, the diary is a means through which they can express themselves with less embarrassment or fewer feelings of being judged.

PARTICIPANT OBSERVATION Participant observation enables researchers to ‘immerse’ themselves in settings, allowing them to observe drinking occasions firsthand. When conducting participant observation, the researcher should consider the extent to which they will act as an active participant or an observer. In the first author’s study, she adopted an active role as a ‘participant’, rather than solely observing participants in a detached, emotionless manner. However, she was not a full participant; while participants often smoked drugs in her presence—predominantly weed— she refrained from joining in. The first author made a decision prior to entering the field that

Researching young people’s experiences with alcohol, drinking and drunkenness  411 she would not consume any substances she would not normally take (Sandberg & Copes, 2013). However, she did consume alcohol, perceiving that this enabled her to ‘join the party’ without breaking the law (Sandberg & Copes, 2013, p.11). Nevertheless, her consumption of alcohol was limited to ensure that her observations were not impaired. The first author found that consuming a small amount of alcohol during most participant observations helped to ease her incorporation into the groups. On many occasions, however, she found that participants tried to encourage her to get drunk or, at least, were always trying to ensure that she was drinking. Consequently, she utilised the strategy of nursing a drink, as deployed by Donnelly (2014), allowing her to blend in when others were drinking, yet in a manner that allowed her to regulate her intake. Another strategy used was to buy a drink that participants may perceive to be alcohol. For instance, visually, people may presume a Coke to be a vodka and Coke. This can enable the researcher to maintain relative sobriety without young people perceiving them as an outsider. We would recommend the researcher have some participant observation ‘prompts’ that they look over prior to a night in/out with participants, which can help refresh their mind about things they may look out for. The first author recorded some brief, important notes during the nights out/in with participants using the ‘notes’ function on her mobile phone. She typically did this when she went to the toilet; however, she did not have to be too discreet about utilising this function, as it just appeared as if she was texting and, as such, she was able to avoid the impression of supervision (Cattan & Vanolo, 2014). We would recommend then writing detailed field notes regarding participant observation sessions the morning following the night in/out with participants, as close as possible to the event.

BEING REFLEXIVE ABOUT OVER-LOOKED ASPECTS OF POSITIONALITY For quite some time now, influenced by feminist researchers, researchers have been urged to examine their positionality reflexively; that is, to analytically scrutinise one’s positionality, and to actively acknowledge that this position has an impact on the research process and outcome (Berger, 2015; see also Chapter 1). When conducting her research with young people into their alcohol consumption practices and experiences, the first author is aware that her multiple positionings as a white, female, heterosexual researcher, who at the time was in her twenties, inevitably had an impact upon the tenor of the research relationships (Wilson, 2013). However, we claim that a consideration of positionality must go beyond unmasking the key, ‘categorical’ frames of social subjectivities: that is, class, gender, race, and ethnicity, if it wishes to grapple adequately with the messiness of the everyday, and that other aspects of positionality—including age, appearance, voice, personality, and, in the context of this research, drinking biography—influence research relationships, and should be reflected on by researchers (Wilkinson, 2016). Drawing on her experience when conducting research with young people at a community radio station, the second author of this paper, Catherine, has elsewhere traced the connections between researcher personality, researcher appearance, and research friendships (Wilkinson 2016). She provides insight into how her bubbly and friendly personality enabled rapport to be developed between herself and the young people in her study. Moreover, she encourages researchers to reflect on the importance of their personality and the importance

412  Handbook of sensitive research in the social sciences of embellishments including hair colour, makeup, fake tan, and so on, and the role these overlooked micro-bodily elements of positionality can have in creating (messy) friendships with participants. As Hurd (1998) notes, being self-reflexive like this is beneficial for facilitating more complex and layered understandings (see also chapters in Part 3 in this volume).

ETHICAL CONSIDERATIONS WITH TRADITIONAL AND CREATIVE QUALITATIVE METHODS Ethics should be central to all research. It is very important for research exploring young people’s alcohol consumption practices and experiences, due to the age range of participants (involving those under the legal drinking age), the potential harms of excessive drinking, and making public intimate experiences and practices (Waitt et al., 2011). Researchers must seek approval from their university’s ethical committee, which Guillemin and Gillam (2004, p.263) refer to as ‘procedural ethics’. Their research should be undertaken overtly, in which their research intentions are explained to participants prior to, and during, their involvement in the project (see also Chapters 15, 16, 17 & 18). Researchers should inform all potential participants about the research in an accessible information sheet and give them ‘thinking time’ before deciding whether or not they wish to participate in the research project; some recommend a period of two weeks (Waitt et al., 2011). If offering a variety of methods as a means for participants to have their voices heard, it should be emphasised to participants that they can ‘opt into’ whichever methods they wish, rather than putting them in a situation where they have to ‘opt out’ (Leyshon, 2002). It should also be made clear to participants that they can withdraw from the research project up to the point that data has been anonymised, without having to justify their actions. Written informed consent, or equivalent, as agreed by the researchers’ institution’s ethics committee, should be obtained from all participants for their involvement in the research; for interviews to be recorded using an audio recording device; and for information to be used in future publications. If involving those under 16 years of age, alongside gaining assent from the young person, researchers must also gain consent from a parent or carer (Valentine, 1993). Moreover, it should be ensured that ethical procedures are translated into ‘person-friendly’ language that participants understand, and in a young-people-friendly font type. Aware of the potential medical risks of long-term excessive drinking, participant information sheets should provide contact information for an alcohol helpline (such as Drinkline in the UK). Maintaining the confidentiality of participants is crucial. Thus, in line with Kesby (2007), in seeking to maintain truly informed consent, researchers should outline to participants the circumstances in which information provided throughout data collection must be acted upon in some way, due to legal responsibilities, prior to conducting each method, in seeking to maintain truly informed consent. If their research project is multi-stage (adopting different methods with the same participants at different time points), ‘process’ assent and consent should be deployed, rather than seeing consent as an initial one-off agreement (Helseth & Slettebo, 2004); participants should be reminded of their right to withdraw at different stages of the research process. When observing young people’s alcohol consumption practices in public spaces, we concur with Spicker (2011) that undisclosed research in informal settings must be accepted as a normal part of academic enquiry; as such, it is not necessary to gain consent from everyone.

Researching young people’s experiences with alcohol, drinking and drunkenness  413 During participant observations with young people who are consuming alcohol, researchers should deploy a strategy to retain informed consent. Deciding whether to include data acquired when participants appear drunk can be achieved by following up with participants on another occasion, when they are sober, to gauge whether they are comfortable with the inclusion of your observations of their inebriated behaviour (Joseph & Donnelly, 2012). Further, during participant observation, in order to ensure that the researcher does not encourage participants to drink more (in terms of quantity, cost, or alcohol content) than they otherwise would, the researcher should not purchase drinks for, or accept drinks from, participants. Whilst ethical guidelines are useful, they alone are insufficient in ensuring researchers act in an ethical manner. This is because ethical guidelines are not sufficient for addressing ‘ethics in practice’—that is, the day-to-day ethical quandaries arising through the process of doing research (Guillemin & Gillam, 2004, p.264). Spaces and happenings are perpetually in process, and consequently, ethical incidents constantly arise (Horton, 2008). This necessitates the researcher to be ‘ethically reflexive’ (Guillemin & Gillam, 2004) throughout the research process. To ensure confidentiality, all participants, names of friends, pubs, parks and so on referred to by participants in outputs from the project should be allocated a pseudonym. This protects the anonymity of the participants, both on a day-to-day basis and in the process of disseminating research findings. If adopting a drawing elicitation interview method, participants should be asked to use fake names for people and places. This should be checked with the participant after they have finished completing their drawing. With regard to ethical considerations during the diary method, it is not inconceivable that parents, siblings, or friends may take an interest in the diary, partly to know what the young person ‘gets up to,’ and partly for fear that the young person will ‘inform’ on the family (Buchwald et al., 2009). If anyone were to gain access to the diary, it would constitute a considerable breach of confidence, as the diary contains confidential material. As such, the researcher should emphasise to the young people that they must have a safe space in which to store the diary.

HEALTH AND SAFETY Health and safety involve the practical steps researchers take to reduce the likelihood of incidents or accidents causing harm to themselves or others during fieldwork (see Chapter 1). To ensure researchers’ personal safety, they should have a lone-worker strategy. For instance, when scheduling formal interviews, these should be conducted during daylight hours. In contrast to interviews, it is likely that participant observations are undertaken during hours of darkness, and informal interviews may happen in this context. As such, we recommend the researcher adopt a ‘buddy’ system, whereby the researcher notifies a few colleagues where they are going, what time they expect to return, and the procedures their colleagues should follow if they do not return. Researchers should have a protocol in place in case they feel uncomfortable during any research situation (Palmer & Thompson, 2010). Thus, they should have a prepared excuse to leave the research setting (such as stating they feel unwell). The first author had a strategy whereby if she found herself in a situation where the participant refused to let her leave, she would inform them that she needed to contact a colleague to cancel her next interview/participant observation. At this stage, she would have called through

414  Handbook of sensitive research in the social sciences with a coded message: ‘please inform Miss Spencer that I cannot meet her today’—which her ‘buddy’ would have understood to mean ‘danger’, and that the police should immediately be called. Fortunately, the first author never had to follow through with this process, but it put her mind at rest knowing it was in place. Further, we would recommend that the researcher always have a ‘basic kit’ with them (Bullard, 2010), including pens, University ID, and a mobile phone. During participant observations, researchers should consider what they may do if participants’ situations become vulnerable. The first author’s stance was that she would have a limited duty of care towards participants, offering help to those in vulnerable situations, yet recognising that this help may not always be wanted or accepted. However, she found that friends were often very effective at looking after one another (see Wilkinson, 2017), and her assistance was never required.

CONCLUSIONS AND FUTURE DIRECTIONS In this chapter, we have outlined the methods that can be deployed to enhance understandings of young people’s alcohol consumption practices and experiences. We have illustrated that combining qualitative methods can provide young people with the space and time they need to communicate the complexities of their lives. Moreover, the diverse methods can prove to be complementary, with the strengths of one method offsetting the weaknesses of another; for instance, peer interviews may be a useful means of overcoming the issue of ‘otherness’ between young people and adult researchers. We have highlighted the need for an open-ended process in conducting research (Wilkinson, 2023); this can be seen in our commitment to modifying methods, for instance accommodating friendship group interviews, in light of the preferences and characteristics of specific young people. Further, and somewhat related, this chapter has demonstrated that we value a research approach that is reflexive of the challenges and difficulties generated by the research design. We have highlighted the need to be reflexive about ethical situations that emerge in situ, and how aspects of positionality, including the seldom-explored aspects of personality and appearance, can influence rapport with participants. Moving forward, we agree with Jayne and Valentine (2023) that, methodologically speaking, there is a need to engage with approaches that add value to our understanding of alcohol, drinking and drunkenness. We argue for the use of an ‘open’ research design (Wilkinson, 2023), which is both open to adaptation from participants to shape the methods used and not prescriptive in the questions asked. Such an approach allows researchers to look beyond alcohol consumption per se, to provide a fuller, richer, more detailed understanding of how alcohol, drinking and drunkenness constitute the lives of those participating in a study. A participatory approach is one way of achieving this. Participatory research focuses on a process of sequential reflection and action, carried out with, by, and for people, rather than on them (Wilkinson & Wilkinson, 2018). Further, we argue that a storytelling methodological approach, including unstructured narrative interviews, can eradicate the issue of not asking the right questions of participants due to an inability to overcome ‘truths’ that travel with the researcher from previous research in other contexts. This approach resists researchers’ ‘prompts’ to focus on the topic at hand, avoiding leading questions (Jayne & Valentine, 2023), and enables finding out more about drinking-not-drinking practices, experiences, and performances. This approach can provide a way for researchers to overcome their own situated

Researching young people’s experiences with alcohol, drinking and drunkenness  415 knowledge and avoid foregrounding alcohol in a way that eclipses other threads of empirical evidence.

NOTE 1. The Disclosure and Barring Service (DBS) is used to check someone’s criminal record.

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Researching young people’s experiences with alcohol, drinking and drunkenness  417 Waitt, G., Jessop, L. & Gorman-Murray, A. (2011). ‘The guys in there just expect to be laid’: The embodied and gendered socio-spatial practices of a ‘night out’ in Wollongong Australia. Gender, Place & Culture: A Journal of Feminist Geography, 18(2), 255–275. Watts, J. H. (2008). Emotion, empathy and exit: Reflections on doing ethnographic qualitative research on sensitive topics. Medical Sociology Online, 3(2), 3–14. Wilkinson, C. (2016). “Babe, I like your lipstick”: Rethinking researcher personality and appearance. Children’s Geographies, 14(1), 115–123. Wilkinson, C. & Wilkinson, S. (2018). Principles of participatory research. In I. Coyne & B. Carter (eds) Being participatory: Researching with children and young people (pp.15–35). Switzerland: Springer. Wilkinson, S. (2017). Young women’s careful and careless drinking geographies. In J. Horton & M. Pyer (eds) Children, young people and care (pp.192–203). Oxon: Routledge. Wilkinson, S. (2023). Drinking geographies: Towards vital flows and ‘open’ methods. Dialogues in Human Geography, 14(1), 117–120. Wilson, H. F. (2013). Collective life: Parents, playground encounters and the multicultural city. Social & Cultural Geography, 14(6), 625–648.

28. Researching hate crime with LGBTQ+ individuals James Pickles

INTRODUCTION Conducting social research with lesbian, gay, bisexual, trans and queer (LGBTQ+) people is a particularly complex process (see Chapters 5 & 29 in this volume). LGBTQ+ people have always been located within a troublesome legal framework that has (and continues in many nations in the world) criminalised, persecuted, and oppressed them. Indeed, early ‘social’ research on sexuality attempted to medicalise non-heterosexuality and sought to find curative mechanisms to either deter or ‘rehabilitate’ LGBTQ+ people (Anderson & Holland, 2015). Contemporary social research with LGBTQ+ people crosses many disciplines and areas, including but not limited to health, homelessness, education, community building, queer histories, humanitarianism, social inequalities, gender identity, media representation, and violence. Researching hate crime against LGBTQ+ people is particularly sensitive within the social sciences as hate crime per se is a legal and criminal construct, one that only exists within neo-liberal legal frameworks that recognise LGBTQ+ people as a protected characteristic or an enhanced victimised group (Meyer, 2014). Thus, the law must recognise LGBTQ+ people as a legitimate group needing protection rather than an illegitimate group committing a crime (usually of homosexuality) in order for hate crimes to be a recognised legitimate construct. This chapter will focus on researching hate crimes against LGBTQ+ individuals and outline the specific sensitivities for both researchers and participants in this area of social research. First, I will provide an overview of the sensitivities involved in hate crime research generally by exploring the unique ethical and methodological concerns over researching violence and victimisation. There is an abundance of literature detailing general methodological principles and guidelines to conduct qualitative, quantitative, and mixed-methods research within the social sciences and with sensitive research (see other contributors in this volume). This chapter will focus specifically on hate crime as an area of sensitive social research. I will then move to outline the specific barriers, concerns, and difficulties researchers should consider when researching LGBTQ+ hate crime. In particular, I emphasise the importance of honouring the identities and experiences of participants when engaging in hate crime research, as it is these identities that participants have been targeted for and are navigating socially. I consider research with LGBTQ+ young people when carrying out hate crime research and argue that hate crime is an adult-centric framework that rarely includes the perspectives of LGBTQ+ young people. These perspectives often feature in research on school bullying or adult-perpetrated violence rather than being conceived in the same manner as adult victims of hate violence. I turn to consider the role of the researcher in bearing witness to the potential trauma described and outlined by participants experiencing hate crimes. Here, I particularly focus on the emotional labour required of the researchers to conduct their research ethically and 418

Researching hate crime with LGBTQ+ individuals  419 sensitively, and I also outline the specific emotional tolls that can be experienced by LGBTQ+ researchers when researching LGBTQ+ hate crime. Lastly, I conclude that it is in the interest of both the researchers and the participants to provide an affirmative and sensitive space in which pain can be expressed and cared for, where emotions can be reflected on and addressed honestly, where the emotional needs of participants and researchers can be examined and managed, and where both participant and researcher can co-construct a space in dialogue that is safe and beneficial for both parties to explore the realities of hate victimisation.

RESEARCHING HATE CRIME Once an overlooked and niche area of social research, hate crime scholarship over the past ten years has increased substantially. Consequently, hate crime scholars have achieved a relatively in-depth understanding of the impact, tangibility, and frequency of hate crimes through both qualitative and quantitative means. Despite these advancements in knowledge, there are significant methodological considerations to undertake when researching hate crimes. For instance, there is a lack of consensus among scholars over what a hate crime is, how it should be defined and measured, how hate crimes should be monitored, and what identities and characteristics can be aggravators for crimes (Chakraborti & Garland, 2015; Perry, 2001). Further, there is increasing acknowledgement that hate crimes are often committed and experienced intersectionally. Therefore, greater scrutiny over which identities play a prominent role in victimisation when they can be experienced across multiple and interlocking power systems is required (Mason-Bish, 2014). Black queer trans people, for example, experience hate crimes across different racial and gendered intersections and identities than White queer cis people. The precise way an intersectional lens is applied affects the recruitment, scope, and analysis of the research. Understanding hate crime often relies on legal frameworks to define, monitor and conceptualise. Thus, it is incredibly difficult to research the scope of hate crime in nations that do not formally recognise or record instances of hate, either through criminal justice agencies like the police or through community networks (Whine, 2014). Indeed, much scholarly work focuses on a distinct type of hate crime and its overall impact on victims. It is also particularly difficult to compare data internationally, as even countries that similarly legislate against hate crimes operate within a different political and social landscape and, therefore, apply hate crime laws differently; for instance, in countries that have both federal and state applications of law (Woods, 2015). For wider reading, The International Handbook on Hate Crime (2015) scrutinises each strand of hate, perpetrators of hate, hate in differing geographical, cultural, and political contexts, and responses to hate crime through criminal justice mechanisms. However, commentaries on the specific methodologies employed in researching hate have been limited, especially for hate crime research with LGBTQ+ people. This chapter does not have the scope to rehash these general methodological debates in their entirety, and therefore assumes that LGBTQ+ people are (or should be where legal frameworks do not currently recognise) protected against crimes aggravated by their identity. In England and Wales, the Crown Prosecution Service (CPS, 2016, p.2, original emphasis) defines a hate crime as ‘any criminal offence which is perceived by the victim or any other person, to be motivated by hostility or prejudice, based on a person’s disability or perceived disability; race or perceived race; or religion or perceived religion; or sexual orientation or

420  Handbook of sensitive research in the social sciences perceived sexual orientation or a person who is transgender or perceived to be transgender’. These are often colloquially referred to by hate scholars as the five strands of hate crime. For researchers, one of the main areas of scrutiny in hate studies is the parameters of ‘hate’ in motivating offenders to commit crimes against individuals with protected characteristics. Researchers often grapple with questions such as: does hate include prejudice, opportunistic crimes based on prejudices (for example, robbing a gay man because gay men are perceived as weaker), and general disagreeableness, or is it only reserved for crimes committed by the extremes of negative emotions? Thus, the CPS (2016, p.2) also recognises that ‘there is no legal definition of hostility so the CPS uses the everyday understanding of the word which includes ill-will, spite, contempt, prejudice, unfriendliness, antagonism, resentment and dislike’. Individuals or groups who are victimised by hate crimes largely experience heightened social vulnerabilities and marginalisation to violence and oppression (Perry & Alvi, 2012). For instance, the existing five strands of hate—race, religion, sexual orientation, disability, and being transgender—acknowledge that specific protections are required for characteristics that are frequently made vulnerable due to acts of violence. Thus, hate researchers are trying to access, gain consent from, and form relations with groups and individuals that are (often) socially marginalised. There are generally two methodological priorities for hate crime researchers: a) examining the quantitative nature of hate crime and b) understanding the qualitative lived experiences of hate crime. Quantitative understandings of hate crime can generally be achieved through methods such as victim self-report surveys, questionnaires, online surveys, and examination of official statistics such as annual police reports (Home Office, 2023). These approaches are generally advantageous in gaining numerical insights and trends across a data set and, in hate research, can be utilised to examine the extent to which hate crime is perpetrated, recorded, and monitored; how often victims access criminal justice services (Christmann & Wong, 2010); how effective third-party reporting centres are (Fitch-Bartlett & Healy, 2022); and levels of likelihood to report hate crime experiences (Myers & Lantz, 2020). Qualitative approaches, such as semi-structured and unstructured interviews, guided focus groups, reflective logs, and observations, are broadly utilised to gain a substantive non-numerical understanding of the nature, impact, and emotionality of hate crime. Qualitative research is particularly advantageous when conducting ‘sensitive research’ as it is a particularly holistic approach with a high degree of flexibility that can be adopted and adapted depending on the aims of the research (see Liamputtong, 2007; see and Chapter 1 of this Handbook). It, therefore, provides more opportunities for researchers to establish rapport, build community networks, and form relationships with participants, which, for sensitive research enquiries, such as hate crime, is key in building trust (Liamputtong, 2007). Mixed method approaches usually try to achieve a combination of both, by exploring the extent to which hate crime is experienced by a particular community in combination with examining the lived, real-world impact of this experience. Carrying out hate crime research with groups that experience heightened marginality can be particularly challenging due to the ethical, epistemological, and ontological considerations that need to be scrutinised reflexively. The Leicester Hate Crime Project (2014) reflects on some of these difficulties and outlines that before actual fieldwork began, the researchers adopted a ‘softer’ approach by prioritising relationship-building and engagement within the communities they were trying to reach in order to build trust, familiarity, and connection. The research team spent a significant amount of time over prolonged periods in community spaces, including international supermarkets,

Researching hate crime with LGBTQ+ individuals  421 cafes and restaurants, charity shops, community and neighbourhood centres, libraries, health centres, places of worship, pubs and clubs, taxi ranks, and shelters and drug and alcohol services that support “hard to reach” groups’ (The Leicester Hate Crime Project, 2014, p.10). In their later literature detailing the methodologies employed for their research, the research team problematised the notion of ‘hard to reach groups’ within hate research, arguing that future scholars should perceive these groups as being easier to ignore rather than hard to reach (Jade-Hardy & Chakraborti, 2020), due to their likelihood of experiencing social marginality, exclusion, discrimination, and oppression. They advocate that hate researchers consider innovative ways to reach these communities rather than rely on traditional research methods to avoid reproducing the same marginalities by ‘easily ignoring’ these groups. Research examining social marginality and justice arguably requires specific epistemological approaches that centre on the realities and experiences of participants who experience societal inequality. As hate scholarship covers a variety of identities—disabled, queer, racially and religiously minoritised groups, and so on—different standpoint approaches, rooted in feminist methodological traditions (see Harding, 1993), have been utilised to gain theoretical and methodological insights into these groups and the specific social injustices (hate victimisation) that they experience. For instance, Black feminist and critical race standpoints advocate seeing the unique power systems of oppression that influence violence and social injustice enacted on Black people, and specifically how sexism and racism intersect to create a unique form of violence directed towards Black women (Reynolds, 2002). Queer standpoints likewise focus on centring the queer experience at the heart of the methodological and theoretical research approach (Groombridge, 1999). All of these agendas advocate conducting research for the participants involved and the communities they belong to, in order to help change the world to make it a more just and equitable place for them. Intersectional approaches are becoming recognised as a way to conceptualise the interconnectedness of these systems of oppression while also holding space for their individual differences. Legislatively, hate crimes are often viewed using a silo approach and have functioned by adding identity categories as separate entities, where traditionally, only one identity is monitored or recognised as being victimised for recording and conviction purposes (Mason-Bish, 2014). Healy (2019, p.64) argues that utilising an intersectional lens in hate research allows for ‘concurrent analyses of multiple, intersecting elements of identity, based on the principle that the impact of one form of subordination may differ depending on its combination with other potential sources’. In other words, examining how social exclusion is upheld by systemic power structures—class, race, heteronormativity, disablism, etc.—aids the researcher in examining how this social landscape impacts hate crime. For example, Black women arguably navigate violence that is interconnected with both racism and sexism, particularly when it concerns how Black women are depicted in media and digital spaces, through a process that Bailey (2021) terms misogynoir, which requires individualised understandings of how racism is enacted differently towards Black men and how sexism is directed at White women. In addition, studies have suggested that advocating for increased contact with the police for LGBTQ+ victims of hate can place Black LGBTQ+ people at greater risk of police violence as opposed to their White counterparts due to the heightened rate of violence that Black people experience from the police (Meyer, 2012). Thus, intersectional acknowledgements and awareness are required to ensure adequate justice responses are carried out for victims: ‘…although not perfect, a consideration of intersectionality assists in better understanding the

422  Handbook of sensitive research in the social sciences victim experience and points towards potential policy improvements’ in hate crime responses (Mason-Bish, 2014, p.31).

RESEARCHING HATE WITH LGBTQ+ PEOPLE As highlighted previously, many victims of hate are particularly difficult to access without significant effort from researchers to build community networks. For face-to-face access, LGBTQ+ community hubs (Forstie, 2020) are highly desirable in reaching potential LGBTQ+ participants. Reaching out to LGBTQ+-focused bars/nightclubs, youth groups, charities, social spaces, university or college societies, and meet-up groups can be a rich source of access to LGBTQ+ people. LGBTQ+ people who are less ‘active’ in forming community bonds or who do not attend or interact with these in-person community spaces are often more difficult to access. Traditionally, research examining hate crimes would seek out face-to-face participants in a specific locale (such as the Leicester Hate Crime Project, 2014) or those who have a protected characteristic (disablist hate crime or hate crimes against veiled Muslim women, for instance). However, there has been a recent focus on examining online communities due to increased awareness of hate crimes being perpetrated online, largely across social media (Jacks & Adler, 2015). There is a plethora of research which highlights that LGBTQ+ people often utilise online spaces to form bonds, build community relationships and networks, and experiment with and affirm their identities in specific online spaces (Hawkins & Watson, 2017). Distributing surveys, interview requests, and calls for participants across social networking sites such as X (formerly Twitter) can gain significant traction if community figureheads are supportive of the research aims. Personally, I have had considerable success in gaining higher response rates to surveys and interviews when ‘well-known’ queer figures have retweeted or promoted the research agenda. Despite the difficulties in accessing online and offline LGBTQ+ communities, there are a variety of sampling and recruitment methods that can be utilised to gain access to LGBTQ+ people. In order to find out whether rates of suicidality among sexual minority students were more common in areas or neighbourhoods with a higher incidence of hate crimes, Duncan and Hatzenbuehler (2014) obtained a random sample of high school students in Boston (9th–12thgrade students) by targeting schools that had taken part in a previous survey (The Boston Youth Survey) and had provided their full residential addresses. The researchers then obtained a list of unique classrooms for all eligible schools in Boston and randomly selected the classrooms for survey participation. Participating students were asked to identify their sexuality on a 1–6 scale: (1) completely heterosexual, (2) mostly heterosexual, (3) bisexual, (4) mostly homosexual, (5) completely homosexual (gay or lesbian), or (6) not sure. They grouped all respondents who classified their sexuality between two to six under the umbrella of minority sexuality for greater statistical weight and compared the responses in this population to local hate crime data taken from the Boston Police Department. Such approaches are advantageous in gaining a wider, often national picture of trends. For example, Duncan and Hatzenbuehler (2014) found through their comparative analysis that by asking respondents whether they had considered or attempted suicide, sexual minority youth who lived in neighbourhoods with higher incidences of recorded LGBT (sic) hate crime reported higher rates of suicide ideation. However, random sampling often produces very small sample sizes of LGBTQ+ people in

Researching hate crime with LGBTQ+ individuals  423 comparison to the general population, which often requires researchers to group non-heterosexuals together to achieve a higher statistical weight, potentially missing finer, nuanced, and differential details of how hate crime is experienced and targeted. Targeted sampling methods can achieve higher response rates of LGBTQ+ people and allow for more detailed insights into intracommunity dynamics and perspectives. For example, the Count Me In Too Project was an extensive participatory research project for LGBTQ+ people in a specific locale (Brighton and Hove, UK). Carried out over five years, between 2005 and 2010, the project conducted over 80 meetings and events with key stakeholders in the LGBTQ+ community, including activists, voluntary workers, academics, policymakers, and ‘other interested individuals’. The project was specifically designed and conducted to look extensively at differences within the LGBTQ+ collective, with the specific aim of working to connect with less visible and harder-to-reach identities. After establishing a steering group comprised of LGBTQ+ people from minority groups, the group co-designed and promoted a physical and online questionnaire and issued invitations for participation in focus groups to local LGBT community organisations. The questionnaire received 819 responses, and 69 people chose to participate in focus groups. The overall research examined many areas of concern for LGBTQ+ people, including safety, health and wellbeing, relationships, issues in the local geographical area, support services, and so on. The multi-partnership approach, where established groups were targeted by the researchers, enabled them to critique existing hate crime frameworks and advocate for a less siloed approach under a broader social policy framework. The involvement of multi-agency partnerships through a co-participatory agenda allowed the researchers to build upon existing knowledge bases and safety mechanisms for LGBTQ+ people while exposing how homonormative power cut across the wider LGBTQ+ collectives along race, class, and gender to reinforce systems of privilege that shield some LGBTQ+ people from harm while exacerbating the oppression of others (see Browne, Bakshi, & Lim, 2011). Once direct networks are established by the researcher, as in the above example, perhaps from initially targeting LGBTQ+ community hubs, snowballing methods are commonly used in hate crime research to utilise better the community links that marginalised individuals navigate. Snowballing involves ‘going from one case to the next, asking interviewees for other people who might be relevant for the study and the like’ (Flick, 2007, p.39) and often relies on individual community networks. Indeed, utilising snowball methods in this area of research can significantly aid in building upon established community networks and forming new ones to carry out the research and gain access to a wider remit of LGBTQ+ people. Snowball sampling is also particularly advantageous in reaching participants who may be part of a community the researcher is trying to access but are not ‘active’ members of the community or part of any established community links or networks. For instance, when examining Islamophobic hate crimes, Awan and Zempi (2016) targeted mosques, Muslim schools, Islamic university student societies, and Muslim women’s groups. Zempi used these connections to snowball other connections and recruit participants who did not have an affiliation with the local Muslim organisations targeted. Utilising community links for the purpose of LGBTQ+ hate crime research is methodologically fitting as the harms created by hate crimes often ripple through these community links (Noelle, 2002). Hate crimes are sometimes called message crimes by some scholars (see Perry & Alvi, 2012) who argue that the targeting of someone’s core identity through acts of violence sends a terroristic message to everyone who also shares the identity that they are also at risk of

424  Handbook of sensitive research in the social sciences such violence and, in the perpetrator’s view, do not belong. Iganski (2001) posits that the direct harms of hate—the psychological fear and trauma that hate crimes invoke—ripple through communities beyond the direct victim. His waves of harm model (see Figure 28.1) highlights how the direct harm of hate ripples through and is shared by a) the neighbourhood of the initial victim, b) groups beyond the initial victim’s neighbourhood, c) other targeted communities, perhaps local, national, even international; and d) into the very norms and values which uphold social systems of oppression and marginality. Thus, the very community networks that are important in establishing and connecting LGBTQ+ people together allow these harms to carry from the initial hate event. It has also been documented that key high-profile hate crime events like the Orlando shooting of 2016, where Omar Mateen targeted the LGBTQ+ nightclub Pulse on the 12th of June, shooting and killing 49 people and wounding 53 others in a mass attack, carry through to international communities. At the time of the shooting, British LGBTQ+ communities organised vigils and marches to stand in solidarity with their Floridian counterparts. The harms caused by the attack on the initial victims were transmitted across social media and vicariously experienced by international audiences who shared in the distress of the primary event and stood in solidarity with the direct LGBTQ+ victims (Pickles, 2021). Snowball methods of recruitment are, therefore, particularly advantageous in revealing the specific networks through which these waves of harm ripple. Participatory methods are further beneficial in allowing participants to

Source: Adapted from Iganski, 2001.

Figure 28.1  Waves of harm

Researching hate crime with LGBTQ+ individuals  425 co-construct the research space to explore how hate crimes ripple through their community networks, especially if researchers are investigating the impact of anti-LGBTQ+ hate crimes.

RESEARCHING WITH LGBTQ+ YOUNG PEOPLE Involving young LGBTQ+ people—and young people generally (under 18 years old)—within social scientific research, especially sensitive research such as hate crime, requires specific methodological and ethical scrutiny. There is an abundance of methodological, epistemological and ethical commentary on involving children and young people in social research (for instance, readers may wish to consult inter alia Alderson & Morrow, 2020; Fargas-Malet, McSherry, Larkin, & Robinson, 2010; Farrell, 2005). However, involving young LGBTQ+ people in hate crime research requires specific devotion within this discourse due to the particular sensitivities researchers may face when coming across adults who may be a risk to their young participants, for example, homophobic or transphobic family members. It is particularly difficult to include young people who are experiencing homophobic or transphobic hate crimes within research if their parents are the primary perpetrators. Hate crime research is largely an adult-centric field where the perceptions and experiences of adults dominate the scholarly discourse. I have argued elsewhere (see Pickles, 2021) that when it concerns young people, many of the acts which constitute a hate crime, for example, harassment, physical assault, public order offences, verbal abuse, threats of violence, and so on that are aggravated by a young person’s sexual orientation, are often excluded from hate crime typologies. Indeed, despite these acts meeting the criminal threshold for qualifying as a hate crime, these acts are often taken out of this legislative framework and are adopted under typologies of ‘bullying’. For instance, the Anti-Bullying Alliance identifies that while ‘most bullying incidents are not crimes … some types of bullying are illegal and should be reported to the police. This includes bullying that involves violence or assault; theft; harassment and intimidation over a period of time including calling someone names or threatening them, making abusive phone calls, and sending abusive emails or text messages (one incident is not normally enough to get a conviction); and anything involving hate crimes’ (National Children’s Bureau, 2023, n.p.). Including under-18-year-olds in hate research enables researchers to gather the voices of an often-overlooked population within the communities they are researching. There are, however, specific ethical and methodological parameters that need to be considered before, during, and after conducting research with young people in such a highly sensitive area. Traditional ethical guidelines suggest obtaining parental consent on behalf of the child as a gold standard for conducting ethical research. However, research concerning LGBTQ+ young people comes with the additional challenge of considering whether the young person is ‘out’ to their parents or family. Requiring parental consent for young people who are not out would necessitate outing them, which can be an emotionally harmful practice and can place them in a potentially risky position by jeopardising their safety if their family is queerphobic. Utilising traditional and generalised ethical practices, such as requiring parental consent to involve a young LGBTQ+ person in hate research, can place the participant at a greater risk than what would occur during participation in the research per se. Indeed, while all people arguably negotiate some element of risk or comfortableness over what aspects of their identities they reveal, the risks or stakes for those who are more likely to experience social

426  Handbook of sensitive research in the social sciences marginality are often higher. Vivienne, Robards, and Lincoln (2016, p.191) argue ‘the stakes for young gender-diverse and queer people who undertake “performative self-making”, are amplified’ due to the heteronormative social landscape they are navigating and negotiating when making meaning of their identities or presenting their sense of self to others. Thus, it is incumbent upon the researcher to make space for these voices and for the power dynamics that are at play and that may reflect wider social marginalities. Scholars such as Taylor (2008) advocate that ethics panels must resist using adult-centric perceptions of young people as requiring parental consent to be safe; otherwise, they risk wrongly viewing parental consent as guaranteed protectionism in all cases. Indeed, if panels adhere rigidly to parental consent requirements and assess risk inappropriately in research involving lesbian, gay, bisexual, transgender, Two-Spirit, intersex, and queer (LGBTTIQ) youth, ethics committees violate their own guiding principles. For example, by excluding marginalized people from research participation or asking them to put themselves in harm’s way in order to participate, they create greater risk to these participants (Taylor, 2008, p.36). Utilising frameworks that determine whether a young person assents—in other words, whether they are agreeable to taking part in the research—and that this assent is fully informed allows researchers to assess whether the young person is Gillick competent.

Gillick competency is a framework that has been developed from a landmark British case, Gillick v West Norfolk and Wisbech Area Health Authority, initiated by Victoria Gillick in 1982. Gillick opposed children, mainly young girls under 16, being given contraception without parental consent. After going through several appeal processes, the case went to the House of Lords (the second chamber of the UK Parliament) and was overseen by Lord Fraser. Upon the final ruling, it was determined that girls who were under 16 were legally emancipated from parental consent if the girl chose to seek out contraception, so long as they fulfilled several guidelines. These guidelines have since been termed the Fraser Guidelines and acknowledged: (1) that the girl (although under 16 years of age) will understand his advice; (2) that he cannot persuade her to inform her parents or to allow him to inform the parents that she is seeking contraceptive advice; (3) that she is very likely to begin or to continue having sexual intercourse with or without contraceptive treatment; (4) that unless she receives contraceptive advice or treatment her physical or mental health or both are likely to suffer; (5) that her best interests require him to give her contraceptive advice, treatment or both without the parental consent Gillick v West Norfolk and Wisbech Area Health Authority ([1986] A.C. 112: n.p.).

Although they are founded within a medical context, these guidelines have since been used by child protection charities such as the NSPCC, school authorities, youth workers, doctors, social workers, and other formal agencies that come into contact with young people to determine whether a child is Gillick competent, and thus whether they have the capacity to consent and make decisions about their participation in an event, such as seeking medical treatment or participating in research. Researchers who wish to access young LGBTQ+ people to engage them in hate crime research could consider participatory methods with service workers or those who gatekeep them, such as teachers, youth workers, charity leaders, etc., to help assess the competency of young people and apply the Fraser guidelines. Provided that the young person assents, gatekeepers can formalise the consent process by acting as guardians in loco parentis, by co-signing consent forms with the young person and acting as guardians.

Researching hate crime with LGBTQ+ individuals  427 Mechanisms like this have satisfied previous hate crime research that has included young LGBTQ+ people without the consent of parents (Pickles, 2020, 2021).

THE ROLE OF THE RESEARCHER IN BEARING WITNESS LGBTQ+ victims of hate crime have experienced violence towards their identity, in short, because of who they are. It is important, therefore, for researchers to recognise and honour the identities of hate victims. There is a plethora of criminological and psychological evidence that suggests hate crimes are more hurtful than non-hate crimes (see Chakraborti & Garland, 2015; Iganski, 2001; Iganski & Lagou, 2014; Perry & Alvi, 2012). In other words, experiencing violence such as physical assault can be in itself a painful, harmful, and potentially traumatic experience, but being physically assaulted for who you are carries additional emotional pains and traumas. Hate crime offences are, statistically, often more likely to be more physically violent and brutal than non-hate crimes, and victims of hate crimes often experience heightened rates of poor mental health following an incident than non-hate victims and often for much longer. Arguably, this is because hate violence and victimisation constitute a form of ‘spirit injury’, originally developed by Spalek (2006) to describe the brutalisation of the individual spirit that experiences regular social violence, such as sexism, racism, homophobia, and so on. It ‘is the product of the psychological, spiritual and cultural effects of multiple types of racism, sexism and discrimination … and it can lead to the slow death of a person’s soul or psyche’ (Chakraborti & Zempi, 2013, p.69). Arguably, this is what justifies sentencing provisions being enhanced specifically for hate offences and those who perpetrate acts of hate (Iganski & Lagou, 2014). Researchers, therefore, have a responsibility to acknowledge the social fabric in which hate victimisation occurs, and particularly the diverse ways that hate can shape the everyday navigations of participants’ lives within the social world (Burch, 2021). Hate does not occur within a vacuum. It occurs and is manifested within specific social structures—patriarchy, class, heteronormativity, cisnormativity, and so on—which work to oppress and denigrate specific members of society whilst privileging others. For those who have experienced a hate crime, it is likely that they have also experienced a wide range of ‘social otherings’ such as discrimination, everyday violence (Stanko, 1990), microaggressions and microinvalidations (Sue et al., 2007) that contribute to their wider social experience of hate and carry the profound emotional harms described above. This is exemplified by Khosravi’s reflection (2010, pp.83–84) who, after being shot in a racist hate attack, was told by his perpetrator not to take his shooting personally, as it was about his race and not him as an individual: I did not take the bullet personally for the same simple reason that I had been shot for the same reason the young black man had been killed in that Mississippi town in the 1960’s. It was the same reason that sent millions of Jews to the death chambers, that triggered the Tutsi massacre in Rwanda in 1994, the killing of thousands of Bosnians in 1995 in the Srebrenica region, or the hundreds of Palestinian minors in Gaza in January 2009. My history is only a fragment of a longer history of racism and hatred. I am one detail in the continuum of racial othering, of dehumanizing those who are of another colour, belief or culture. So how could I take it personally?

Social researchers, therefore, have a unique and delicate task in conducting research sensitively with victims of hate crime. I would advise that researchers in this research area prioritise

428  Handbook of sensitive research in the social sciences validating the identities and experiences of victims, as, ultimately, there is a risk that researchers may reproduce the same marginalisation, dehumanisation, and harm caused to victims if their experiences and narratives are unintentionally invalidated and ignored (Walklate, Maher, McCulloch, Fitz-Gibbon, & Beavis, 2018). The research space itself is co-constructed through a bidirectional relationship between the researcher and the participant. There is a long history within social research of producing established power dynamics between researcher and participant, where the researcher is presented as the ‘expert’ who is extracting and developing knowledge from participants who are objectified into ‘subjects’, who are there solely to respond to the researcher. Feminist, social action, and socially conscious research have critiqued this approach on ethical, ontological, epistemological, and pedagogical grounds, arguing that the researcher co-constructs knowledge with participants, who are experts in their own lives and experiences of oppression and social injustice, and should work to reject and minimise hierarchies in the research relationship (Eichler, 1997). If researchers situate expertise solely within the confines of academic or scholarly discourse, they risk aligning their social research with dominant discourses and power structures, potentially ignoring the expertise of those who suffer most. Indeed, Fine (2006, p.95) posits that ‘if methodologists insist that being “too close/involved/emotional” is a bias, but “too far/ disengaged/rational”—in the face of injustice—is not, to what extent have we fundamentally clouded our theoretical and empirical insights? Is it not particularly problematic in the study of oppression that we have, in fact, widened the space between “expertise” and “experience?”’ Acknowledging the injustices faced through anti-LGBTQ+ hate crime, providing an affirmative space, can be beneficial for participants. Queer affirmative spaces have been shown to have an overall positive effect on queer people’s mental health, sense of safety, and acceptance of their sense of self (Arguello, 2019), all of which are vital in providing a safe space for participants to give accounts of their experiences of hate victimisation. By providing an affirmative research space, which hears, affirms, and legitimises the experiences of violence from LGBTQ+ people, an ontologically authentic space—a space that is positive and transformative for both participant and researcher ‘in which participants’ own constructions are enhanced or made more informed through their participation in the research’—can be co-constructed (Peck & Mummery, 2022, p.2). Writing step-by-step procedures on how to achieve an affirmative space is difficult due to the diversity of victims and their needs. However, there are basic principles and steps the researcher can take to provide a humanistic, person-centred space. As an example, empowering participants to choose their own pseudonyms, if ethical procedures around anonymity for qualitative research are followed, can provide queer participants the opportunity to choose a name they feel aligns with their gender and identity. For instance, it was noticed that a neurodivergent queer person in a research project exploring LGBTQ+ young people’s hate crime reporting needs (see Gatehouse, Wood, Briggs, Pickles, & Lawson, 2018; Pickles, 2021) preferred their pseudonym to be the moniker GayArtist. The participant felt a pseudonym resembling a digital username that combined the two most important parts of their identity—Gay and Artist—represented them more than a human name the researchers would randomly choose for anonymity purposes. In addition, respecting pronouns when referring to participants during all stages of the research, including the final write-up, can also be affirming to aspects of their identities and experiences that were not previously known. The practice of using correct pronouns holds space within the research space and in writing during

Researching hate crime with LGBTQ+ individuals  429 the research write-up for queer identities to be validated and acknowledged, and therefore the victimisation that they have experienced within these identities can be heard with empathy and care. Adopting empathy at the heart of qualitative research of this nature is the ultimate quest in providing a caring research space; ‘that quest is to be able to hear, feel, understand, and value the stories of others and to convey that felt empathy and understanding back to the client/storyteller/participant’ (Gair, 2012, p.134). When conducting quantitative research, such as using surveys or questionnaires, discrete categories for identity markers such as gender (male/female), sexuality (gay/straight/bi/other), and race (White/Black/Asian/Other Minority Ethnic) often help researchers group individuals together to look for generalised larger patterns. However, these discrete categories can unintentionally miss or erase a wide spectrum of identities and thus invisibilise the violence directed towards these identities. Providing blank/void spaces to allow respondents to selfdeclare their identities grants autonomy and can provide further data on specific response rates among certain demographics and can show outliers that may otherwise be missed. For example, a survey I conducted on levels of trust in the police among LGBTQ+ people (Pickles, 2019) showed that a number of respondents (7 per cent) identified as queer rather than lesbian, gay, or bi—an identity that has significant political and historical differences (Duggan, 1995)—and that over double the number of trans non-binary respondents (12 per cent) took part in the survey than trans binary (trans men or trans women) respondents (5 per cent). Had I simply prescribed identity categories (trans man/woman) or just (trans/cis), this data would have been lost and these identities and experiences would have been erased due to the researcher assuming a binary view of gender. Caution must be given, however, in assuming that simply capturing the valid experiences of hate victims through the research process is sufficient to support participants. Wyles, O’Leary and Tsantefski (2023) provide a comprehensive scoping review of studies in trauma and found conflicting accounts of healing vs. re-traumatisation through the research process. Many studies under their review indicated that some participants find bearing witness to their pain and articulating their experiences of trauma can be healing as they are able to make sense of their experiences and release their emotions surrounding their trauma in a cathartic way. However, other studies, for example, Brounéus (2008), challenged the assumption that ‘truth telling’ was healing in and of itself, as several participants in her Rwandan study could not continue their interviews due to the psychological distress it was causing. Their scoping review ultimately found mixed evidence, as some survivors of trauma experienced the public retelling of their trauma as distressing, re-traumatising, and in some cases abusive by leaving them feeling vulnerable and victimised. Thus, social scientists seeking to research harm, pain, and trauma (such as that potentially experienced by hate crimes) have a serious duty of care. When interviewing LGBTQ+ participants, or indeed any participants who are navigating traumatic experiences of oppression, violence, and pain, the researcher must take care not to exploit the participant for the purpose of gaining their ‘story’ for the research project. Heap and Waters (2019, p.220) advocate that, ethically, the project should grant ontological authenticity—in other words, ‘whether the research participants, be that individuals or groups, gain a better understanding of the social world through taking part in the research project … with an improved “conscious experiencing” of the world they live in.’ Involving participants from the outset, providing a loving and supportive space, demonstrating compassion, consistently checking in with participants throughout the interview process, and validating and ‘hearing’ their experiences are humanistic approaches to the interview process and can aid in making

430  Handbook of sensitive research in the social sciences the research person-centric and align both research and participants with the same goal of producing research by and for the communities taking part. From the perspective of the researcher, conducting socially sensitive, criminological research such as LGBTQ+ hate crime can also be also an emotionally laborious process and potentially traumatic experience. Social researchers who participated in Waters, Westaby, Fowler, and Phillips’ (2020) study maintained that they felt huge pressure from the research process to ‘do justice’ for their participants and viewed the responsibility of giving voice to participants as an important part of being a researcher. Participants also expressed feeling significant guilt in exploiting their participants and engaged in continuous and extensive reflexive practice and conversations with peers to navigate the power dynamics involved between researcher and participant to prevent exploitation. They advocate for a research culture that is literate in expressing, discussing, and critiquing the emotions that arise when conducting research and the emotional displays used when in contact with participants so that researchers are supported in conducting ethical research on sensitive issues such as LGBTQ+ hate crime. Otherwise, researchers can experience emotional fatigue and burnout from researching such highly sensitive and emotionally laborious topics (see also Chapters 1 & 3 in this volume). This risk is perhaps even more pronounced on topics like hate crime—when participants have experienced violence towards and because of their identity—and when the researcher shares the identity that has been victimised. For instance, if an LGBTQ+ researcher conducts research on LGBTQ+ hate crime with LGBTQ+ participants, there is potential for the researcher to take on the trauma of this pain vicariously. It could be argued that ‘vicarious victimisation may occur where an individual, who shares the primary victim’s identity, takes on their experiences through a therapeutic relationship as a negative consequence of the emotional labour performed’ (Pickles, 2021, p.396). Ultimately, it is in the interest of both the researcher and the participants, when researching anti-LGBTQ+ hate crime, to provide an affirmative and sensitive space in which pain can be expressed and cared for, where emotions can be reflected on and addressed honestly, where the emotional needs of participants and researchers can be examined and managed, and where both participant and researcher can coconstruct a space in dialogue that is safe and beneficial for both parties to explore the realities of hate victimisation.

CONCLUSION AND FUTURE DIRECTIONS Conducting socially sensitive and conscious research with LGBTQ+ people who have experienced hate crimes is a particularly difficult and challenging, but rewarding endeavour. There are a number of factors and avenues that are advisable for the researcher to consider before undertaking hate crime research, in order to sensitively and ethically carry out the research and minimise harm to both the participants and researchers. This chapter has outlined the broader nature of hate crime research from both qualitative and quantitative dimensions. The particular focus of this chapter has been centred around a victimological concern over how to sensitively, professionally, and ethically research victims with the aim of equipping researchers with the emotional literacy required to provide a caring and supportive space that is of overall benefit to the participant. I have argued that community networks are how the harms of hate transmit to the wider LGBTQ+ community from the initial victim and demonstrated

Researching hate crime with LGBTQ+ individuals  431 that these community networks can be targeted and snowballed from, to distribute recruitment materials for both quantitative and qualitative research. Hate crime is a relatively adult-centric concept and the majority of research has overlooked the perspectives of young people (under-18s) in its scope. This chapter has outlined the specific ethical hurdles researchers can face when attempting to include young people in hate crime research but has advocated for methodological strategies that can satisfy ethics panels and include young people in hate crime research. Traditional mechanisms for gaining consent for young people require gaining consent from their parents or guardians. However, with young LGBTQ+ people, revealing their sexuality or gender to parents who are potentially unsupportive carries the risk of ‘outing’ them and placing them in a more risky and harmful position. Strategies to overcome these barriers and minimise risk include requesting that a suitable gatekeeper (teacher, youth worker, service worker) act as a guardian in lieu of parents, and working with the researcher to assess the Gillick competency of the young people being recruited into the research. Whether recruiting young or adult LGBTQ+ people, the role of the researcher is to hear and gather the voices of participants and, in effect, bear witness to their experiences of victimisation. When gathering experiences that are potentially painful and traumatic, considerable care is required to provide an emotionally literate and humanistic space for participants to reveal their stories. There is a risk of retraumatising participants if care is not provided; participants need to matter beyond their stories, they need to matter as individuals. Continual reflection and introspection are advised to additionally protect the researcher, as researchers can also be affected by bearing witness to stories of trauma and can feel a significant amount of responsibility to ‘do justice’ to the participants. LGBTQ+ researchers may potentially be at enhanced risk of experiencing the victimisation of participants vicariously, through their shared identity with the victim. Future hate crime research with LGBTQ+ individuals could aim to be inclusive of young people so that the reproduction of adult-centric frameworks of hate crime can be avoided. Further, reflective commentaries from LGBTQ+ scholars on the impact of researching hate crime with LGBTQ+ individuals can be helpful in developing more robust guidance for new and emerging scholars. These are largely lacking within the field but are an important contribution for future scholars and researchers in developing introspective and reflexive skills to support their emotional wellbeing. The ultimate priority is to help make a better world for LGBTQ+ people through our research. Raising awareness of their experiences of victimisation helps us see and hear the lived reality of anti-LGBTQ+ hate crime and develop tools to advocate for a more just world.

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29. Que(e)ry-ing the nexus of vulnerabilities: the sensitive nature of research into LGBTQ+ and CALD survivor experiences of intimate partner violence Alex Workman, Angela Dwyer and Tony Rossi

INTRODUCTION Sensitive research is understood broadly as research that has potential consequences or implications for the participants in the research process or output or the class of individuals the research represents (Dickson-Swift et al., 2007; Liamputtong, 2007; see Chapter 1 in this volume). When applying this definition, it can be easy to argue that all research becomes sensitive. However, some research projects may potentially be more harmful than others. Simple ‘market’ research, for example, is a relatively mundane process of ‘discovery’. A person’s political views, identity, or views about education or health are potentially far more provocative and open to risk as a participant (Giambona et al., 2017). Although most scholars are most likely driven by the mantra ‘do no harm’, the consequences of what is understood as sensitive or even controversial may do more harm than good. It can potentially threaten those who are or have been involved in the research, including the researcher(s) and the participants. Rossi, Rynne, and Nelson (2013) have written about this in detail when conducting research in Australian Indigenous communities as white (and privileged) scholars. This chapter seeks to address some of the challenges of sensitive research by focusing on some socially sensitive topics of ntimate partner violence (IPV) through the lens of two equally sensitive and vulnerable communities, Lesbian, Gay, Bisexual, Transgender, Queer or Questioning Plus communities (herein LGBTQ+), and Culturally and Linguistically Diverse communities (herein CALD). In Australia, CALD is used as a potentially clumsy, catch-all phrase to describe a shared experience of people who are first, second, and third-generation migrants, refugees, asylum seekers, and temporary visa holders, including students and spousal visas (Pithavadian & Bhat, 2023). While the definition of CALD is limiting, it does at least enable researchers to problematise those who do not fluently speak and comprehend English. At the nexus of these two identities (LGBTQ+ and CALD), multiple intersecting challenges can influence how they engage with services and institutions based on one or more parts of their identity. For example, they may encounter racism in some circumstances, or they may encounter cissexism, heterosexism, homo/bi/transphobia, cis heterosexism, and genderism (Panter, 2018). The complexity of this type of research work cannot be overstated. For example, when multiple identities intersect, research participants may be inclined or even coerced to prioritise specific parts of their identity when, in reality, all parts of a person’s identity are equally important. Their interpretation of these experiences may be informed by what DiAngelo (2018) calls salient identity, where the person may determine which part of their identity is 435

436  Handbook of sensitive research in the social sciences being discriminated against based on which identity is stronger (race/ethnicity/gender/sexuality, and so on). Doing research that focuses on the lived experiences of marginalised communities, when done well, offers valuable insights into the lived experiences of less visible people in policy, awareness, and advocacy (Shevlin & Rose, 2022; Wilson et al., 2018). Notably, such research seeks to ensure that people’s lives are improved through their participation in social change. Many marginalised communities of note are considered in the realm of sensitive research participants, such as people living with disabilities, Indigenous peoples, and the diversity of lived experiences that come with age. These groups are often considered vulnerable, and while it is beyond the scope of this chapter, it is important to acknowledge the breadth of sensitive research groups and how there may be shared experiences due to their vulnerabilities. Lastly, it is important to acknowledge that other vulnerabilities can compound with LGBTQ+ and CALD identities that, while beyond the scope of the chapter, also play into the sensitivities of research.

INTIMATE PARTNER VIOLENCE (IPV): BACKGROUND Although Australia is a signatory to human rights frameworks that emphasise a focus on the rights and equity of marginalised communities, these communities often remain on the periphery of, or omitted from, policy development and advocacy work (Robards et al., 2020; Low & Pallotta-Chiarolli, 2015). IPV is one such issue that remains peripheral, with Australia not even adopting IPV terminology. Instead, Australian policy utilises somewhat limited family violence terminology to describe the experiences of those living in a violent relationship. The limits of definition can create challenges. Family violence terminology places a strong and exclusionary emphasis on women and children being the only victims. We should not be misunderstood here; safeguarding the wellbeing or even survival of women and children is critical, and the language used by organisations such as Our Watch (2019) and White Ribbon (2019) captures this criticality. However, the limits of the terminology of family violence may well come to exclude other forms of relationship violence. The Royal Commission into Family Violence (2015) recommended stepping away from IPV terminology. One must acknowledge, however, that such action potentially creates a ‘liminal space’ for LGBTQ+ victims. Liminality refers to a transitional state where, in this case, victims are neither fully recognised nor entirely excluded. Acker (1992), for example, argued that using gender as an identifier in violence is problematic, and Renzetti (1992) recommended the inclusion of lesbian IPV in the discourse of female violence. This liminal definitional space around IPV creates an invisibility around the true extent of the problems faced by survivors of IPV. Crenshaw (2016) argued that inclusive representations of social justice issues are imperative. This is because survivors of IPV relationships who are non-white, non-heterosexual, transgender, gender diverse, and disabled cannot recognise their experiences as violence because they do not see themselves in policy representations. Workman (2019) has previously sought to address the extent of inclusivity of Australian public discourses on LGBTIQ+ experiences of IPV. Workman (2019) measured the extent to which policy, advocacy, media, legislation, and funding upheld human rights obligations for this community and found that survivors who were not white, cisgender, heterosexual,

Que(e)ry-ing the nexus of vulnerabilities  437 non-disabled women, having violence perpetrated by white, cisgender, heterosexual, non-disabled men, were excluded and dehumanised. This invisibility is further compounded when researching and documenting these issues. For instance, if survivors do not recognise themselves represented in Australian public awareness campaigns around IPV relationships, they are less likely to participate in research about these issues. Hence, LGBTQ CALD IPV is made sensitive because of the silences surrounding this issue in broader Australian discourses (see Chapter 32).

THE NEXUS OF LGBTQ+ AND CALD IDENTITY The axes of a person’s identity (or subjectivity) are multiple and might include race, ethnicity, gender, sex, sexuality, disability status, religious status, social class, education levels, health outcomes, and geographical location (Wilson et al., 2018). Crenshaw (1991) refers to this as ‘intersectionality,’ a term she coined to describe the overlapping and interdependent systems that can lead to discrimination or disadvantage, which in turn may lead to poorer institutional outcomes (Potter, 2015; see also Chapters 8 & 26). Social justice outcomes are heavily influenced by intersectionality, again pointing to differential outcomes (Ijoma, 2018; Veenstra, 2013; Simpson & Helfrich, 2014). Institutional disadvantage through marginalisation also leads to the likelihood of poorer health, poorer wellbeing, and the potential for negative engagement with the criminal justice system, again largely because of policy and legislative absence (Ball, 2013; Workman, 2019). For people who identify as CALD, ongoing challenges persist around their multicultural lived experiences in the representation and advocacy of IPV research. Simpson and Helfrich (2014) found that ambiguous policy had a profound effect on Black queer women’s experiences of reporting issues of IPV. Morrison (2006) contended that the need to consider more multicultural understandings in how IPV is discussed is crucial for broader inclusivity of all experiences. Nevertheless, the lack of diversity in representing IPV through an intersectional lens contributes to the wide acceptance of intersectional IPV as not being ‘a real issue.’ A reconsideration of this position is warranted. Despite the multiple intersections of race, ethnicity, and LGBTIQ identity, individuals who sit along such intersections demonstrate remarkable resilience in surviving IPV. It is a critical time to acknowledge the sensitivity of this research yet not shy away from undertaking it. By doing so, the opportunities for targeted resources that challenge intersectional disadvantage are heightened. In particular, it is important to acknowledge the concurrent prejudices and societal barriers that may deter this diverse group from engaging with police officers, shelters, and other DV services (Donovan & Barnes, 2020). Formby (2017) found that CALD LGBTIQ people, particularly those of Asian and Black identity, face significant cultural barriers. Some barriers manifest from racism, homophobia, transphobia, and biphobia that reduce opportunities for acceptance from their immediate social supports and local institutions. Asquith et al. (2019) found that further definitional complications of CALD and LGBTQ+ arise because there are more than 500 terms used to define sex, gender, and sexuality, with many cultures not actually using the conventional ‘Western’ terminology. This further adds to the sensitive nature of research, as conventional labels invariably deter participants from whom it is most crucial to hear. Asquith (2015) also contended that prejudicial attitudes towards diverse experiences may exacerbate or silence the problem while they focus on honour-based

438  Handbook of sensitive research in the social sciences violence. These attitudes, often rooted in cultural misunderstandings, can dismiss the experiences of diverse people and rationalise violence as normal. Societal attitudes not only serve to define some research as ‘sensitive’; they also act as a barrier to participating in research, even when participant insight would be invaluable (Liamputtong, 2007). Consequently, recruitment into research projects is compounded by sensitivity, intersectionality, and notions of what we call here ‘relative oppression’; that is, which groups might consider themselves the more oppressed and, therefore, more deserving of having their voices heard (Negrin et al., 2022). Due regard for people’s wellbeing is essential to ethical research. Sensitive research has the potential to have negative impacts on the very participants researchers need to hear from. The following sections identify key examples as to why recruitment and other forms of people’s identity act in a way that reinforces LGBTQ+ CALD research is sensitive. Importantly, sensitive research must consider the nature of the relationship between the researcher and the researched. The gravity of this matter warrants close attention.

STATIC FACTORS INFLUENCING LGBTQ CALD IPV RESEARCH: CONSIDERING THE POSITIONALITY OF THE RESEARCHER HETEROSEXUAL/LGBTQ+, WHITE/CALD The term positionality describes an individual’s worldview, position in the research task, and social and political contexts (Liamputtong, 2010, 2023; Darwin Holmes, 2020; see also Chapter 27). It is influenced by individual values and beliefs shaped by political allegiances, religious faith, gender and sexuality, historical and geographical location, ethnicity, race, social class and status, (dis)abilities, and so on (Helve, 2016). As Taylor and Dwyer (2015a) highlight, the researcher’s position in proximity to the research may present substantive challenges when conducting research with, from, or who maintain diverse positions. While research concerning human subjects undergoes review by university ethics committees, other boundaries not observed by ethics committees are also present, and they become apparent to researchers once a project has commenced. Rossi, Rynne and Nelson (2013) noted this in their work with Indigenous Australian communities. Taylor and Dwyer (2015b) also noted that other agents such as service providers, ally networks, and participants, can also create barriers, often for the purpose of safety. Similarly, during recruitment, researchers may experience a range of attitudes that informally police access to queer people. In some cases, service providers and university ally networks may outright reject requests for assistance with recruitment for the studies. Service providers may also request to meet researchers and, after the disclosure of heterosexuality, regardless of whether the person is an ally or not, rather than a member of LGBTQ+ communities, the communication (virtually via Zoom, email, or phone calls) may cease. As a White person, it is vital to acknowledge the challenges that people of colour may face in disclosing their experiences, particularly with issues such as racism. Even having an ‘ethnic’ or ‘Western’ sounding name can deter them from considering participation (Girma, 2019; Broesch et al., 2020). Eddo-Lodge (2020) underscored this in her book Why I am No Longer Talking to White People about Race, pointing out that when the subject of race enters into conversation, White people are often defensive and shut down these topics with comments such as

Que(e)ry-ing the nexus of vulnerabilities  439 ‘I do not see colour’. While these comments may be well-intentioned, they fail to capture the complexities of race’s implications in the social realities of all people. The challenges faced by diverse individuals in research can be further exacerbated in interracial relationships. For instance, a CALD person may be in a relationship with a White person or another CALD person, and their skin colour differences may be used against them. This means that if a person is darker-skinned, they may be seen or treated as the more ‘dangerous’ person (Nussbaum, 2019). Mapedzahama and Kwansah-Aidoo (2017) highlight this as the unspoken burden of Black people and how a person’s Blackness is often weaponised against them during points where race is, or the perception of race can be, mobilised for effect.

HOW HISTORY INFLUENCES THE SENSITIVITY OF RESEARCH The following section unpacks how history influences and creates challenges for meaningful participation. It is vital to reflect on how human experiences are individual and unique. For the LGBTQ+ community, Australia has often had an uneven and, at times, problematic relationship with people commonly referred to as gay. It was not until 1997, after the Supreme Court intervened, that homosexuality became entirely legalised. It was much more recently (2017) that the Marriage Act of Australia was amended to include same-sex marriages. In Western Sydney, it is important to note that the majority of the ‘no’ votes came from this geographical region (Rogers, 2017). Additionally, two of the authors of this chapter also reside here. The majority of the ‘no’ votes suggest that there is a hierarchy to the needs of groups, as Western Sydney is considered a melting pot of ethnically diverse people (Rogers, 2017). As such, due to the high CALD population, it can be suggested that arguably ‘oppressed’ people have chosen to ‘oppress’ others (Freire, 1970). Recently, the discrimination against LGBTQ+ people was reinforced in the west of the country when Cumberland City Council (another highly CALD population area) voted to ban books on same-sex parenting from their local libraries (Given & Polkinghorne, 2024). While this was eventually overturned, it reinforces that the public perception of LGBTQ+ remains contentious, making intersections such as CALD and LGBTQ+ even more sensitive. In some other countries and cultures, homosexuality remains suppressed and illegal. It is crucial to address these historical factors that will always impact research participation, as they pose significant barriers to the inclusion of diverse communities, even in so-called liberal democracies. Despite significant gains in inclusion policies in Australia, the management of gay hate crimes and murders has been described as weak and even inept by the NSW police, with unsolved homicides continuing until 2010 (Lewis, 2023). Moreover, NSW appears to have the worst rights and protections for the LGBTIQ community (Lewis, 2023). This presents as challenging for the LGBTQ community when issues of violence are concerned within intimate relationships. History has influenced diverse people’s willingness to participate in research due to fears of being pathologised (Hegarty, 2017). Pathologising refers to the intentional labelling and treatment of identifying gender, body, presentation, and practice as abnormal or deviant (Ansara & Hegarty, 2014; Riggs et al., 2015; Rogers, 2017). These act as forms of microaggressions commonplace within everyday interactions (Kaddour et al., 2023). Through the pathologising experiences queer people face, there appear to be barriers to meaningful cultural change. For example, Bartlett et al. (2022) argued that queer identities remain pathologised, subordinating

440  Handbook of sensitive research in the social sciences the experiences of this community when the discriminatory attitudes themselves should be pathologised and rejected, such as homophobia, and not the people who are LGBTQ+. Unfortunately, this reinforces the dominant ideology of Australia (and other places around the world) as one that is simultaneously (and paradoxically) progressive and conservative. As such, being pathologised influences the sensitive nature of research participation. It is, therefore, imperative to advocate for more inclusive research practices that respect and value the experiences of all individuals. Contemporary Criminalisation of Queer People and the Implications for Meaningful Research Buist and Lenning (2016) noted that the historical implications of criminalising queerness remain deeply troubling for the LGBTQ+ community today. Reid (2015) argued that language has consistently been weaponised in legal domains and continues to stigmatise and persecute same-sex relations. Human Rights Watch (2023a) found at least 67 countries have national laws criminalising same-sex relations between consenting adults. At least nine countries have national laws that criminalise forms of gender expression that target transgender and gendernonconforming people. Russia has recently determined that international LGBT movements are in the same category as violent extremists (Human Rights Watch, 2023b). The rising pushback against the acceptance of LGBTQ+ people globally may significantly impact the number of people willing to speak up against the issues they face. Hence, queer bodies remain ‘disciplined’ (Foucault, 1975) despite social progress in some parts of the world. What Form of Discrimination are Participants Experiencing? A Question of Salience It is important to note that LGBTQ+ CALD-identifying people may experience unique forms of discrimination. However, they may be forced to choose or may not resonate with forms of discrimination based on their identity. This concept, known as ‘salience,’ refers to the degree to which an identity is perceived as relevant or important in a particular context. For example, a person may perceive their discrimination as primarily based on their race or their sexual orientation, but not both. This form of salience may influence sensitive research for a variety of reasons. As identified earlier, when the question of same-sex marriage arose, many CALD people, especially in Sydney, an ethnically diverse area of Australia, were supporters of the ‘no campaign,’ although this connects more to religious identity. Pithavadian and Bhat (2023) found that some cultures consider LGBTQ+ people’s identities unacceptable, although these cultures must navigate their cultural persecution. Asquith et al. (2019) found that CALD queer people who come out are more likely to be exposed to the risks of family violence, and this can be challenging if not dangerous if they are in an IPV relationship; outing itself can be understood as a form of violence (Workman, 2023). At the nexus of these identities, individuals can experience physical violence, family exile, forced marriage, homicide, and conversion therapy. This is sometimes called intra-familial hate crime (Asquith, 2015). These crimes are not captured under Australian law, as the Australian definition of family domestic violence focuses on domestic partner violence, older people or child abuse (Asquith et al., 2019). Additionally, due to the rigid understandings of these identities, one may not recognise their experience as violence. This can only be described as discriminatory.

Que(e)ry-ing the nexus of vulnerabilities  441 DiAngelo (2018) found that this brings into question the salient identity of a person, which allows them to determine which identity they feel is more likely to experience discrimination. In Australia, racism is swiftly dealt with, often with substantive public rebuke (Tan, 2023). Yet, anti-LGBTQ+ attitudes are seemingly taken less seriously. It is reasonable to assume, then, that this takes the shape of a hierarchy of discrimination. Recent commentary from the Australian Human Rights Commission (Tan, 2023) suggested that racism is the biggest social issue in Australia. This may or may not be true. Regardless, it unfortunately reinforces a discrimination hierarchy. Those who exist on intersecting axes of disadvantage or discrimination may find this perplexing. Cultural safety suggests that no part of a person’s identity is denied, attacked, or assaulted (Workman et al., 2023), yet, based on these complex issues in Australia, these communities, when they intersect, are forced to choose which form of discrimination they experience, which appears to suggest that it is easier to argue racism than anti-LGBTQ+ discrimination. The need for further research into this area is urgent and crucial, and it is being undertaken by the authors of this article.

RESEARCH PARTICIPANT CONCERNS The following section identifies some observations made by the primary author during the data collection of his doctoral thesis (Workman, n.d.). Participants of this study identified as CALD LGBTQ+. They spoke to some varying challenges they have with not only being a research participant but also speaking to their experiences as survivors of IPV. While they noted that research is essential, they also took an altruistic approach to participating and sharing their stories. The preceding section highlighted what the literature has identified as challenges with vulnerable participants that exacerbate sensitive research in my observations during the data collection of my thesis. As such, this section is written reflectively. Protecting Their Identity Based on a multitude of factors, participants may rightfully have concerns that their identity can be ascertained based on events they disclose during an interview. One participant in a project led by the author noted that, based on the smaller population their home state has, they had concerns that they may be identified based on different parts of their story. While researchers can do their utmost to protect a person’s identity, there remain genuine risks of being identified (Giordano et al., 2007). However, this also is reflective of how Australia does not include the experiences of LGBTQ+ or CALD people in discussions of violence. As such, when studies of this nature are conducted, the pool of participants continues to be limited based on age, geographical location, employment, education levels, income earning, and any other factors that may link a person to the experience (Workman, 2023; Pithavadian & Bhat, 2023). Notably, in Australia, there is a hyperfocus on a person’s racial identity that may impact their capacity to connect to LGBTQ+ related issues, as they may fear being outed (Asquith, 2015). It is critical that any research team working in sensitive fields implements stringent confidentiality protocols, including anonymising all data, storing it securely, and, where digital, behind significant firewalls, and using non-identifying pseudonyms in all published material.

442  Handbook of sensitive research in the social sciences Reliving the Experience Another concern is that when people participate in studies that involve disclosing their experiences of violence, they may relive the experience. While studies may have inbuilt protections to safeguard participants and the researcher, there is always the risk of opening up ‘old’ wounds. For example, in the first author’s current study, some participants had only ended their violent relationships a few months prior to participating, so while they had left the relationship, their experience was quite raw; however, some participants’ experiences of violence were from years previously (two or more), and they were able to distance themselves from their experience more objectively (Workman, n.d.). Importantly, this does not mean the person who had left the relationship a few months prior is any less critical; the reliving of the experience and the retelling process can be uniquely challenging for people depending on how much time and space there is between their participation and the end of the relationship. To mitigate this, our study includes regular check-ins with participants, access to counselling services and a comprehensive debriefing process after the study is complete. Legitimacy of People’s Intentions What happens after the research is a point of concern raised by participants, and rightly so. In Australia, there is a culture of silence surrounding the belief that anyone can be a victim and anyone can be an offender of IPV. Naturally, if people fall outside of the dominant narrative of how Australia talks about violence, they may not connect their experience to one that is unhealthy and violent. Given Australia has an inability to provide equitable representations of the full spectrum of victims, they may feel there is no point in sharing their experience because nothing may change. So, whilst researching marginalised communities is a worthy endeavour, the domestic violence industry has significant control over how the issue is talked about, who is worthy of being validated as a victim, who is worthy of having service and support access, and who is more entitled to be seen as a victim. These hierarchies do influence how people resonate and connect to issues of social injustice. Nevertheless, violence does not discriminate, and given the gendered narrative and understanding of domestic violence that Australia clings so desperately to, the research could easily be dismissed, downplayed, and trivialised. While trying to act progressive and inclusive, Australia merely maintains an illusion of inclusion. It is crucial to recognise the potential impact of this research on policy and advocacy and the urgent need for a more inclusive and equitable approach to addressing domestic violence.

SETTING THE STAGE: THE CRUCIAL IMPORTANCE OF RESEARCHING LGBTQ+ CALD PEOPLE This chapter emphasises the crucial role of the researcher in understanding the sensitivity of queer intersectional research by reflecting on both the positionality of the researcher and that of the participant. It acknowledges that there are many challenges beyond those discussed; nevertheless, the purpose of this chapter is to highlight elements researchers must be aware of and to reflect on some of the challenges based on researchers’ experiences in this space. The authors maintain that regardless of the barriers associated with researching LGBTQ+

Que(e)ry-ing the nexus of vulnerabilities  443 CALD people and IPV, while it is sensitive research, it is also vital research. Recognising the intersectional challenges that may hinder a person’s capacity to speak to their experiences is necessary for furthering social change. The authors consider these elements fundamental for consideration moving forward: 1. The role of the researcher: understanding positionality in the context of LGBTQ+ CALD research. Historical influences of the communities you will research and how they may hinder a person’s willingness to engage. 2. The dangers of identifying a person through their participation in the study, given the complexities at the nexus of CALD and LGBTQ+ identity, include both outing and intrafamilial hate crimes. Notably, since Australia lacks recognition of these issues in legal domains. 3. A hierarchy of discrimination forces people to choose how they are being discriminated against, which privileges some parts of a person’s identity and dismisses others.

CONCLUSION AND FUTURE DIRECTIONS While conducting sensitive research is not without its challenges, it holds the potential for meaningful social change to better the lives and experiences of those who would benefit from it the most. The historical influences of how vulnerable and marginalised groups impact how people trust institutions and, by extension, representatives of institutions. Issues such as racism, heterosexism and cissexism continue to act in ways that halt participation for LGBTQ+ CALD people. This also underscores the importance of positionality for the researcher. Regardless of the meaningful research researchers may produce, building trust and rapport are essential; however, as this chapter has identified, this must be done with consideration of the areas identified. Sensitive research should not be avoided, and all research comes with elements of risk, yet when done with consideration of the lived experiences of people in mind, it can produce outcomes that have a real impact on policy and social processes for those who exist within vulnerable and marginalised groups. Importantly, considering how vulnerable and marginalised people are discussed and represented in the public sphere is a crucial place to start. Sensitive research is challenging and can also be confronting and difficult, but that does not mean researchers should avoid the task of researching populations due to sensitivities. Sensitive research can be rewarding as it allows for people whose voices may not typically be considered to be validated through their participation. All people, regardless of their identity, personal circumstances, and capabilities deserve a voice, and better understanding these factors is why conducting sensitive research must remain a priority.

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446  Handbook of sensitive research in the social sciences young people. International Journal of Environmental Research and Public Health, 17(21), 8104. https://doi​.org​/10​.3390​/ijerph17218104. Rogers, D. (2017). I’m a proud Westie and I voted yes. Don’t blame western Sydney for its No vote. ABC News. 15 November, accessed 1 October 2024 at https://www​.abc​.net​.au​/news​/2017​-11​-15​/same​-sex​ -marriage​-the​-tale​-of​-two​-sydneys​/9153436. Rossi, A., Rynne, S., & Nelson, A. (2013). Doing Whitefella research in Blackfella communities in Australia: Decolonizing method in sports related research. Quest, 65(1), 116–131. https://doi​.org​/10​ .1080​/00336297​.2012​.749799. Shevlin, M. & Rose, R. (2022). Respecting the voices of individuals from marginalised communities in research—“Who is listening and who isn’t?” Education Sciences, 12(5), 304. https://doi​.org​/10​.3390​ /educsci12050304. Simpson, E. K. & Helfrich, C. A. (2014). Oppression and barriers to service for black, lesbian survivors of intimate partner violence. Journal of Gay & Lesbian Social Services, 26(4), 441–465. https://doi​ .org​/10​.1080​/10538720​.2014​.951816. Tan, C. (2023). Whatever the voice vote’s result, Australia has a racism problem we must tackle. humanrights​.gov​.a​u, 6 October, accessed 1 October 2024 at https://humanrights​.gov​.au​/about​/news​/ opinions​/whatever​-voice​-votes​-result​-australia​-has​-racism​-problem​-we​-must​-tackle. Taylor, J. & Dwyer, A. (2015a). Queer youth research/ers: a reflexive account of risk and intimacy in an ethical (mine)field. In Kelly, P. & Kamp, A. (eds), A Critical Youth Studies for the 21st Century. Brill. Taylor, J. & Dwyer, A. (2015b). Sexualities and sensitivities: queer(y)ing the ethics of youth research in the field. In Baker, S., Robards, B., Driver, C. & Buttgieg, B. (eds), Youth Cultures and Subcultures: Australian Perspectives. Ashgate. Veenstra, G. (2013). The gendered nature of discriminatory experiences by race, class, and sexuality: A comparison of intersectionality theory and the subordinate male target hypothesis. Sex Roles: A Journal of Research, 68(11-12), 646–659. https://doi​.org​/10​.1007​/s11199​- 012​- 0243​-2. White Ribbon Australia (2019). White Ribbon Australia, accessed 1 October 2024 at https://www​ .whiteribbon​.org​.au/. Wilson, D., Heaslip, V., & Jackson, D. (2018). Improving equity and cultural responsiveness with marginalised communities: Understanding competing worldviews. Journal of Clinical Nursing, 27(19–20), 3810–3819. https://doi​.org​/10​.1111​/jocn​.14546. Workman, A. (n.d). LGBTQ CALD experiences of Intimate Partner Violence, survival and resilience. Unpublished Doctoral Study, under preparation: Western Sydney University. Workman, A. (2019). Are Australian public discourses on intimate partner violence LGBTIQ inclusive?, accessed 1 October 2024 at https://researchdirect​.westernsydney​.edu​.au​/islandora ​/object ​/uws​:52888​ /datastream​/ PDF​/view. Workman, A. (2023). Intimate partner violence and global public health. In P. Liamputtong (ed.), Handbook of social sciences and global public health (pp.1411–1428). Springer, Cham. . https://doi​ .org​/10​.1007​/978​-3​- 031​-25110​-8​_97. Workman, A., Dune, T., & Ball, M. (2023). Gender and sexuality diverse people. In A. Workman, R. Kaddour, & P. M. Griffin (eds), Culture, diversity, and criminal justice towards culturally safe criminal justice systems. New York: Routledge. Yates, S. (2020). Gender, context and constraint: Framing family violence in Victoria. Women’s Studies International Forum, 78(1). https://doi​.org​/10​.1016​/j​.wsif​.2019​.102321.

30. Researching sensitive issues with men: some reflections Martin Robb

INTRODUCTION This chapter explores some of the factors that come into play when researching sensitive topics with men. It argues that there are issues specific to sensitive research with men, arising from the nature of masculine identities and the ways that masculinity ‘works’ in the research process (see Chapter 31 in this volume). I have been researching issues of masculinity, identity, and care for more than two decades. Beginning with small-scale studies of men working in early years childcare (Robb, 2001) and fathers involved in the care of their young children (Robb, 2004a, 2004b), I then led a major research study on young men using social care services (Featherstone et al., 2017; Robb et al., 2017a; Ward et al., 2017) and a study exploring young masculinities and wellbeing (Robb & Ruxton, 2017; Robb et al., 2017b). More recently, I have been engaged in a research project exploring the experiences of bereaved fathers (Jones et al., 2025). To a greater or lesser extent, all of these studies have involved researching ‘sensitive’ topics, including issues of gender identity, intimate relationships, and grief and loss with men. Drawing on two case studies from my experience as a researcher, this chapter will discuss both the challenges of researching sensitive topics with men and some strategies that may be helpful in ensuring that such research is effective and productive.

MEN, MASCULINITY AND SENSITIVE RESEARCH The chapter takes a psychosocial approach to understanding both gender identities and the research process. Psychosocial research studies the ways in which subjective experience is interwoven with social life, maintaining that subjective experiences ‘cannot be abstracted from societal, cultural and historical contexts, but nor can they be deterministically reduced to the social’. Instead, social and cultural worlds are ‘shaped by psychological process and intersubjective relations’ (Association for Psychosocial Studies, n.d.). A psychosocial approach to gender shares with writers from a sociological perspective, such as Connell (1995), the notion that masculinities and femininities are plural, socially situated, and reproduced in social interactions rather than being static or biologically or psychologically predetermined. As well as emphasising that masculine identities are diverse rather than singular and insisting on the term ‘masculinities’ (plural) rather than ‘masculinity’ (singular), Connell is also responsible for introducing the term ‘hegemonic masculinity’ to denote the ways in which specific notions of what it means to be a man come to dominate in particular social settings, reinforcing power relations between men and women, and between different groups of men. However, a psychosocial perspective is also keenly aware that, to 447

448  Handbook of sensitive research in the social sciences quote Redman (2005, p.535), ‘the various practices through which boys and young men “do” masculinity are saturated with unconscious fantasy, intersubjective communication, and inextricably blurred boundaries between self and other.’ It can be argued that this applies to men of all ages, and not just young men. One of the specific contributions that a psychosocial approach can make to understanding the way masculinity operates in the research process derives from the work of psychoanalytic feminist writers, such as Jessica Benjamin, who argues that masculinity, particularly in the contemporary Western world, is a defensive structure achieved via distancing from the feminine and a ‘repudiation of femininity’ (Benjamin, 1998, p.136). Similarly, Nancy Chodorow (1978) describes masculinity as a defensive and compensatory construction based on the negation of the mother. This defensiveness may be particularly evident when an individual’s masculinity is felt to be under threat, for example, in a research interview or focus group when sensitive issues are being explored. One of the ways in which masculine identities, understood from a psychosocial perspective, can shape research with men on sensitive issues is the social expectation that men will be unwilling or unable to share their feelings openly in public. Arguably, ‘common sense’ assumptions about gender differences have been given academic credibility by the work of researchers such as Gilligan (1982), who argues that women and men have different ‘moral voices,’ with the former focused on relationships and care and the latter more concerned with questions of rights and justice. The work of Gilligan and other ‘difference feminists’ has given rise to the developing field of feminist care ethics (Held, 2005; Kittay, 1999). Moreover, developments in neuroscience have lent a degree of scientific credibility to conventional assumptions that women ‘are better able to connect feelings to words and use language to express interior experiences and memories,’ which ‘helps them to communicate verbally with others, which builds relationships’ (Bottaro, 2018). It might be argued, on the other hand, that even if differences in emotional expressivity have traditionally existed between men and women, they have begun to erode more recently as notions of what constitutes acceptable masculinity have changed and as younger generations of men have grown up with different masculine gender norms, including greater encouragement to share their feelings (see Anderson, 2009). More men are now involved in the direct care of their children (Dermott, 2008), more fluid ideas of gender identity have come to the fore, and the image of the ideal man as ‘buttoned up’ and inexpressive has been largely replaced in popular culture by alternative images of men as caring, expressive individuals (Robb, 2020). Nevertheless, my own experience as a researcher is that the process of change is uneven and that there remain specific social expectations around ‘being a man,’ which continue to frame research with men, particularly on sensitive topics, in significant ways.

CASE STUDY: A FOCUS GROUP STUDY EXPLORING GENDER IDENTITIES WITH YOUNG MEN The first case study draws on research that was conducted in 2015–2017 as part of a UK-wide project exploring the ways in which social expectations surrounding masculinity influence young men’s mental health and wellbeing. This, in turn, was one strand in a three-country study in the United Kingdom, the United States, and Mexico, led by the gender equality agency Promundo (now Equimundo) (Heilman, Barker, & Harrison, 2017). The UK study

Researching sensitive issues with men: some reflections  449 involved a number of focus group discussions with young men from diverse social backgrounds and ethnic groups, but mostly from socially disadvantaged communities, in a range of locations in London and the north of England. The discussions covered issues of gender roles, identities, and aspirations, as well as gender equality and intimate relationships. One of the persistent findings from research with young men is that many still find sharing their feelings problematic and that this difficulty is, in part, the result of persistent expectations about how ‘real’ men should behave, especially in the presence of other men (Robb & Ruxton, 2017). The stereotype of the inexpressive young male certainly found some support in our study. When discussing emotional problems, some participants in this study said that they would find specifically ‘masculine’ ways of dealing with them rather than sharing their feelings with others or seeking professional help. As one participant said: ‘Men, we just deal with it differently … we’ve got other channels of expressing our feelings.’ Some suggested that if they were experiencing problems, they would simply ‘bottle it up and get on with it.’ One member of a group of young men in their teens said: ‘We can get a laugh out of serious things if it comes to it. Always turn it into a bit of a joke.’ Humour was just one of the ways in which this reluctance to talk openly about emotional issues showed itself. Other strategies included giving brief or superficial responses to our questions or simply avoiding the question and moving on to other issues. This was certainly the case in our attempts in this study to raise the issue of sexuality and particularly same-sex relationships. However, perhaps the most significant strategies for not engaging with sensitive, emotional issues in evidence in our studies involved avoidance or diversion of these issues, strategies which can be seen as confirming what was said earlier about the defended nature of masculine identities. Anderson (2005) suggests that defensive masculinity is particularly evident in contexts where masculine identity is threatened, including what are perceived to be ‘feminised terrains.’ It can be argued that a focus group on sensitive issues such as gender identity and intimate relationships would certainly be perceived by some young men as a ‘feminised’ setting. This masculine defensiveness can have an impact on the research process in a number of ways. In a focus group with Black and ethnic minority young men in South London, one participant deflected a discussion of his own feelings about relationships by directing blame towards young women. It was clear that he had been through some painful experiences in his intimate relationships, but all of his emotional energy was directed outwards, towards women and girls: The government gives all the benefits to the female, all the parental responsibilities to the female. Like at the end of the day, yeah, I’ve seen it happen so many times, it’s becoming annoying. If I see another single mum walking down the street, yeah, I’m going to explode in my mind ... It’s gone from men being sexist to men having all the power to now really and truly women have got all the power.

Other defensive strategies included attempts to deny that a problem existed or, when discussing a painful issue, deflecting attention from the personal to the societal level. In the same group discussion in South London, this dynamic was evident in the vehement refusal by some participants to concede that men might experience real problems with depression, with the implication that to admit to this would be ‘weak’ and unmanly: P1: If anyone who says they have depression, for me, I think there’s weakness in them. P2: Exactly.

450  Handbook of sensitive research in the social sciences Interviewer: You think it’s weakness? P1: Yeah, yeah it’s weak, it’s an excuse.

The focus group study thus offered vivid examples of some of the challenges that can arise in researching sensitive topics with men, especially with young men. First, it became clear that, despite the changes that have taken place in gender roles and attitudes, many young men still find it difficult to share their experiences and feelings around sensitive issues, such as gender identity, in a public or semi-public setting. It would appear that some men perceive questions about these topics as a challenge to their masculine identity, this defensiveness manifesting itself in a variety of different ways, ranging from humour used to undermine the seriousness of the discussion, through silence, to anger and denial. These challenges can be especially acute in the context of a focus group discussion. Individual interviews may be more productive in tackling such issues, particularly with young men. Frosh and colleagues (2002), in their pioneering study of young masculinities, found that while the boys they interviewed were reluctant to talk openly about personal issues in group settings, they were much more ready to do so in one-to-one encounters. Thus, one might conclude that young men’s lack of confidence in sharing feelings in the research encounter is partly contextual and dependent on the researchers creating an environment in which there is less pressure to ‘perform’ masculinity in front of peers. In fact, a combination of focus group discussions, in which researchers introduce the sensitive topic and gain the confidence of participants, followed by in-depth individual interviews, may be a more productive approach. This was certainly the case in a successful recent study with unmarried young fathers in rural Zambia, which deployed both group and individual discussions to engage participants in talking openly about issues that were especially sensitive in that cultural context (Mvula, 2023). At the same time, it should be remembered that masculine identities are diverse and, at least in part, socially constructed, so the identities of young men will be shaped by varying social expectations around gender. Particular issues will be more or less ‘sensitive’ for different groups of young men, depending to some extent on their background and experience. Even within our focus group study, we found different levels of willingness to engage with the topics under discussion, depending to some extent on the age, social class, education level, ethnicity, and geographical location of the participants, as well as between different members of the same group. Since masculine identities are plural and diverse, it would be a mistake to assume that all men, even all men from a similar location or background, will respond similarly to being asked about the same sensitive topics. Reflecting as researchers on some of the challenges that we experienced in relation to this study, we concluded that, if undertaking similar research in the future, we would ideally spend more time with participants before embarking on focus group discussions. As it was, a combination of time and resource pressures, together with the limitations put on the process by local gatekeepers, meant that in practice, we only had about an hour with each group, which was probably insufficient time to build relationships of trust leading to open communication about issues relating (in this case) to gender identities and relationships. Participants’ questions and comments at the end of the discussions highlighted some serious misconceptions about our roles and identities as researchers, which more time spent with the group before the sessions might have gone some way to clarifying.

Researching sensitive issues with men: some reflections  451

CASE STUDY: AN INTERVIEW STUDY WITH BEREAVED FATHERS During 2021–2022, I worked with two colleagues on a small-scale study in which we interviewed men who had experienced the death of a child in the perinatal period and who had then joined football teams set up by and for bereaved fathers (Jones et al., 2025). The study set out to explore the extent to which involvement in the teams had helped fathers who had experienced perinatal loss and to assess what could be learned from their experiences about ways of improving support to bereaved men. Eleven men from locations across the UK were interviewed for the study, with all interviews taking place online via Microsoft Teams. The interviews were conducted by individual members of the research team, two of whom were female and one (me) male. Bereavement is undoubtedly a sensitive topic, and it could be argued that the experience of losing a child is a particularly sensitive and difficult subject to broach in everyday conversation, let alone an in-depth interview for an academic research study. In addition, it might be argued that there are additional sensitivities in play when discussing experiences of bereavement and grief with men. In contemporary Western cultures, men’s experience of bereavement continues to be framed by socially constructed ideas surrounding masculinity, which dictate that men should be stoic following a loss, with grief manifesting in either anger or silence. Men who do not grieve in accepted ‘masculine’ ways can feel judged, alienated, or disenfranchised. Men also tend to have fewer informal support networks than women, while formal bereavement support, in its focus on talking therapies and support groups, often fails to engage men or meet their needs. In addition, gendered social expectations may hinder men from expressing their feelings openly and from seeking help (Jones et al., 2019; Robb, 2025). However, contrary to the expectations created by these factors, our experience as researchers was that the men who volunteered for our study were, for the most part, both willing and able to discuss their experiences of bereavement and their needs for support. In many ways, the openness of these men to our questions contrasted with the defensiveness and reluctance encountered by many of the participants in the focus group study discussed above. In reflecting on why this should have been the case, a number of key reasons suggest themselves, which may have relevance for considering researching sensitive topics with men more generally. First, for all of the participants in the study, this was not their first opportunity to talk about their experience of bereavement. Their membership in football teams for bereaved fathers meant that they had all engaged, to some extent, in forums where they had been able to share their feelings with and receive informal support from other men with similar experiences. One explanation for men’s supposed reluctance or inability to talk openly about sensitive topics in research settings may be the lack of opportunities in contemporary Western culture for men to do so, although there is some evidence that this is changing. Therefore, a partial explanation for men’s apparent emotional inexpressiveness may simply be that there are fewer acceptable social opportunities for them to openly discuss their emotional lives compared to those available to women. For participants in our study, the experience of discussing their feelings about bereavement with fellow members of football teams, whether in informal chats on the touchline, at social events or in dedicated ‘WhatsApp’ groups, meant that the ice had already been broken, which in turn meant that they came to the study with a repertoire of ways of responding to questions about their experiences. Second, the experience of this research study highlights the importance of building relationships of trust with men to encourage them to take part in research on potentially sensitive

452  Handbook of sensitive research in the social sciences topics. Their previous involvement in the football teams had created strong bonds of trust between the men in our study, facilitating their willingness to share their experiences of bereavement. It was important that we, as researchers, built on these relationships and, in turn, developed trusting relationships of our own with potential participants. It helped that our study was viewed by the men as an extension of their involvement in the teams. It was also important that the interviews themselves were of sufficient length and sufficiently open-ended to allow time to create an atmosphere of mutual trust and respect between interviewer and interviewee. Arguably, another key reason why men were motivated to take part in our study and why they tended to be such engaged participants is that it provided an opportunity to validate their loss. One of the findings from our research was that fathers often felt their experience of bereavement and grief was unacknowledged by society, and they welcomed opportunities to have their experience affirmed. For men who had lost a child, the opportunity to memorialise their lost child and to affirm their own identities as fathers was extremely important. The interviews for our study provided an opportunity for this. This was particularly important, given the fact that there are fewer ‘safe’ contexts for men to talk openly about their feelings. This means that researchers need to be empathetic, affirming the validity of participants’ life experiences and emotions, though without losing their critical faculties. It also became clear that a number of the bereaved fathers were motivated to participate in our study, at least in part, by a desire to do something to help other men going through similar difficult experiences. They saw the study as a way of promoting the teams and encouraging other bereaved men to join. This reflected one of the key findings of the study, which was that men’s participation in the teams for bereaved fathers was frequently motivated by altruism. Some of those we interviewed had been responsible for setting up the teams themselves, while others had responded to their bereavement by taking part in fundraising events, such as marathons, to raise money for related charities. As one participant in our study said, ‘The biggest thing that’s helped me is knowing that it’s helped others,’ while another suggested that he ‘engrossed myself in fundraising and raising awareness’ as a way of keeping his child’s memory alive, thus linking an altruistic motive to a need to validate the fact of his loss. This echoes the experience of agencies working with men on mental health issues, that altruism can be a powerful motivation for men to participate in support services. In the words of Cally Hayes, from the men’s mental health charity Alright Mate, which uses an arts-based approach to engage men: Men wanted to do this, not necessarily to help themselves, but to help others. What was important was that they could produce something that was tangible and useful. The sharing of their stories and experience to co-create the installations and the books we’ve done was instead motivated by a sense of usefulness, purpose and a desire to support other people. (Hayes, cited in Robb, 2021)

Finally, the fact that the men interviewed for this study expressed a definite preference for support services based on activity, such as playing football, may also hold lessons for researching sensitive topics with men. The experience of agencies working with men on a range of issues relating to mental and emotional wellbeing is that conventional therapies remain less appealing to men than to women. The most recent figures suggest that only 36 per cent of referrals to National Health Service talk-based therapies in England are for men, a figure that is even lower for younger men (NHS, 2020). The football teams that were the focus of our research are just

Researching sensitive issues with men: some reflections  453 one example of a range of recent activity-based initiatives that have achieved a degree of success in involving men facing mental health and other difficult issues. Other examples include men’s walking and running clubs, and ‘men’s sheds,’ as well as the arts and theatre-based initiatives organised by groups such as Alright Mate, mentioned above. Peter Wright (2023), a researcher on male psychology, has argued that ‘men and boys may choose to regulate emotions not by verbalising them so much (women’s preferred method) but by taking intelligent action.’ The American writer Colin Campbell, whose two teenage children were killed when a drunk driver crashed into the family car, writes movingly about the difficulties many men face in talking openly about their feelings: ‘Many men … were raised with the idea that it is best not to talk about our feelings. It is seen as a weakness to share our pain’ (Campbell, 2023, pp.107–109). Reflecting on his own attempts to encourage other men to share their experiences of loss, Campbell concludes that ‘having a planned activity … seemed helpful.’ We weren’t meeting just to talk, we were meeting to take the dogs for a walk, or go to the batting cages, or to the shooting range, and so on. The talking happened in and around the activity. I had some good grief talks in diners and coffee shops, but some of my best talks with other men were either in the car or on hikes. I think it’s easier to open up when both of us are facing forward, rather than across from each other over a table. (Campbell, 2023, p.108)

Perhaps there are lessons in these initiatives for researching sensitive issues with men. Examples already exist of research studies that use a ‘go along’ methodology, which involves the researcher walking or travelling alongside a participant and asking questions along the way, or more radically, accompanying a participant in a more extended fashion as they go about their daily activities, with perhaps less emphasis on direct questioning (see Bartlett et al., 2023). It may be that such methods are particularly appropriate for research with men on sensitive topics.

A MAN RESEARCHING MEN A psychosocial perspective on the research process assumes that research data is produced dynamically in the interactions between the researcher and researched. To be sure, this is, in some ways, a socially constructed process in which the social identities of both the researcher and the participants, as well as the wider social context, will influence the data that is produced. However, a psychosocial perspective maintains that the research process is also influenced by unconscious and intersubjective factors. Hollway and Jefferson (2000, p.19) argue that a psychosocial approach construes ‘both the researcher and researched as anxious defended subjects, whose mental boundaries are porous where unconscious material is concerned.’ From a psychosocial perspective, the researcher is also a person with a constantly evolving identity, which includes their gender identity and their own unconscious motivations. There is substantial literature on the impact of researcher identity, including their gender or ethnic identity (for example, see Gough, 2003; Gunaratnam, 2003), but the emphasis is mainly on the impact of the researcher’s identity on participants. However, I suggest that the influence is two-way and that there is a need to encourage critical reflexivity on the part of researchers about how their own identities both shape and are shaped by the research encounter. This is particularly the case when the topic being researched is of a sensitive nature since it may generate sensitivities for researchers as well as for their participants.

454  Handbook of sensitive research in the social sciences Since gender identities are not simply inherent in the individual but continually produced in social interactions and relationships, it is important to take into account the impact of the researcher’s identity on the process. From a psychosocial perspective, the discussion of sensitive issues will inevitably have an impact on the researcher as well as those they are researching. In the case of a male researcher exploring sensitive issues with men, this means that the discussion of topics that are sensitive for men may also have an emotional impact on him (see also Chapters 1 & 3). In turn, this may have an impact on his behaviour as a researcher. At the same time, participants’ performance of masculinity in the research encounter will, to some extent, be in response to the researcher, and thus, the ways in which the participant perceives the researcher’s gender identity will have an impact on their own performance of masculinity. Elsewhere, I have argued that this is made up of a complex web of identifications and disidentifications (Robb, 2004a). These researcher-participant relationships inevitably have an unconscious component that evokes associations with previous relationships. For example, a younger man might possibly see in an older male researcher elements of his father or other authority figures in his life and frame his responses accordingly. There will then be identifications and disidentifications based on these positionings, and the ways in which these play out are not necessarily predictable or easy to disentangle (Robb, 2004a). There is a need for researchers to reflect critically on these processes and to enlist the support of others to enable them to do so. This can be done by including shared reflection on the research experience in meetings of the research team and being critically reflexive about the ways in which research data may have been shaped by these complex conscious and unconscious influences. As always, when researching sensitive issues, it is also advisable to incorporate an element of supervision into team processes.

CONCLUSION AND FUTURE DIRECTIONS This chapter has explored some of the complex issues that arise when researching sensitive issues with men, adopting a psychosocial approach to understanding masculine identities and the ways in which these come into play in the research encounter. The experience discussed in the first study suggests that, despite the changes that have taken place in gender roles and identities in recent years, there may be an unwillingness and inability among some men to discuss sensitive issues with researchers openly and that responses to questions about such issues may be defensive. However, the evidence of the second case study is that a number of factors may be helpful in facilitating open discussion of sensitive issues with men, including building relationships of trust; offering a range of opportunities for men to talk about issues; combining focus groups with individual interviews; using research methods that incorporate activity; and building on men’s need to validate experiences that may have been silenced or disenfranchised, as well as their altruistic desire to help others with similar needs and experiences. Future research with men on sensitive topics needs to be informed by an understanding of diverse and changing masculinities, as well as of the ways in which masculinities come into play in the research encounter. In addition to drawing on the kinds of methods and approaches discussed in this chapter, it is important that careful thought is given to the gender composition and dynamics of research teams and, where appropriate, to consider recruiting a mixedgender team so as to be able to compare and highlight any gendered differences both in the responses of participants and researchers’ interpretation of the data. Finally, it is important to

Researching sensitive issues with men: some reflections  455 build in time and opportunities for researchers to reflect critically, whether in peer support or supervision sessions, on the research encounter and the ways in which the gender identities of both researchers and researched may have influenced the research.

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31. The challenges of engaging in meaningful research on gender, domestic and sexual violence, and filicide Samantha Burton and Amie Simington

INTRODUCTION The definition of a sensitive topic can depend on the context of the social, cultural, and political movements when the research is undertaken (McCosker et al., 2001; see Chapter 1 in this volume). Research on topics within specific cultural or social contexts can be considered ‘sensitive’, such as gender, sexuality, or death, and can generate emotional responses that impact views, attitudes, and feelings as well as the emotional wellbeing of the researcher (Mallon & Elliott, 2021; McCosker et al., 2001; Pinto et al., 2022). For example, the current political environment surrounding the #MeToo movement and violence against women fuels anger and fears about the safety of women (Topping, 2021). Crime statistics highlight that a large majority of sexual and domestic violence involves male perpetrators and female victims (Australian Institute of Health and Welfare [AIHW], 2024), and there is a persistent framing of men as violent, aggressive, and toxic as an expected outcome of masculinity. In the current climate, male victims of female-perpetrated violence are often left reluctant to report (Taylor et al., 2022). The societal barrier to seeing men as victims is the pervasive belief that men are located within toxic masculinity discourse, as ‘real men’ are violent and, therefore, able to defend themselves from perpetrators (Waling, 2019; also see Chapter 30). Furthermore, the idea that females are passive has constrained men’s claims of victimisation. As such, men who are victims of domestic or sexual violence can be ignored, or their experiences trivialised. For instance, Terry Crews opened up about sexual assault by a former Hollywood talent scout in light of the #MeToo movement. Crews was not only mocked because he was seen to be too strong to be assaulted (based on how he looked), but the claim was deemed not only ridiculous but impossible (Tapia, 2019). Essentially, this suggested that his physical appearance, coupled with his biological male gender, meant he could not experience these things as he was not passive, weak, or vulnerable. Myths about men as victims of sexual or domestic violence can silence male victims and, in turn, have societal ramifications for men, such as a lack of specific domestic violence services for men. Men tend only to be seen as dominant, aggressive, and invulnerable. In the previous example, since Crews fitted that image, he or men in similar situations could not share the experience of #MeToo. In the same vein, female perpetrators of violence have been broadly constructed within the self-defence narrative as a way of protecting oneself or a child (Taylor et al., 2022). Filicide is the broad term used to refer to acts of child homicide by a parent or step-parent (Brown et al., 2020). Media reports of filicide have a large hand in underplaying the complexity of the offences and perpetuating cultural stereotypes of gendered roles. The framing 457

458  Handbook of sensitive research in the social sciences of individuals within the news media can be powerful as it relies on simplified, culturally informed narratives that can maintain or shape community expectations and legal responses (Eisenwort, 2021; Naylor, 2001). Mothers who perpetrate filicide are often framed by news media as suffering from a mental illness, a lack of social support, or drug and alcohol addiction (Krischer et al., 2007). They may also be categorised as lacking in what are argued to be cardinal traits of womanhood and, therefore, are essentially deviant and flawed as women for not fulfilling their motherhood role (Berrington & Honkatukia, 2002; McCluskey, 2022). Stereotypical notions of caring, nurturing, and passiveness can drive this view. The portrayal of women as perpetrators may challenge societal expectations of caregiving and maternal roles, as these narratives also reflect broader societal attitudes around gender (Webster et al., 2018). The violation of societal norms and expectations in cases of maternal filicide is reflected upon by LaChance Adams (2014, p.13) as a violation of ‘one of those rare, mutual assumptions shared by scientists and poets alike.’ Such was the case when Raina Thaiday took the lives of seven of her children and one niece in 2014. Despite her actions, Thaiday was framed in stereotypical notions of a nurturing mother who must have been insane to harm her children. The media reported her to be a loving mother who could not have understood her actions due to poor mental health, and she was eventually determined to be unfit for trial (Silva, 2017). On the other hand, when a father kills his children, the associated narrative very much aligns with expected masculine ideals, including aggression (Wiest & Duffy, 2012). While women are more likely to receive a community corrections order or mental disposition, men are more frequently sent to prison (Gelb, 2010). This suggests that a social script may still be used to either rationalise or instantly condemn the offenders for their actions. Unfortunately, this also reinforces a problematic narrative that men are inherently violent and women can only ever experience violence or must be insane to commit violent acts. These cases are located in the social ideal around gender expectations regarding behaviours that fit within gender roles. The media reflects and reinforces these roles using traditional ideals of masculinity (aggression, leadership, dominance) and femininity (passivity, compassion, submissiveness), underpinned by notions of what constitutes ‘good/bad women’ and ‘good/bad men’ (Wiest & Duffy, 2012). Gender often intersects with ideological values and beliefs, and therefore, seeing men as suffering, struggling, or as victims may be perceived as undermining these ideological positions. Likewise, the same ideological values stand true for women, as subsequent research has suggested that violence experienced by women at the hands of male perpetrators is not comparable to violence experienced by men at the hands of female perpetrators (Johnson, 2008; Taylor, 2022). Further, gender and cultural stereotypes position female offending as rare, and therefore, less attention is warranted (Murphy & Groves, 2024) and it is perhaps considered less newsworthy. According to gender theorists, gender is located as a ‘master status’ because gender defines what people are and what they do and holds significant relevance regarding cultural appropriateness in social situations (Eagly & Steffen, 1984; West & Zimmerman, 1987; Murphy & Groves, 2024). However, the perceived breaking of gender roles can provoke adverse reactions from society. There is a general societal belief that women are law-abiding and, therefore, not real criminals who can participate in violence maliciously. This feeds into the otherness of women as offenders and men as victims. Feminist voices have been particularly quiet in addressing these complex questions as this contradicts the narrative of female passivity and male dominance, which has been a popular narrative for decades (Abrams, 2016). However, the feminist ideals around justice and equality include holding individuals

Challenges of engaging in research on gender, domestic violence and filicide  459 responsible for their violent actions, regardless of gender; therefore, there needs to be a commitment from feminist literature acknowledging that women can commit acts of violence and can display both negative and positive behaviours as human traits, the same as men (Abrams, 2016). Acknowledging women’s acts of violence is uncomfortable but necessary in the movement to end gendered violence (Abrams, 2016; Jewkes, 2015). Attitudes towards gendered violence and inequality are among the factors that may contribute to sensitive research. Other societal factors, such as the media, divide and influence individuals’ opinions on sensitive matters. These societal issues are complex because they are challenging and antagonising. However, as social science researchers, we are encouraged to seek out knowledge gaps and produce reliable knowledge to add to bodies of research and grow information to better society collaboratively. It is difficult to undertake research that conflicts with previous societal ideas, principles, and beliefs. However, research that goes against predominant beliefs can identify blind spots, discover alternative solutions to complex problems, and uncover new perspectives (Gough, 2002). The goal of the research is ‘that of discerning and uncovering the actual facts of [people’s] lives and experience, facts that have been hidden, inaccessible, suppressed, distorted, misunderstood, ignored’ (Bergen, 1996, p.200, as cited in Liamputtong, 2019). We, the authors of this chapter, are gender researchers who go against the grain of dominant discourse. According to Powell (2007), we are looking for ways to expand, shift, and improve societal issues. In this chapter, we will discuss gender as a social category, the often opposing dichotomies, and the myths and stereotypes created around societal norms of masculinity and femininity. We will consider societal attitudes about acceptable and unacceptable targets of violence and the hierarchy that suggests who is afforded victim status. The ideal victim often revolves around notions of femininity. The media can mislead the public’s perception of violence through gender-biased narratives, such as those surrounding filicide, often weaponising mental health and women’s capacity to be perpetrators. The authors will reflect on their experiences of researching against dominant discourses when situating men as victims of violence and the backlash created. We will conclude with recommendations for future research, emphasising the crucial role it plays in challenging and changing these societal norms.

GENDER AS THE ONLY SOCIAL CATEGORY OF CONVENIENCE Gender as a social category creates discourses because there is evidence that gender discrimination, social equality, and equity are critical global issues (WHO, 2019). It is noteworthy that, historically, discussions around gender and violence have primarily centred on women’s experiences and perspectives. For instance, the language around the reported incidents of domestic violence can imply that men are responsible; for example, recent media reports of a domestic homicide stated, ‘Ms Perry is the 17th woman killed in Australia this year and the 4th to be slain this month’ (Lang & Schmidt, 2024, p.1). Although it was the victim’s daughter who was responsible for her death, this was not typically mentioned. Instead, the statement was very generalised as part of the more significant known issue of male-perpetrated domestic violence. It is easy for a reader to assume that a male committed this violence. In the realm of gender violence, the language used to assign blame in these instances not only reinforces bias but also maintains it. This is exemplified by the popularity surrounding the advocacy of men as perpetrators, which perpetuates harmful stereotypes and fails to address the root causes.

460  Handbook of sensitive research in the social sciences Gender is a social system in which Western culture defines culturally appropriate gender norms of masculinity and femininity based on the roles, behaviours, and responsibilities that society considers appropriate for women and men. West and Zimmerman (1987) and Butler (1999) suggest that gender is a performance of masculinity or femininity produced through social interactions. For instance, in Western society, there is a cultural rendering of what constitutes typical masculine behaviours, such as violence, aggression, and self-reliance. In contrast, feminine behaviours are defined as caring, passive, nurturing, and demonstrating humility (Butler, 1999; West & Zimmerman, 1987). It is important to note that more than two genders exist in society. This is not a new concept, with many Indigenous cultures globally having less rigidity in gender performance and expression, such as Two-Spirit Native American individuals who embody both feminine and masculine qualities or the Muxes in Mexico (Fewster, 2024; Natural History Museum, 2020). As such, this begs the question: where do those individuals sit within the gendered violence issue who may not identify with a singular gender (such as non-binary people) or have a gender identity that is not recognised in places around the world? They are, in effect, silenced, rendered invisible, and non-existent in the conversation on gender, despite gender being the only social category against which any social injustice issue is measured. Furthermore, gender identities are viewed and socially constructed (as informed by social construction theory that establishes meaning through social interactions) by societal norms (Andrews, 2012). Cultures create a sense of social status, identity, and belonging by constructing social categories into binaries (Blewett & Marcum, 2022). These social categories and bipolar conceptions create a dichotomy between masculinity and femininity, such as strong vs. weak or negative and positive characteristics (Bauman, 1991; Rohleder, 2014; Zevallos, 2011). This viewpoint that positions genders (men and women) in opposition to each other (violent/non-violent) speaks to the debunked biological positivist stance by Lombroso that predisposes men as inherently and solely violent and women as inherently and solely passive or weak (Fedorek, 2020). While positivism has been recognised as having some critical flaws, it does appear that selectively holding onto men as being inherently violent remains popular. This may also be highlighted in conversations about surviving violence in its various forms. The National Women’s Health Strategy [NWHS] (DoH, 2019) in Australia highlights women and children; however, when discussing issues of violence, they only refer to women and girls experiencing violence, often implied at the hands of men, while also disregarding young boys’ experiences of violence. At the same time, the National Men’s Health Strategy [NMHS] (DoH, 2019) does not speak to men or boys about being victims of violence at all. Therefore, no funding is given to the problem, which reinforces that men cannot be victims. Achieving gender equality becomes difficult when femininity and masculinity are perceived as directly opposing dichotomies. If, as a society, we create a competition where only those in the majority are afforded victimhood, then the minority group misses vital services. When endeavouring to accomplish gender equality in victim services, we need an ideology acknowledging that men and boys also face disadvantages. Men’s help-seeking continues to be hindered by vestigial attitudes that promote a systemic rejection of sexual violence victimsurvivors (Murphy & Groves, 2024). Great strides have been taken to shift away from outdated, flawed, and incorrect assumptions about biological positivism (Fedorek, 2020). Despite this, it appears that ingrained beliefs about men as violent and women as passive influence how conversations that speak to the contrary are not popular and are more likely to be rejected

Challenges of engaging in research on gender, domestic violence and filicide  461 or face significant criticism and pushback from conferences, journal articles, and even supervisory panels and ethics committees.

THE USE OF MYTHS AND RELIANCE ON STEREOTYPES Misrepresentations of men as perpetrators and women as victims can be associated with myths and stereotypes, such as the myth that men are always perpetrators and not victims or the myth that men are less affected by sexual or domestic violence. This reinforces the notion that violence experienced by men is less damaging and, therefore, less important. These myths and stereotypes persist even though there is clear and consistent evidence from research that men are at risk of victimisation, and the impact on men’s lives remains under-researched (see Murphy & Groves, 2024; Walker et al., 2020). Studies have shown that violence is perceived as less or more violent depending on gender. In general, people are less likely to accept the plausibility of violence committed against men and more likely to accept violence against women (Feather, 1996; Graso et al., 2023; Perles et al., 2021). Societal attitudes about unacceptable and acceptable targets of violence often shape attitudes toward violence. The social construction of gender stereotypes and stigmatisation become barriers to reporting victimisation for men due to fear of being dismissed, accused of being the perpetrator, or ridiculed for seeking help in sexual or domestic violence situations (Huntley et al., 2019). Infrequent reporting of male victimisation has led to rape myths flourishing and creating untruths that rape is less harmful to men (Walker et al., 2020). For example, in Victoria, Australia, a female teacher was taking a 16-year-old student out of his house at night for sex, but the judge found that the teacher’s actions were not predatory (Timms, 2024). However, this begs the question: if the genders were reversed, would the male teacher be considered not to be a predator? In short, we can comfortably say no; the male would have likely been jailed, or at the very least publicly labelled, and subjected to harsh scrutiny by the media and the community. Again, we see here a hierarchy that suggests one gender experiencing sexual or domestic violence is less important. Despite both genders experiencing sexual violence, only one is more likely to be afforded valid victim status while the other is downplayed and invalidated. The suggestion that a woman could overpower a man is viewed as unrealistic due to the assumption that men are inherently stronger than women. Therefore, men’s experiences can be ignored. However, abuse towards men can also take the form of manipulation, control, psychological and emotional abuse, as well as sexual abuse (Thomas & Kopel, 2023). The first woman in the UK to be convicted of coercive and controlling behaviour as well as grievous bodily harm was in 2019. The perpetrator isolated her victim from family and friends, scalded him with hot water, repeatedly hit him with hammers and hairbrushes, and stabbed him with a bread knife (Ritschel, 2019). However, traditional gender stereotypes can hinder social acknowledgement because violence against men by female perpetrators deviates from expected feminine behaviour. Relatedly, Murphy and Groves’ (2024) study found that early scholarship evidence suggests violence perpetrated by women against men is deemed less traumatic. There were more punitive attitudes towards male sex offenders than female sex offenders. There was a belief that male victims would derive more pleasure from female sexual assault, which views violence as a sexual fantasy or a wanted outcome, leading to the ‘Lucky Bloke’ perspective (Murphy & Groves, 2024, p.13). Barnett (2006, p.8) proposes that in such cases, ‘myth becomes a means to simplify complex information, reinforce cultural values

462  Handbook of sensitive research in the social sciences and norms, and offer explanations for events that seem baffling or troublesome. Stereotypes are deeply ingrained in society’s cultural and social structures, shaping attitudes, behaviours, and institutional systems. Although violence usually occurs within the context of men being violent towards women and children, studies reveal that there is a sizable number of females who perpetrate violence against men and children. There have been more than 200 studies confirming that women also commit acts of intimate partner violence, as summed up by Straus’s (2010) article ‘Thirty Years of Denying the Evidence on Gender Symmetry in Partner Violence.’ Men as victims are not viewed with compassion, and more often than not, when males do report being victims, they experience hostility, blame, and disbelief. These reactions also hold true even when they disclose their victimisation to friends and relatives (Pearson & Barker, 2018; Thomas & Kopel, 2023). Whilst there has been a great deal of necessary literature on examining women as victims, in contrast, what is known about men as victims is overshadowed by the knowledge of female victims (Pearson & Barker, 2018).

IDEAL VICTIMS—WHY MEN DO NOT FIT IN THE NARRATIVE Female-perpetrated sexual violence literature has significant gaps in the harm and impacts experienced by male victim-survivors (Murphy & Groves, 2024). In Australia, sexual violence is a significant issue with widespread under-reporting. Around 86 per cent of women and 14 per cent of men have been affected by sexual violence (Australian Bureau of Statistics [ABS], 2020). Underreported female-perpetrated sexual or domestic violence has allowed fables to flourish that men are not victims or that men experiencing DV are weak. On the other hand, only women can be perceived as legitimate victims. Controversially, Christie’s (1986) typology of the ideal victim identified that women are often seen as ideal and legitimate victims as they are placid and weak, a disadvantage due to the unavoidable circumstance of their own femininity that affords them more legitimate victim status (Islam, 2016). The ‘ideal victim’ is used to depict the classic victim as a young, innocent female out doing good deeds whom an unknown stranger attacks (Davies, 2017). While this is an outdated assumption, Christie (1986) identified that in terms of violence, men cannot be ideal victims. The ideal victim has become the benchmark for understanding legitimate and justifiable victim status. In the hierarchy of victimhood, women become the ones who occupy the top level of ‘true’ victimhood as they do not need to seek out sympathy or support (Cole, 2007). Rather, by virtue of their femininity, women are easily seen as legitimate victims, and sympathy or support is willingly given. In contrast to this characterisation of women as the archetypal victims, men are largely exempt from victim status and rendered invisible as victims (Davies, 2017). If women use violence against men, it is often said to be in self-defence (Carrington, 2013). Christie (1986) later contended that the typology of the ideal victim is propagated by the media and places more emphasis on newsworthy outcries versus stories that reflect a more inclusive and nuanced understanding of violence. In turn, this ensures that victims not deemed worthy of being ‘ideal’ are left at a crossroads.

Challenges of engaging in research on gender, domestic violence and filicide  463

VICTIMISATION AWARENESS, WHY SOCIETY REMAINS STEADFAST IN MAINTAINING EXCLUSION Social role theory explains that society holds expectations of behaviours and gender roles for men and women (Eagly et al., 2012). Individuals who transgress from the expected roles and obligations associated with masculinity and femininity conjure adverse reactions from society. For instance, in filicide cases, there is often an intertwining of the idea of a ‘good woman’ and the construct of a ‘good mother’ with the cultural ideas around femininity (Saavedra & Oliveira, 2016, p.345). Women who do not wish to have children or are violent towards their children are seen as violating the ‘good mother’ norm of instinctual nurturing and, therefore, thought to be abnormal or deviant (Shelton et al., 2010). Violent mothers especially challenge the societal idea of the good woman. The transgression of a violent woman from acceptable social norms and roles means that women who have committed violent acts are often categorised as deviant or mentally ill by the community, reinforcing the cultural ideal that women are natural-born nurturers (Wilcyzynski, 1997). Violent women and victimised women will typically receive extensive media coverage, which also aids in perpetuating the outdated cultural narratives already in place. Conversely, the media lacks representation of men as victims and perpetuates the idea that their victimisation is less significant than that of female victims. This hinders efforts in raising awareness of the victimisation of men and negatively shapes public responses and, therefore, societal support. Victimhood induced by sexual and domestic violence is one of criminology’s primary concerns and has been gaining academic momentum and widespread attention (Depraetere et al., 2018). However, the concept of victim identity is problematic because how victims are dealt with can be shaped by the assumptions that society makes about them, which can often be ill-founded. This is also true for offenders. As discussed above, this is primarily due to the socially constructed ideas around the ideal victim and, in connection with this, an ideal offender. Misleading representations of victims can keep the prevalence of sexual and domestic violence victimisation of men ambiguous without challenging the status quo. For instance, in Angelides’s (2010) study on female teachers’ sexual interactions with students, female offenders were depicted by their sexualised, attractive appearance, strengthening the ‘lucky bastard’ narrative. Females engaging in sexual interaction challenge gender stereotypes about perpetrators of sexual misconduct. Historically, female sex offenders have been reflected by traditional roles of being non-violent, fragile nurturers (Loxton & Groves, 2021). This leaves society rationalising that women are seldom considered capable of committing intentional harm. The blurring of lines speaks to misinformed understandings and leads to social discourse that questions female-perpetrated harm. However, male-perpetrated violence is not viewed in the same light, creating a more punitive attitude toward male offenders (Philippe, 2020). Social discourse has been presented similarly with female paedophiles (Zack et al., 2016). The New York Post reported in 2023 that six female teachers had been arrested over two days for sexual violations (Algar, 2023). Nevertheless, society is still steadfast in seeing males as the perpetrators, minimising the idea that male victimisation has a negative influence on not only physical health but also mental health that can lead to anxiety, fear, post-traumatic stress disorder, suicidal ideation, and social difficulties (Depraetere et al., 2018).

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THE ROLE OF THE MEDIA: THE GENDER BIAS NARRATIVE Public outrage and media attention in response to sexual or domestic violence or cases of filicide are widespread. The stereotype that suggests males are the perpetrators and females the victims may be strengthened due to media bias in reporting. Coverage of female perpetration is often treated as less severe than that of male perpetrators. Media attitudes and responses towards offenders and victims can influence society’s attitudes and responses towards offenders and victims (Houghton et al., 2023). The media often creates a dichotomy between masculinity and femininity through verbal and visual images that reinforce gender stereotypes. The Office of the High Commissioner for Human Rights [OHCHR] (n.d., p.1) defines a gender stereotype as ‘a generalised view or preconception about attributes or characteristics that are or ought to be possessed by women and men or the roles that are or should be performed by men and women.’ One of the primary tools media platforms use is to communicate dominant cultural values through stereotyping. As such, the media play a significant role in determining the cultural definitions of masculinity and femininity, promoting gender discourses (Ward & Grower, 2020)—for instance, the public perception of female teachers and male students. Media coverage often portrays the female teacher perpetrator as having a ‘love affair’ or ‘relationship’ rather than presenting narratives around sexual predators, as is usually the case for male teachers (Houghton et al., 2023). As such, stereotypes may offer flawed evaluations based on the oversimplified view of the group (Hentschel et al., 2019; Smithers, 2020). Gender stereotyping can cause an unequal relationship between men and women because these groups are defined against one another through the discursive process of stigmatising imagined or fundamental differences. Additionally, social media responses to female-perpetrated sexual violence can be susceptible to spreading misinformation. Notions of female innocence and looks are downplayed through reproduced gender characterisations, hindering social acknowledgement that reframes sexual violence against men. For instance, sexual advances by pretty women are constructed as socially desirable because men who receive attention from a pretty woman are considered ‘lucky blokes’ (Murphy & Groves, 2024). Deconstruction of female sex offenders as non-violent reflects social complacency toward female offenders and rejects male victimsurvivors (Loxton & Groves, 2021; Murphy & Groves, 2024). These narratives can discredit or even blame victims for the violence they have experienced and shape cultural attitudes toward men by downplaying the severity of the violent act. The language the media uses around men and masculinity reinforces the perception that all men are violent. This narrative can heighten people’s anxiety and fear around the perception of men, creating a process of dehumanisation and exclusion (Breines et al., 2008). These discourses divide society’s views of victims and perpetrators and, therefore, who should and should not be supported, hence creating a platform for sensitive research. For example, the media often uses masculinity to describe an assortment of men’s traits, such as mansplaining, mass shootings, murder, not looking after their health and wellbeing, abusive comments about women, and online trolling (Harrington, 2021; Salter, 2019; Whitehead & Groth, 2019). Mainstream media scripts often depict men as objectifying women, being sex-driven, and ranking sex over emotions, which affects how society views women and men. Further, the popular cultural portrayal of men shows men as incompetent, childish, lazy, and ignorant (Gulas et al., 2010).

Challenges of engaging in research on gender, domestic violence and filicide  465 Further, the media can misrepresent positive men’s behaviours. For instance, when Australian Ariarne Titmus won gold at the Olympics in Tokyo 2020, her coach, Dean Boxall, jumped for joy. The US media criticised Boxall for trying to centre attention on himself, being uncouth, and acting aggressively (McPhee, 2021). This redefined joyous celebration of his protégé’s win has now been identified as another toxic behaviour. When men are depicted within these narratives, the media fails to show men’s humanity; in essence, they become dehumanised. Equally, men are not written into narratives of being victims. Often, violence against men is considered laughable, and humour is often used to make light of men as victims. For instance, ‘Breaking up with your girlfriend by throwing her out the door of a moving car is not funny, but breaking up with your boyfriend in that manner is’ (Gulas et al., 2010, p.111), implying that the same violent act is not only acceptable but encouraged in one instance, and in the other, it is morally reprehensible. Commercials, television programmes, magazines, and advertisements can all portray violence as funny. This humorous portrayal can desensitise and normalise violence while at the same time creating public acceptance, especially if it is female-justified under the guise of female empowerment (Gulas et al., 2010; Hanson & Lysova, 2023; Kohlman, 2014). The media is skilled in weaponising and capitalising on societal fears surrounding violence. Furthermore, these fears are embedded in stereotypical gender roles and positioned within dominant cultural discourses. The media has become a tool for reporting violence within frameworks that can shape public opinion and influence the meanings of violence. Moreover, the media can potentially influence jurors, judicial officers, law enforcement, and others involved in the investigation and resolution of crime (Orthwein et al., 2010; Easteal et al., 2015; Hanson & Lysova, 2023). These disturbing stereotypes can result in differing treatment of female and male perpetrators in the courtroom, as male offenders are convicted with longer sentences and more often than their female equivalents (Weinsheimer et al., 2017). The reliance of news media on dominant criminal discourses is also frequently seen in the reporting of filicide cases. Filicide is the killing of a biological child, and Brown et al. (2020) found that in Australia, mothers were more often responsible for child homicide than fathers. The media typically portrays the circumstances and motivations through a social/cultural lens that encapsulates gendered narratives, such as the societal pressure around motherhood and the delineations of mental health. For instance, a Melbourne mother ‘who killed her three children before taking her own life’ was just was not her usual nurturing self in recent months (Chapman, 2021). The report went on to say that the mother was suffering from mental anguish and struggling with life pressure, particularly during COVID-19 lockdowns. In contrast, a Brisbane woman and her three children were killed by her estranged husband in a ‘horror act of domestic violence’ (Wuth, 2021). The perpetrator is reported as manipulative and having used a combination of guilt, shame, and threats, as well as strongly expressing anger to influence his partner’s choices. There is no consideration or mention of potential stressors that could have influenced the offender’s actions. The laden rhetoric from the media infuses the male subjects with negative meaning because masculinity and femininity are distinguished as binary opposites when it comes to violence.

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AUSTRALIA’S UNEASY RELATIONSHIP WITH THE REALITY OF FILICIDE: THE CASE FOR MOTHERS AND THEIR INNOCENCE According to the Australian Institute of Criminology’s [AIC] (2019) latest data, biological mothers killed 133 children compared to 82 killed by biological fathers. A mother murdering her child shatters societal expectations and norms. As such, media portrayals typically invoke ‘a manifestation of illness or a manifestation of evil’ (Meyer et al., 2001, p.17). As a news story, the ‘bad mother’ is disproportionately popular and consistent with a sensationalisation of violent women (Eisenwort et al., 2021; Goc, 2009). As discussed above, mothers are often represented as having mental health issues. This is particularly true for mothers who are still seen to adhere in some way to culturally acceptable feminine ideals. Saavedra and Oliveria (2016) conducted a thematic analysis of online articles and comments published by a Portuguese newspaper between 2003 and 2013 and described the ‘fragile’ and ‘perverse’ mother. The fragile mother was framed as struggling with societal conditions, mental illness, being a single mother, and/or being very young. This afforded them sympathy in the eyes of the community, and their actions were rationalised by way of recognising their apparent desperation. A perverse mother, however, did not adhere to notions of traditional femininity due to having been known to be violent, having murdered their children in horrid conditions, or having inappropriate sexual behaviours. These mothers were often criticised and garnered significantly less sympathy. Further, a study of media framing of filicidal mothers in Israel found that often, the media would interpret an offender’s behaviour or facial expressions to be sadness or remorse, an expected and acceptable outcome of a mother having harmed her offspring, which was typically sensationalised and used to soften the violent act committed (Cavaglion, 2008). Unlike cases of maternal filicide, there is a disconnection between man and father in cases of paternal filicide that changes the perception significantly. Paternal filicide is frequently framed as an expectedly aggressive response to a female partner’s inappropriate behaviour or failure to conform to domestic norms (Berrington & Honkatukia, 2002; McCluskey, 2019; Nikunen, 2006). One of the few studies in Australia to report on mental illness in the framing of paternal filicide cases was conducted by Little (2015). This study found that mental health was used to emphasise the lack of rational thinking on the part of male offenders. Unlike maternal cases, the lack of rationality highlighted in mental health framing for male offenders is typically not viewed sympathetically but rather as men losing control in angry, violent outbursts. Furthermore, women are portrayed as being less violent when they commit acts of filicide because they are more likely to suffocate or drown children, whereas men are more likely to strike or stab (Eriksson et al., 2016). Yet, the outcome, despite being the same, creates a dichotomy that rationalises one due to the perception that the death was less violent. For mothers who are responsible for filicide against younger children, motives have included having no graspable motive for their actions (acute psychosis), believing that a child’s death is in their best interest (altruism), and death from neglect, abuse, or fatal maltreatment (Resnick, 1969; Liem & Koenraadt, 2008). Research to date has suggested that many women who commit acts of filicide are reported to have either a psychotic disorder or depressive mental health issues (Palermo, 2002; Krischer et al., 2007; Léveillée et al., 2007). However, much of the coverage both downplays and simplifies the complexities of these offences (Wilczynski, 1991). Cultural stereotypes and prevailing myths are relied upon by journalists to make it easier for audiences to understand, reinforcing cultural narratives rather than centring on the true-life

Challenges of engaging in research on gender, domestic violence and filicide  467 record of events (Berrington & Honkatukia, 2002; Eisenwort, 2021). This can also be seen in reports of female sex offenders, which also conjure conflicting reality to the traditional depictions of sexual violence, denying the female capacity to inflict trauma or harm on men (Loxton & Groves, 2021). However, the ‘atta boy’ attitude that rationalises and celebrates male sexual abuse is not seen in cases of male-perpetrated sexual assault. Conversely, a comment suggesting that a woman was ‘asking for it’ based on her attire often implies sexism, victim-blaming, and the objectification of women as sexual objects, which typically leads to public outcry and scrutiny (Kellie et al., 2019). The contradictions are unsurprising as they continue to buy into narratives to chastise and demonise one group while telling the other how lucky they are for getting some ‘action.’ Nevertheless, public opinion creates a climate where women are seen as poorly supported and struggling with mental health, while men are labelled as irrational or monsters, even when both are experiencing adversity due to mental illness. The media is influential and, therefore, often aids policymakers in determining which issues belong on the political agenda. Additionally, the media plays a role in deciding who is responsible for the crime. For instance, whether society is to blame or an individual is to blame (Hanson & Lysova, 2023). The majority of the domestic or sexual violence stories portrayed by the media are about female victims. One of the premises the media uses is doubting the victim—this tactic is used to victim-blame in a large portion of sexual assault cases and is widely recognised as being used against female victims. But it is also used when it comes to men as victims of violence. Victim-blaming tactics used include the weakening of the male victim’s character and having sympathy toward the female perpetrator (Hanson & Lysova, 2023). For example, emasculating methods are used by describing male victims as poor financial providers, husbands, and fathers. On the other hand, the language used to describe the female perpetrator focuses on mental or emotional health or substance abuse, each one excusing the violence (Buiten, 2021).

WEAPONISING MENTAL HEALTH: A CASE OF TWO EXAMPLES IN AUSTRALIA When Raina Thaiday violently killed her seven children and one niece in Cairns in 2017, she was reported to have been ranting outside her house on the day while experiencing a schizophrenic breakdown (Silva, 2017). Thaiday was reportedly a loving mother, but she had reached a breaking point; her actions were related to a delusional belief that she was saving the children she killed from future suffering when the world ended (Silva, 2017). When Joel Cauchi killed six women in Bondi, he was also reported to have schizophrenia. However, he was reported to have targeted women in a senseless and violent mass murder, with police struggling to determine his motivation (Goldsworthy, 2024). Thaiday, despite having killed more victims and children, had her actions rationalised through a mental health lens, while on the other hand, Cauchi was given no rationalisation even with his mental health issues being recognised. Instead, it was framed as gendered violence of just another violent man killing women. Therefore, the positionality of gender as a lens to view issues of violence has different responses depending on the perpetrator. Men are seen as violent and aggressive, and women are seen as temporarily losing their minds. When Peter Harvey murdered his wife, children, and mother-in-law, he became the first person in Western Australia to be jailed for life. Justice

468  Handbook of sensitive research in the social sciences Hall said Harvey’s actions were ‘so far beyond the bounds of acceptable human conduct that they instil horror and revulsion into even the most hardened of people’ (Delaney, 2022, p.1). On the contrary, Akon Guode killed her three children by deliberately driving her car into a lake. Justice Lasry described the action as a tragedy, and Guode’s mental health at the time was impaired by depression (Delaney, 2022). Further, the media often minimises women’s capacity to cause harm because of the gendered social and cultural stereotypes that perceive women as harmless, or the idea that women’s violence is too rare to warrant further investigation. The societal competition between men and women born out of cultural narratives and misplaced gendered biases is not healthy. Violence is violence, and all perpetrators and victims should be acknowledged. The cultural desire to maintain double standards of steadfast ideals around masculinity and femininity has led to the victim-perpetrator dichotomy (Loxton & Groves, 2021). Increasing awareness of male victimisation is essential, as all victims deserve validation and protection. Male and female victims have a shared experience of victimhood. They both face stereotypes, stigmatisation, and fear of being believed when reporting crimes, which emphasises shared human experiences. By dismantling harmful stereotypes and promoting inclusive approaches, all those affected by violence can be supported without the sacrifice of one gender over another.

PUBLIC RIDICULE: GOING AGAINST THE GRAIN—AUTHORS’ REFLECTIONS In health and social sciences, qualitative research often covers sensitive issues, including sexual and domestic violence and the criminal justice system (Fenge et al., 2019). Research on sensitive topics can place researchers in ethical dilemmas and psychologically unsettling situations linked to ownership, voice, and power. For instance, at a recent conference, a student researcher was presenting their research on men’s behaviour programmes for perpetrators of domestic violence. The researcher remarked on men’s attitudes, pointing out that one of the participants dared to ask why there were no programmes for women perpetrators. Most of the audience laughed at such a ridiculous notion. Women do not need such programmes as they are the victims. However, those who were researching against the dominant discourse, suggesting that men are also victims, were left feeling judged and positioned to justify and validate their research. Arguably, researchers who go against dominant discourses can be led to believe their research is inappropriate or unprofessional. To this end, very little research has focused on the researcher’s vulnerability. Sensitivity is not just about the topic of research. ‘It is also about the emotional reaction evoked by the research’ (Mallon & Elliott, 2021, p.2). Researchers can experience anger, fear, hopelessness, and guilt. Often, these feelings are connected to the broader discourses in which the research takes place. Being a research student is a complicated journey with unpredictable events that can lead to emotional episodes (Polkinghorne et al., 2023). For example, researchers can feel fear when telling people about their research because of their reaction or professional image. Simpson and Wilson-Smith’s (2017) exploration into student research highlights the need for student researchers to have good-quality academic supervision, as they can experience insecurities about their preparedness to conduct sensitive research. This can also speak to the precarious nature of sensitive research, as there

Challenges of engaging in research on gender, domestic violence and filicide  469 is often a need for more support from other researchers and academics when trying to address the systems of oppression without reinforcing the same narrative. Ethics committees are concerned about the impact of research on participants because, when researching human participants, researchers must minimise harm and risk, respect human dignity, autonomy, and privacy, take precautions with vulnerable populations, and maximise the benefits of research fairly (Shamoo & Resnik, 2015). However, the emotional impact of research on both the participant and the researcher is equally essential (Brannan, 2014). Sensitive research has multiple layers and is affected by the research, the researcher’s peers, supervisors, and institutional environments. Research students often doubt their skills and abilities, which can be compounded by sensitive research topics, leading to negative consequences such as poor mental health (Polkinghorne et al., 2023). However, Mallon and Elliott (2021) highlight that current literature fails to fully acknowledge the role these aspects play in sensitive research for the researcher. In our own experiences, when speaking of men as victims, a lack of support for men, or reflecting on the contribution of societal norms to the mistreatment and misconceptions of offenders, it is often expected that we frame the presentations with a disclaimer that we are not detracting from women’s experiences or downplaying their more significant rates of victimisation. Often, this is done to gatekeep men as victims by positioning women as the majority of victims. Therefore, anything else detracts from the importance of only focusing on women. A recent report from the Centre for Social Justice (2022) identified that places such as the UK are lagging in terms of violence against men and boys. Notably, they identify a need to recognise and provide support for men and boys that is as constant and well-resourced as women and girls'. They acknowledge that despite efforts to be more egalitarian towards all victims of violence, discussions about men and boys as victims are met with firm resistance as there is a continual denial that anyone outside of biological women and girls can be victims of violence. Where the policy introduced speaks to how talking about men and boys as victims is a form of gender-based violence against women and girls because it takes attention away from the natural and worthy victims (The Centre for Social Justice, 2022). Other global organisations reinforce this gatekeeping behaviour, such as the United Nations’ global sustainable development goals focusing on girls’ and women’s gender inequality. According to the Global Health Nutrition Report (2020), 75 million girls are malnourished, and 117 million boys are malnourished. However, the SDG goals reinforce that girls are more important than boys. It should be reinforced that children, regardless of gender, are malnourished. The Australian government reiterates the same sentiment in the National Women’s Health Strategy by investing in women’s voices, advancing women’s economic empowerment, and ending violence against women and girls (Department of Health, 2019). Equally, the United Nations [UN] (2015) agrees that to achieve gender equality, there is a need to recognise and empower women and girls. For instance, in the UN sustainable development goals, goal five is dedicated to gender. It reads, ‘Achieve gender equality and empower our women and girls’ (Nuzzo, 2020, p.4). Arguably, society would be more equal if gender did not just represent women; violence knows no gender. By the same token, when researching filicide reforms so that there is equality in recognising men suffer from mental health issues as well, researchers walk a fine line because often, society feels that prioritising men means discrediting women. What is true in society is that there is less empathy for men who are granted leniency as perpetrators, even though they may be found to be equally mentally ill as their female counterparts (Friedman & Resnick, 2007).

470  Handbook of sensitive research in the social sciences However, it is not a competition, as violence is a major issue in Australian society. As social science researchers, it is not about denying victim status to women; it is about highlighting that men are also victims and also deserve victim status. It is the system in place that is being argued, not victimhood.

CONCLUSION AND FUTURE DIRECTIONS In the words of Erin Pizzey, ‘women and men are both capable of extraordinary cruelty … We must stop demonising men and start healing the rift that feminism has created between men and women. This insidious and manipulative philosophy that women are always victims and men oppressors can only continue this unspeakable cycle of violence. Moreover, it’s our children who will suffer’ (as cited in Zimmerman, 2018, p.2). Erin Pizzey was a women’s rights activist living in England in the 1970s. Pizzey started one of the first women’s shelters to protect women from violence at the hands of their significant others. Talking to the victims, Pizzey noticed a disturbing trend: many of the women discussing violence were committing acts of violence themselves. When Pizzey brought this to public attention to advocate for all victims of domestic violence, including men, she received death threats, slanderous comments and threats of being bombed by hardcore feminists (Pizzey, 2009). The dominant social view that men are perpetrators and not victims is still deeply embedded in society, yet the numerous studies that contradict this dichotomy have feminist movements and media outlets struggling to address women as perpetrators. However, even though empirical research has advanced what we know, the misconception about men as victims is also prevalent among counsellors and crisis workers, as well as law enforcement and medical trainees. One of the problems that contribute to the misconceptions about men as victims is that it has remained virtually invisible due to the lack of accurate information and attention given to male victims by theorists, media outlets, and researchers. Arguably, there is a limit to the social denial of women’s capacity to inflict sexual or domestic violence (Carrington, 2013). The same is true for the lack of recognition of a father’s mental health or struggles in cases of filicide, despite receiving significant recognition in maternal cases. Society has a way of refusing to see women as morally or individually blameworthy. Femicide literature significantly documents sympathetic language as a way of exonerating female perpetrators and, therefore, blaming the victim (Hanson & Lysova, 2023). Men’s gender norms inevitably harm men as victims because their perceived power in society contradicts any victimhood (Chaudhuri, 2012). Public discourse can attempt to reconcile female perpetrators by constructing women as victimised by society or having an unsound mind. Some feminist and patriarchal structures, therefore, tend to reinforce the victimisation of women by reinforcing the victim status within the context of diminishing responsibility, while simultaneously reinforcing the notion that men are too strong or too dominant to be allowed victim status. The media can act as an educational tool for violence and plays a role in how these social and political phenomena are perceived (Slakoff et al., 2020). While it is noted that these media representations often derive from hundreds of years of women’s oppression, cultural shifts and fostering respectful attitudes towards all victims is a way forward to an equal society. Acts of violence evoke social reactions of indignation and disbelief. These emotions can be amplified and reflected by the media. The media has a noteworthy impact on the public’s

Challenges of engaging in research on gender, domestic violence and filicide  471 perception of crime and can influence criminal justice outcomes—for instance, the ‘One Punch’ attack. One-punch attacks have been described as ‘king hits’ or ‘coward punches,’ causing death, permanent disability, or hospitalisation (Schreiber et al., 2016). Laws were enacted due to high-profile cases, public outcry, and the need to address the devastating consequences of one-punch attacks (Crupi, 2022). Whilst these laws are not explicitly gendertargeted, the statistical, social, and cultural context in which these laws operate can often result in the targeting of men and boys as both victims and perpetrators (Schumann et al., 2023). Little et al. (2017, p.7) argue that a trial by media is ‘… the dynamic, impact-driven, news media-led process by which individuals – who may or may not be publicly known – are tried and [metaphorically] sentenced in the court of public opinion.’ However, behind the headlines of violence and storytelling is the reality of the victims. The effects of violence on victims are devastating. Consequently, there is an underestimation from society of the harm done to men and children by female perpetrators. A combination of disbelief when men report sexual or domestic abuse or the lucky bloke narrative continues to invalidate men’s experiences. However, the negative attitude toward male victims and the sympathetic attitude toward female perpetrators driven by the media continue to play a role (Houghton et al., 2023). The general public seems to constitute a jury regarding violence, as public attitudes essentially inform and then drive policy and decision-making. Researching gender as a sensitive topic is complex and can be described as a negative discourse in the form of criticism, argumentativeness, and cynicism. This type of discourse can be harmful as it often focuses on adversarial outcomes rather than positive ones. As a consequence, researchers can face barriers that evoke emotional responses. When researching topics such as sexual and domestic violence, researchers can be confronted with scepticism and disbelief, which can stem from ingrained societal beliefs around men as perpetrators and women as victims. However, the backlash from researching against dominant discourses often emphasises what is wrong with the research rather than offering viable solutions. Furthermore, as a researcher undertaking important and valuable research on a sensitive topic, being belittled can erode confidence and create an environment for stress, anxiety, and burnout. However, it is critical to give a voice to those who are under-represented in research. Therefore, future research could look at the impacts on the researcher who is involved in sensitive research to ensure that the researcher’s wellbeing is supported. Tsirimokou et al.’s (2022) research found that traumatic material, such as violence, can be linked to decreased mental and physical wellbeing. Coupled with ridicule from other researchers, supervisors, and peers, it can erode a researcher’s professional self-image, as well as cause hopelessness, cynicism, and pessimism (Tsirimokou et al., 2022). Additionally, to truly advocate for all victims of violence, research needs to look at the shared experiences of violence as all genders suffer from fear, shame, trauma, and depression as a result of being victims. Looking through this lens can provide a platform to promote gender-inclusive approaches. Policies and laws need to protect all victims, ensuring equal access to services, counselling, shelters, and hotlines. In recognising commonalities, we can dismantle harmful stereotypes and foster a greater understanding of all victims.

472  Handbook of sensitive research in the social sciences

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476  Handbook of sensitive research in the social sciences Natural History Museum (2020). Beyond gender: Indigenous perspectives, Muxe. Nhm​ .org​ , 15 September, accessed 1 October 2024 at https://nhm​ .org​ /stories​ / beyond​ -gender​ -indigenous​ -perspectives​-muxe. Naylor, B. (2001). The “bad mother” in media and legal texts. Social Semiotics, 11(2), 155–176. https:// doi​.org​/10​.1080​/10350330120018292. Nikunen, M. (2006). Parenthood in murder‐suicide news. Idealized fathers and murderous mums. Journal of Scandinavian Studies in Criminology and Crime Prevention, 7(2), 164–184. https://doi​ .org​/10​.1080​/14043850601029430. Nuzzo, J. (2020, December 1). Bias against men’s issues within the United Nations and the World Health Organization: A content analysis. Psychreg Journal of Psychology. https://doi​.org​/10​.5281​/zenodo​ .4420901. Odunola, H., Olaseinde, O., & Olaseinde-Fayomi, B. (2020). A Textual Analysis of Audience Responses to Social Media Framing of Domestic Violence against Men. 5, 213–221, accessed 1 October 2024 at https://www​.researchgate​.net​/publication​/353295683​_ A​_Textual​_ Analysis​_of​_ Audience​ _Responses​_to​_ Social​_ Media​_ Framing​_of​_Domestic​_Violence​_against​_ Men. Orthwein, J., Packman, W., Jackson, R., & Bongar, B. (2010). Filicide: Gender bias in California defense attorneys’ perception of motive and defense strategies. Psychiatry, Psychology and Law, 17(4), 523– 537. https://doi​.org​/10​.1080​/13218710903566987. Palermo, G. B. (2002). Murderous parents. International Journal of Offender Therapy and Comparative Criminology, 46(2), 123–143. https://doi​.org​/10​.1177​/0306624X02462002. Parton, C. (2019). Attitudes towards violence against women and gender equality among people in NSW: Summary findings from the 2017 National Community Attitudes Survey (NCAS). ANROWS Insights, 9. Sydney: ANROWS, accessed 1 October 2024 at https://d2rn9gno7zhxqg​.cloudfront​.net​/ wp​-content​/uploads​/2019​/11​/25230500​/ NSW_​-2017NCAS​-ANROWS​_2019b​-WEB​.pdf. Pearson, J. & Barker, D. (2018). Male rape: what we know, don’t know and need to find out—a critical review. Crime Psychology Review, 4(1), 72–94. https://doi​.org​/10​.1080​/23744006​.2019​.1591757. Perles, F., Carbajo, J., Canto, J. M., & Vallejo, M. (2021). The role of gender in the perception of different forms of psychological violence in young couples. Sage Journal, 43(4). https://doi​.org​/10​ .1177​/0192513x21996390. Philippe, A. (2020). Gender disparities in sentencing. Economica, 87(348), 1037–1077. Pinto, A., Rodriguez, A., & Smith, J. (2022). Researching sensitive topics in healthcare. EvidenceBased Nursing, 25(2), 41–43. https://doi​.org​/10​.1136​/ebnurs​-2021​-103501. Pizzey, E. (2009). Why I loathe feminism... and believe it will ultimately destroy the family. Mail Online, 24 September, accessed 1 October 2024 at https://www​.dailymail​.co​.uk​/femail​/article​-1215464​/ Why​ -I​-loathe​-feminism--​-believe​-ultimately​-destroy​-family​.html. Polkinghorne, M., Taylor, J., Knight, F., & Stewart, N. (2023). Doctoral supervision: A best practice review. Encyclopedia, 3(1), 46–59. https://doi​.org​/10​.3390​/encyclopedia3010004. Powell, K. (2007). Going against the grain. PLoS Biology, 5(12), e338. https://doi​.org​/10​.1371​/journal​ .pbio​.0050338. Resnick, P. J. (1969). Child murder by parents: A psychiatric review of filicide. The American Journal of Psychiatry, 126(3), 325–334. https://doi​.org​/10​.1176​/ajp​.126​.3​.325. Richardson, Z. (2021). Gender stereotypes see female criminals fare better in court. centre for evidencebased public services, 17 November, accessed 1 October 2024 at https://ceps​.blogs​.bristol​.ac​.uk​/2021​ /11​/17​/gender​-stereotypes​-see​-female​-criminals​-fare​-better​-in​-court/. Ritschel, C. (2019). Man burnt and cut by ex-girlfriend in horrific domestic abuse case was “waiting to die”. The Independent, 21 February, accessed 1 October 2024 at https://www​.independent​.co​ .uk ​/news​/uk ​/ home​-news​/alex​-skeel​- domestic​-abuse​-girlfriend​-man​- documentary​-violence​-good​ -morning​-britain​-a8790671​.html. Rohleder, P. (2014). Othering. In: Teo, T. (eds), Encyclopedia of Critical Psychology. New York, NY: Springer. https://doi​.org​/10​.1007​/978​-1​- 4614​-5583​-7​_414. Saavedra, L. & de Oliveira, J. M. (2016). Transgressing motherhood: Media reports on infanticide. Deviant Behavior, 38(3), 345–355. https://doi​.org​/10​.1080​/01639625​.2016​.1197007. Salter, M. (2019). The problem with a fight against toxic masculinity. The Atlantic, accessed 1 October 2024 at https://www​.theatlantic​.com ​/ health ​/archive​/2019​/02​/toxic​-masculinity​-history​/583411/.

Challenges of engaging in research on gender, domestic violence and filicide  477 Schreiber, J., Williams, A., & Ranson, D. (2016). Kings to cowards: One-punch assaults. The Journal of Law, Medicine & Ethics, 44(2), 332–341. https://doi​.org​/10​.1177​/1073110516654126. Schumann, J. L., Sarkar, R., Grbic, M., Drummer, O. H., Gerostamoulos, D., Iles, L., & Bassed, R. (2023). Changing trends and characteristics of one punch deaths in Australia (2012–2018). Forensic Science International, 345, 111621. https://doi​.org​/10​.1016​/j​.forsciint​.2023​.111621. Shamoo, A. E. & Resnik, D. B. (2015). Responsible conduct of research (3rd ed.). Oxford: Oxford University Press. Shelton, J. L. E., Muirhead, Y., & Canning, K. E. (2010). Ambivalence toward mothers who kill: An examination of 45 U.S. cases of maternal neonaticide. Behavioral Sciences & the Law, 28(6), 812– 831. https://doi​.org​/10​.1002​/ bsl​.937. Silva, K. (2017). What drove a mother to kill eight kids? www​.abc​.net​.au, 3 May, accessed 1 October 2024 at https://www​.abc​.net​.au​/news​/2017​- 05​- 04​/cairns​-children​-killings​-what​-drove​-raina​-thaiday​ -slay​-8​-kids​/8492742. Simpson, K. L. & Wilson-Smith, K. (2017). Undergraduates’ experience of preparedness for engaging with sensitive research topics using qualitative research. Psychology Teaching Review, 23(1), 30–40, accessed 1 October 2024 at https://eric​.ed​.gov/​?id​=EJ1146411. Slakoff, D. C., Aujla, W., & PenzeyMoog, E. (2020). The role of service providers, technology, and mass media when home isn’t safe for intimate partner violence victims: Best practices and recommendations in the era of COVID-19 and beyond. Archives of Sexual Behaviour, 49(8), 2779–2788. https://doi​.org​ /10​.1007​/s10508​- 020​- 01820​-w. Smithers, R. (2020, December 15). Gender stereotyping is harming young people’s mental health, finds UK report. The Guardian. https://www​.theguardian​.com ​/society​/2020​/dec​/15​/gender​-stereotyping​-is​ -harming​-young​-peoples​-mental​-health​-finds​-uk​-report. Straus, M. A. (2010). Thirty years of denying the evidence on gender symmetry in partner violence: Implications for prevention and treatment. Partner Abuse, 1(3), 332–362. https://doi​.org​/10​.1891​/1946​ -6560​.1​.3​.332. Tapia, S. (2019). Celebrities mock Terry Crews sexual assault claims because he’s too strong to get assaulted, he shuts them down. Bored Panda, 28 January, accessed 1 October 2024 at https://www​ .boredpanda​.com ​/terry​-crews​-50 ​-cent​-sexual​-assault​-response/. Taylor, J. C., Bates, E. A., Colosi, A., & Creer, A. J. (2022). Barriers to men’s help seeking for intimate partner violence. Journal of Interpersonal Violence, 37(19–20), NP18417–NP18444. https://doi​.org​ /10​.1177​/08862605211035870. Timms, H. (2024). Victorian teacher sentenced for sexual relationship with student. NZ Herald, 29 May, accessed 1 October 2024 at https://www​.nzherald​.co​.nz​/world​/victorian​-high​-school​-teacher​ -sentenced​-for​-sexual​-relationship​-with​-student ​/AD6​U7Y7​A ZNF​A7K7​VYMN​YLVMNFA/. Thomas, J. C. & Kopel, J. (2023). Male victims of sexual assault: a review of the literature. Behavioral Sciences, 13(4), 304. https://doi​.org​/10​.3390​/ bs13040304. Topping, A. (2021). Endemic violence against women is causing a wave of anger. The Guardian, 11 March, accessed 1 October 2024 at https://www​.theguardian​.com​/world​/2021​/mar​/11​/endemic​ -violence​-against​-women​-is​-causing​-a​-wave​-of​-anger. Tsirimokou, A., Kloess, J. A., & Dhinse, S. K. (2022). Vicarious post-traumatic growth in professionals exposed to traumatogenic material: A systematic literature review. Trauma, Violence, & Abuse, 24(3), 1848–1866. https://doi​.org​/10​.1177​/15248380221082079. Waling, A. (2019). Problematising ‘toxic’ and ‘healthy’ masculinity for addressing gender inequalities. Australian Feminist Studies, 34(101), 362–375. https://doi​.org​/10​.1080​/08164649​.2019​.1679021. Walker, A., Lyall, K., Silva, D., Craigie, G., Mayshak, R., Costa, B., Hyder, S., & Bentley, A. (2020). Male victims of female-perpetrated intimate partner violence, help-seeking, and reporting behaviors: A qualitative study. Psychology of Men & Masculinities, 21(2), 213–223. https://doi​.org​/10​.1037​/ men0000222. Ward, L. M. & Grower, P. (2020). Media and the development of gender role stereotypes. Annual Review of Developmental Psychology, 2, 177–199. https://doi​.org​/10​.1146​/annurev​-devpsych​- 051120​ -010630. Webster, K., Diemer, K., Honey, N., Mannix, S., Mickle, J., Morgan, J., Parkes, A., Politoff, V., Powell, A., Stubbs, J., & Ward, A. (2018). Australians’ attitudes to violence against women and gender equality. Findings from the 2017 National Community Attitudes Towards Violence Against

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32. Reflections on researching interpersonal violence against older adults: obstacles and opportunities Hannah Bows

INTRODUCTION This chapter provides a reflective account of researching interpersonal violence and abuse (IPVA) against older adults. Whilst many of the challenges—and opportunities—that present themselves when doing research on IPVA are familiar to researchers regardless of the specific group or community their research focuses on (see Chapter 29 in this volume), there are particular considerations when researching violence against older adults. This chapter will focus on the conceptual tensions that surround the topic of violence in later life and the methodological hurdles to obtaining data on the experiences of older adults. It also considers some of the personal challenges and frustrations that I have encountered along the way, and how these have been navigated. The importance of working with stakeholders and practitioners is a central theme. The chapter concludes with some reflections on moving this field forward. A quick note on terminology. My research on IPVA among older adults has generally taken 60 as the starting point. There is considerable debate about how the terms ‘older’, ‘old’, ‘elderly’, and ‘senior’ should be used (Bows, 2019), which I grappled with when I first started researching violence and abuse of older people back in 2013. Despite the ubiquitous use of the terms older, elderly, and ‘elder abuse’, there is no shared agreement about the definitions of these terms. Across academic research, law, and policy, the terms older, elder and elderly are used variably to describe those aged 50 and over, 55 and over, 60 and over, and 65 and over. In Scotland, for example, the Scottish Public Health Network defines older people as those aged 65 and over, whereas Age Scotland offers their services to people aged 50 and over. A summary of the differences and debates around these terms is provided in my earlier work (Bows, 2019). Since writing my book, based on my doctoral research, these debates have continued, and there remains no consensus on how we should define older age. Indeed, there are good reasons for not having a consensus, at least globally, given the variations in life expectancy, retirement ages, and quality of life of people as they age across the world. My reasons for using 60 as a starting point are largely based on who has historically been excluded from our national victimisation survey in England and Wales. The Crime Survey for England and Wales (CSEW) has included a dedicated self-completion module on domestic violence, sexual violence and stalking since it was introduced in 2004. That module had an upper age cap of 59 until 2017 when it was increased to 74 and subsequently, in 2020, was removed altogether. This means that we have only just begun collecting data on victims over the age of 60, and it will be some time before we have built empirical insights from this work.

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IPVA AGAINST OLDER ADULTS: BACKGROUND Violence and abuse of older adults are often described as understudied, although research on the existence, risk factors, and professional responses dates back to the 1970s. However, it is true that feminists have not traditionally engaged with age in their analyses of violence and abuse or of inequality more generally. Instead, age has been largely left to gerontologists and those within health and social care disciplines to research and theorise. As de Beauvoir (1972) remarked, old age is viewed so negatively that its existence is denied, and older people are outcasts in their own societies. Little has changed since these observations were made by de Beauvoir, except that academics are (slowly) turning their attention to age and ageing in their assessments of violence and abuse.

CONCEPTUAL TENSIONS One of the biggest difficulties with researching violence against older adults is that the topic spans multiple disciplines with varying conceptualisations. Originally, the term ‘elder abuse’ was used to identify and label domestic violence experienced by older people in research emerging in the late 1980s (Mann et al., 2014; Bagshaw et al., 2009). Currently, the majority of work examining the abuse of older adults is located within the field of ‘elder abuse,’ although research from other fields, such as domestic violence, feminist studies, and criminology is also materialising. Similar to the terms old and elderly, there is no single agreed definition of elder abuse. The term ‘elder abuse’ is used to describe a range of abuses, contexts, and dynamics. The World Health Organisation (n.d.) defines ‘elder abuse’ as: an act of commission or of omission … either intentional or unintentional …. Of a physical, psychological, financial nature or other material maltreatment … that will certainly result in unnecessary suffering, injury or pain, the loss or violation of human rights, and decreased quality of life for the older person.

However, other definitions adopted by organisations and policies will often refer to a relationship or expectation of trust as a key element, and some definitions also include crimes by neighbours, friends, strangers, and acquaintances. The variety of definitions that exist has been argued to produce a ‘definitional chaos’ (Mysyuk, Westendorp, & Lindenberg, 2013, p.50) for researchers, practitioners, and policymakers. Generally, elder abuse definitions incorporate physical and non-physical abuse perpetrated by family members or those in relationships where there is an expectation of trust. Conceptually (and socially), abuse of older adults has been framed as qualitatively different from the abuse of younger people, leading to its positioning as ‘elder abuse.’ The term elder abuse was historically based on ageist views that positioned older people as similar to children who, therefore, needed protection from various types of abuse by others. Despite being strongly contested, the underlying assumptions have rarely been articulated or investigated (Killick et al., 2015, cited in Harbison et al., 2016, p.10). Harbison (2016) argues that there is no such thing as elder abuse. That does not mean that abuse of older adults does not exist, but rather that the construction of such under the umbrella

Reflections on researching interpersonal violence against older adults  481 of ‘elder abuse’ is based upon a ‘false premise of elder abuse and neglect’ (p. 5). Central to Harbison’s point is that the construction of the term as a single entity category masks the various actions and inactions that are diverse in origin, nature, and context and that the term has been constructed in the interests of professionals and governments. Crucially, older people’s voices and subjective experiences are absent from these developments and their needs and wishes are ‘subsumed under professional biomedical expertise’ (p. 6). Harbison (2016, p.162) goes on to argue that central to the field of elder abuse and neglect has been the idea that older people are inherently vulnerable, based largely on a biomedical model of ageing that sees it as a process of decline and decay. More generally, there have been growing concerns about how the term and concept of ‘elder abuse’ have expanded over the last 30 years, moving away from abuse by family and carers to, in some cases, including any and all crime, violence, or abuse in any context, defined as elder abuse simply based on the age of the victim. It has been argued that the continuous expansion of the concept has led to the term being used as a catch-all for all crimes against the elderly, ultimately undermining any potential value of the term (Anetzberger, 2012). Brandl and Raymond (2012) have argued that grouping the varying contexts and dynamics of abuse as a single collective issue is problematic, whilst Desmarais and Reeves (2007, p.381) suggest that this grouping together has led to an ‘overemphasis on types of abuse and perpetrators unique to elders,’ disregarding abuse occurring by partners. This is more troubling given the evidence which indicates that the majority of violence and abuse experienced by older people are perpetrated by partners or other family members (Bows et al., 2022). In most cases, this would come within definitions of domestic abuse and/or familial abuse more generally, raising the question of what value the term elder abuse actually provides. The term has been further criticised for distinguishing abuse experienced in younger life from that experienced after the age of 60. Holt and Shon (2018) have suggested that this distinction results in a ‘bracketing off’ of abuse of young and older adults, which inherently suggests these offences have unique characteristics that warrant an emphasis on age. However, this is not supported by the majority of research. Furthermore, the term has been argued to victim-blame—it positions the issue as one related to age (rather than gender, class, and/or other social demographics and identities) and, in doing so, may indirectly blame the victim for the abuse (Whittaker, 1995; Wolf, 2000). Several commentators have noted that the discourses around elder abuse, domestic violence and sexual violence have evolved separately and continue to be treated as distinct (McCreadie, 1996; Whittaker, 1995; Penhale, 2003), which has consequences and implications for survivors who may receive inconsistent responses from practitioners, particularly those working in health or the criminal justice system, and may be confused about whom to approach to make a disclosure or access support. In terms of practice, an ‘ideological gulf’ has been described between those working in domestic violence services and those in aged care (Scott et al., 2004, p.7). This creates a gap in knowledge and practice. For example, Harris (1996) points out that when violence against older people is viewed as elder abuse rather than domestic abuse, public services are largely health-based, and such interventions may prioritise prescribing antidepressants or sedatives, recommending couples or family counselling or providing help for the abuser (Brandl & Horan, 2002), which are the opposite responses to those identified as best practice with domestic or sexual violence victims. The varying definitions and conceptualisations of abuse of older adults create significant challenges when researching the topic. Three challenges I encountered were finding and

482  Handbook of sensitive research in the social sciences integrating existing literature, limited availability of national data challenges in recruiting victims and professionals, and navigating insider/outsider positionality in qualitative research with older victims. Finally, I briefly consider the emotional impacts of doing this kind of research.

FINDING AND INTEGRATING LITERATURE One of the difficulties created by the literature on the abuse of older adults spanning multiple disciplines, and using varying terminology and definitions is finding appropriate literature. Keywords such as ‘domestic abuse’ do not tend to reach the elder abuse literature or family violence literature. Meanwhile, most domestic abuse studies of older adults are actually restricted to just intimate partner violence. There are also specific bodies of research on sexual violence against older adults and homicide (including an emerging ‘eldercide’ literature). Understanding the existing empirical and theoretical evidence requires using a wide range of keywords and a lot of manual searches using references from existing literature. There are clear benefits to work being interdisciplinary, but most of the research on the abuse of older adults takes a specific disciplinary angle, which can make comparing research difficult. The varying definitions of abuse and criteria for ‘older’ used make big data comparisons difficult, and in a recent rapid review of the literature, we found it very difficult to extract data on victim and perpetrator demographics because of this (Bows et al., 2022). Additionally, qualitative research on elder abuse frequently includes abuse from carers or other non-familial perpetrators alongside data regarding abuse from intimates or family members, and this means building an understanding of victims' experiences of domestic abuse is difficult.

METHODOLOGICAL HURDLES I have encountered a number of methodological hurdles when researching different forms of violence and abuse against older adults. Two main challenges include the availability of national or ‘official’ sources of data on victimisation and recruiting victims and practitioners with experience in supporting older adults. Official Data In England and Wales, the main source of data on domestic abuse, sexual violence and stalking comes from the Crime Survey for England and Wales (CSEW). This annual survey is nationally representative, sampling around 35,000 households per year, and is designed to capture experiences of behaviours that do not require individuals to use the labels of abuse or violence. It is a self-completion survey and does not require any reports to have been made to official agencies. As such, it is seen as the most reliable source of data on prevalence, victim demographics, and risk factors. Other sources of data—such as police data or health data— only capture data on particular groups (those reporting to the police and/or engaging with particular services) and are less reliable in providing a national picture. One of the major limitations of the CSEW until recently was that the specific module on domestic violence, sexual violence and stalking did not sample adults aged 60 and over. Unlike

Reflections on researching interpersonal violence against older adults  483 the rest of the survey on general crime victimisation, which did include older adults, a decision was made by the Office for National Statistics (ONS), which has responsibility for the survey, that older adults would not be included. The reasons for this were set out in Walby and Allen’s 2004 evaluation of the British Crime Survey (the predecessor to the CSEW): Although the BCS includes respondents aged 16 and over, the questions on interpersonal violence were only asked of those aged between 16 and 59. This was for two main reasons. First, older people have greater difficulty with or resistance to using a computer in this way. Secondly, it was thought that issues of elder abuse (from family members other than intimates) might get confused with responses about violence from intimates and that these issues were more appropriately dealt with in a specialised survey. (Walby and Allen, 2004, p.118)

As I have outlined elsewhere (Bows, 2019), there are (at least) three problems with this justification. First, the suggestion that older people are a homogenous group that is unwilling or unable to use a computer is underpinned by discriminatory ageist assumptions and stereotypes. It was also unreflective of general technology access and use, as technology was still fairly new and rapidly developing at that point, and many people (of all ages) did not have consistent access in the way that they do now. The suggestion that people aged 60 and over are, in general, unable or unwilling to use technology (for the purposes of a survey) also makes the presumption that all of those under this age would be fully able and willing to do so, in a way that those aged over 60 are not. Yet, a few years later, the 2008/09 CSEW technical report described the results of a trial to extend the survey age range to 69. They reported that because a high proportion of respondents (around a quarter) requested help from the interviewer to fill in the self-completion section, the age range should not be extended (ONS, 2015). Yet, the report reveals this was not an uncommon issue, irrespective of age: around 16 per cent of people across all age groups required some assistance with the self-completion module, which was provided to them by interviewers, so it is unclear why this assistance could not be provided to older people to enable them to complete the survey. Second, the distinction between ‘intimate violence’ in the survey, which includes domestic violence and sexual violence, and ‘elder abuse’ was unnecessary. Irrespective of the differences in perspective on the concept of elder abuse, the term typically encapsulates the same types of violence, such as sexual abuse, rape, physical abuse, and mental abuse, which are contained in the definitions of rape and sexual assault under the Sexual Offences Act (2003) and the definition of domestic violence that was in place at the time. Therefore, distinguishing sexual violence experienced by older people purely on the basis of age was both unnecessary and ageist. It suggests a distinct type of violence is suffered by people because of, rather than in spite of, their age and carries assumptions and connotations of fragility, weakness, and victim blaming (Whittaker, 1995; Wolf, 2000). The third issue is the suggestion that a specific survey on ‘elder abuse’ would be better placed to collect data on domestic and sexual violence against older people. As I have argued (Bows, 2019, p.14): the CSEW already collects data on sexual and domestic violence and therefore suggesting a different type of survey would be better placed to collect data on the experiences of people over a certain age is discriminatory and further marginalises older victims of sexual and domestic violence by treating them as distinct and different to other people whose experiences are valued in the CSEW. It explicitly suggests that sexual violence against older people, particularly women, is not the same

484  Handbook of sensitive research in the social sciences as sexual violence against other (younger) women and again serves to re-categorise rape and sexual assault against older women as something to be treated by considering the age of the victim first.

Even if it was accepted that a separate survey on elder abuse was justified, such a survey was never conducted by the ONS. Instead, it has been left to academics to address the gap left by national data sources. Other sources of data suffer from methodological issues (for example, limited populations; combining abuse from intimates and non-intimates), which means that a picture of the scale of abuse of older adults is not possible by looking at, for example, police reports or health data. After lobbying from academics, charities, and campaign groups, the ONS announced in 2017 that the age cap would be lifted to 74 and from 2020, it was removed altogether. This means that data is now becoming available, although it will be some time before we have sufficient data to begin building an understanding of what violence and abuse of older adults looks like. Outside of England and Wales, other countries have included older adults in national victimisation surveys, so some data is available from these sources but is not always comparable. Many surveys include older adults—for example, the National Victimisation Survey (USA) includes respondents 16 and over, but data on victimisation, particularly domestic abuse, is not routinely analysed by age in the reports produced using the data. Other countries have similar limited data and/or limited reporting on abuse of older adults, meaning that, globally, we have a dearth of evidence on the prevalence, nature, and risk factors for abuse in later life. This makes research in this area all the more important but also difficult, as there is little baseline data, and it can be difficult to persuade funders, academics, or policymakers of the importance of research in this field in the absence of data showing it to be a significant problem. Absence of data has often been taken to mean absence of abuse of older adults. Recruiting Victims and Practitioners Several of my research projects have sought to gain insights from both victims and professionals to build an understanding of victim experiences, barriers to service engagement, appropriateness of services, and so on. Early on in my research, while planning my doctoral methodology, I realised that gaining this insight would be difficult, and this has remained the case to the present day. The lack of discourse around older adults as victims of abuse and/or the euphemising of the abuse of adults as ‘elder abuse’ means that both victims and professionals often do not ‘see’ abuse in this community. Studies have indicated that abuse of older adults can often be mistaken for accidental falls or bumps (Rosen et al., 2020), deaths of older adults are often automatically disregarded as suspicious, meaning post-mortems are not carried out, and victims may be so used to abuse due to longevity and/or generational norms that they do not recognise the behaviour as domestic or sexual abuse. Similarly, the small number of older people accessing specialist domestic or sexual violence services means that professional experience with this group is often limited, so insights from their perspectives are necessarily restricted. In all of the interviews I have conducted (more than 100) across multiple sectors (health, social care, age-related charities, criminal justice, specialist services, social work), no practitioner had supported or worked on more than ten cases involving an older adult and domestic abuse over the preceding few years.

Reflections on researching interpersonal violence against older adults  485 Contemporary methods of research recruitment can also pose difficulties with older people. Whilst increasing numbers of older people are online, they do not necessarily use social media or do not use it in the same way as younger people, so they may be less likely to see calls for research participants. They may also not think research on domestic abuse applies to them; as several participants have told me over the years, domestic abuse is a young person’s problem, not a term they would have used to describe or define their experience (Bows, 2019). Yet, research that includes victims is critical to building a full understanding of experiences and needs to inform policy and practice, so it is vital that older people are involved in research as much as possible. I have found that working with age-related charities, such as Age UK, provides opportunities to access large numbers of older adults in local communities, and these, alongside leaflets in places such as primary health centres, can help to access older people. In general, I have found that keeping recruitment broader than domestic abuse—for example, asking to interview older people about their experiences of relationships with partners or family members—has increased the number of older people willing to participate. Clearly, it is important that participants know in advance what the research is looking at, and information leaflets and consent forms have always made it clear that the research is particularly interested in relationships that have been difficult, challenging, or abusive. However, using language that is more familiar to older adults and less exclusive than labels such as domestic abuse has provided opportunities to gain insights from older people who would not have used these terms but who do describe behaviour that would meet the definitions of domestic abuse.

NAVIGATING THE INSIDER/OUTSIDER PARADIGM Reflexivity has gained a vital role in qualitative research and is ‘one of the fundamental concepts and practices that differentiate qualitative from quantitative research’ (Hsiung, 2008, p.211). Reflexivity in qualitative research is increasingly seen as a fundamental resource for understanding data (Elliott et al., 2012) and is one of the main themes in discussions of feminist research (Mauthner & Doucet, 2003). Reflexivity requires the investigator to pay close attention to not only what respondents have to say but also where, when, and under what circumstances they say it (see Chapter 1). Mauthner and Doucet (2003, p.418) note that, within discussions of reflexivity, ‘attention is often drawn to the importance of recognising the social location of the researcher as well as the ways in which our emotional responses to respondents can shape our interpretation of their accounts’. Whilst reflexivity is not exclusive to feminist researchers, it has been emphasised and brought to the fore in their writing (Sampson et al., 2008). Pillow (2003, p.178) points out that feminist theory and feminist researchers have ‘furthered discussions of reflexivity by situating reflexivity as primary to feminist research and methodology.’ In this section, I offer reflections on researching sexual violence against older women as a younger woman (an ‘outsider’) and the emotional impact of hearing the stories through qualitative interviews with older women survivors. Being an Outsider Researcher (and participant) positionality has been considered a central component of feminist research, particularly in relation to qualitative research (Ganga & Scott, 2006; Stanley

486  Handbook of sensitive research in the social sciences & Wise, 1983, 1990; Cook & Fonow, 1990; Reinharz & Davidman, 1992; Harding, 1992; Liamputtong, 2010, 2023). Consequently, qualitative researchers have engaged in extensive debates about the benefits and drawbacks of researchers being ‘insiders’ or ‘outsiders’ to the community they study (Kerstetter, 2012). Insiders are generally considered those who share a characteristic or experience with the subject of the research and, by extension, the participants. For example, a black female academic researching black women’s experiences of inequality may be considered an ‘insider’ in that she shares the same ethnicity with her participants and is likely to have experience (directly or otherwise) of inequality based on her ethnicity. Outsiders are generally considered those who have little in common with participants, either in terms of personal characteristics or experience. For example, a white female academic researching black women’s experiences of inequality. In reality, there is more nuance since most of us will be both insiders and outsiders to different degrees in any project (see Liamputtong, 2010, 2023). However, several benefits to being an ‘insider’ researcher have been identified, including the ability to engage research participants more easily and use their shared experiences to gather a richer set of data (Dwyer & Buckle, 2009). On the other hand, it has been suggested that they may find it difficult to separate their personal experiences from those of research participants (Kanuha, 2000) and face issues of confidentiality when interviewing members of their community about sensitive subjects (Serrant-Green, 2002). Conversely, outsider researchers are frequently valued for their objectivity and emotional distance from a situation but may find it difficult to gain access to research participants (Chawla-Duggan, 2007; Gasman & PaytonStewart, 2006). However, several researchers have reflected on their methodological choices and the impacts of being an ‘outsider’; that is, researching a group that they do not belong to because of age, class, gender, ethnicity, life experiences, or some other reason (Ganga & Scott, 2006; Liamputtong, 2010, 2023). Although I have always shared some commonalities with the older people I have interviewed (primarily sex and, in some cases, class), the main difference was age; the (predominantly) women I interviewed were at least 35 years older than me. Furthermore, I do not share their experiences of domestic abuse or sexual violence. I was, therefore, an ‘outsider.’ The issue of younger researchers interviewing older women has not been extensively considered in the existing literature. This is, in part, because research in the gerontology field has typically been conducted by older researchers. As Walker (2007, p.58) notes: traditionally, research with older people, especially from a feminist standpoint, has been undertaken by older people themselves who have reflected upon their own experiences in an attempt to move closer to their subject and develop close, personal relationships with their study cohort.

Stöckl et al. (2012, 2015) suggest that, due to their upbringing, exposure, and the shame and isolation associated with intimate partner violence, older women are less likely than young women to talk openly with outsiders about their intimate relationships and might find it harder to report violence to a researcher (Hagemann-White, 2001). I was, therefore, concerned prior to interviews about the impact my age might have on the process and whether the older women might be reluctant to share their experiences with a much younger researcher. Although my age was not disclosed at any point before or during interviews, I was aware throughout all my qualitative projects of the age differences between me and most of my participants. I understood that I was asking participants, who were of a similar age to my

Reflections on researching interpersonal violence against older adults  487 grandparents, to disclose personal details about sensitive and possibly traumatic experiences. However, despite some concerns that older people might feel uncomfortable sharing details of their experiences, particularly considering interviews with practitioners who have described the age of practitioners as a key issue for older survivors who found it difficult to engage with younger counsellors or support workers, I found all my participants very willing to speak to me. For example, in my doctoral research on sexual violence against older women, some of the participants spoke about their children being a similar age to me. They seemed to enjoy asking me questions about my life and comparing that to their own and their children’s. For example, one of the women noticed my engagement ring and was very keen to hear about my wedding plans and told me all about her own daughter’s recent wedding. In all my projects, I felt my age helped to build rapport and trust. As Wray and Bartholomew (2010) found in their research, the younger age of the two researchers did not increase their outsider status as expected. Unexpectedly, it meant that the participants described their experiences of past events in more detail because they assumed the researchers were too young to have first-hand experience of them. As such, the data that was generated was perhaps more in-depth than it would have been if the participants and researchers had been of a similar age. Although I cannot be sure that this was the case in my research, I did not feel my age acted as a barrier to interviewing older adults about their experiences. Emotional Impacts Undertaking sensitive research can have a range of emotional impacts on the wellbeing of the researcher (Campbell, 2002; Dickson-Swift et al., 2009; Ellsberg et al., 2001; also see Chapters 1 & 3). Listening to the stories of women who have experienced sexual violence can be upsetting and difficult for the researcher, described by Carroll (2013) as ‘emotional labour’. Although I have previous experience interviewing women about their experiences of domestic and sexual violence and hearing stories of high levels of physical violence and the impact and consequences of this on women, I did find one of the survivor interviews in my PhD (Bows, 2019) particularly difficult to listen to. One of the survivors I interviewed (Jennifer) had been raped by two men, and the rape involved significant physical violence, resulting in a multitude of physical and psychological injuries and harm. Hearing her story, which she shared in great detail, was very difficult, and I felt both shocked and upset at the details, particularly where the perpetrators had purposely inflicted pain on Jennifer as part of the rape. Hearing how this had impacted her and continued to affect her physical health was also upsetting. The fact that only one of the perpetrators was found guilty at trial was infuriating. Ellsberg et al. (2001) report that interviewers in their study found listening to women’s stories deeply distressing. I replayed the details Jennifer had shared with me over in my head continuously as I drove the two and-a half-hours home after our interview, and I have thought about them on many occasions since. Researching in the area of violence against women can sometimes reduce sensitivity to the stories of survivors, as they become almost normalised; however, hearing Jennifer’s experience was a shock to me and served as a stark reminder about the levels of violence women experience at the hands of men. It made me even more passionate and committed to research and activism in this area, particularly for older women, as their stories have, to date, not been included in the research. It reminded me why the research is so important and giving a voice to older women who have experienced domestic abuse and sexual violence is critical.

488  Handbook of sensitive research in the social sciences

CONCLUSION AND FUTURE DIRECTIONS This chapter has provided an overview of some of the challenges—but also opportunities—in researching violence and abuse of older people. Many of the challenges described in these pages continue: there continue to be conceptual tensions with how to define and approach abuse of older adults; robust data on prevalence and risk factors remain sparse; accessing and recruiting older participants is difficult—but over the last ten years, there have also been significant improvements. When I began researching in this field in 2012, few others were working in this space, particularly from a feminist perspective. That has changed in recent years, and there is a growing number of researchers conducting empirical and theoretical studies on violence and abuse against older adults. It is common to see at least one paper in this area at conferences, and policymakers and practitioners are also increasingly interested in this work. From a methods perspective, the growing conversation about domestic abuse in later life through dedicated campaigns, specialist projects, and general awareness has led to more older adults seeking support, which is improving practitioner understanding and knowledge. Similarly, it has been easier to find professionals and victims willing to take part in interviews in recent years. In terms of national data, we now have several years of data from the ONS on domestic abuse against adults aged 16–74, and within a few years, we will have data on all older adults, allowing for analysis of similarities and differences in abuse, victim characteristics, and risk factors. We have begun this analysis by obtaining and analysing data from the 2017–2020 CSEW sweeps and will be publishing our findings shortly (Bows et al., 2019). This means that for the first time, we now have data on domestic abuse against older people, which will inform our understanding of the phenomenon and guide research going forward. Older people’s subjective experiences and their ‘voices’ continue to be relatively absent in research. There can be additional difficulties in recruiting older people to take part in research, particularly on subjects that continue to be considered taboo or private and which many older people either do not want to discuss or, in some cases, do not recognise as being their experience. Methods to recruit participants that are increasingly relied on by academics, for example, using social media and other online platforms, may not have the same success with some communities of older people. There is also a larger proportion of older adults who reside outside of the community (for example, in care homes) and/or may not be able to give informed consent to take part in research, all of which create barriers to accessing and recruiting older people. Nevertheless, it is critical that efforts continue to involve older people in research, and using peer research and participatory projects, and perhaps nontraditional methods such as arts-based methods, may offer particular promise in broadening the reach of projects and increasing samples of older participants. Moreover, the use of peer researchers and/or participatory research designs may also help to address any broader challenges associated with being an ‘outsider.’ However, in my experience, this was less of a problem than I had imagined once I had actually recruited participants. I do wonder, however, if it may have contributed to the small samples I was able to recruit for my projects, an issue flagged by other researchers conducting work in this field.

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Reflections on researching interpersonal violence against older adults  489 Bows, H. (2019). Sexual violence against older people. Routledge. Bows, H., Penhale, B., Bromley, P., Pullerits, M., Quinn-Walker, N., & Sood, A. (2022). Perpetrators of domestic abuse against older adults: Characteristics, risk factors and professional responses. Durham: Durham University. Brandl B. & Horan D. (2002). Domestic violence in later life: an overview for health care providers. Women and Health, 35(2-3), 41–54. Brandl, B. & Raymond, J. (2012). Policy implications of recognizing that caregiver stress is not the primary cause of elder abuse. Generations, 36(3), 32–39. Campbell, R. (2002). Emotionally involved: The impact of researching rape. New York: Routledge. Carroll, K. (2013). Infertile? The emotional labour of sensitive and feminist research methodologies. Qualitative Research, 13(5), 546–561. Chawla‐Duggan, R. (2007). Breaking out, breaking through: accessing knowledge in a non‐western overseas educational setting—methodological issues for an outsider. Compare, 37(2), 185–200. Cook, J. A. & Fonow, M. M. (1990). Knowledge and women’s interests: Issues of epistemology and methodology in feminist social research. In J. McCarl Neilsen (ed.) Feminist research methods: Exemplary readings in the social sciences (pp.69–93). Boulder, Colorado: West View Press. de Beauvoir, S. (1972). Old age. Harper Collins. Desmarais, S. L. & Reeves, K. A. (2007). Gray, black, and blue: The state of research and intervention for intimate partner abuse among elders. Behavioral Science and the Law, 25(3), 377–391. Dickson-Swift, V., James, E. L., Kippen, S., & Liamputtong, P. (2007). Doing sensitive research: what challenges do qualitative researchers face? Qualitative Research, 7(3), 327–353. Dwyer, S. C. & Buckle, J. L. (2009). The space between: On being an insider-outsider in qualitative research. International Journal of Qualitative Methods, 8(1), 54–63. Ellsberg, M., Heise, L., Pena, R., Agurto, S., & Winkvist, A. (2001). Researching domestic violence against women: methodological and ethical considerations. Studies in Family Planning, 32(1), 1–16. Elliott, H., Ryan, J., & Hollway, W. (2012). Research encounters, reflexivity and supervision. International Journal of Social Research Methodology, 15(5), 433–444. Ganga, D. & Scott, S. (2006). Cultural “insiders” and the issue of positionality in qualitative migration research: Moving “across” and moving “along” researcher-participant divides. Forum Qualitative Sozialforschung/ Forum: Qualitative Social Research, 7(3). Gasman, M. & Payton‐Stewart, L. (2006). Twice removed: a White scholar studies the history of Black sororities and a Black scholar responds. International Journal of Research & Method in Education, 29(2), 129–149. Hagemann-White, C. (2001). European research on the prevalence of violence against women. Violence Against Women, 7(7), 732–759. Harbison, J. R. with Coughlan, S., Karabanow, J., VanderPlaat, M., Wildeman, S., & Wexler, E. (2016). Contesting elder abuse and neglect: Ageism, risk, and the rhetoric of rights in the mistreatment of older people. Vancouver: UBC Press. Harding, S. (1992). Rethinking standpoint epistemology: What is “strong objectivity?”. The Centennial Review, 36(3), 437–470. Harris, S. B. (1996). For better or for worse: Spouse abuse grown old. Journal of Elder Abuse and Neglect, 8(1), 1–33. Holt, A. & Shon, P. C. (2018). Exploring fatal and non-fatal violence against parents: Challenging the orthodoxy of abused adolescent perpetrators. International Journal of Offender Therapy and Comparative Criminology, 62(4), 915–934. Hsiung, P. C. (2008). Teaching reflexivity in qualitative interviewing. Teaching Sociology, 36(3), 211–226. Kanuha, V. K. (2000). “Being” native versus “going native”: Conducting social work research as an insider. Social Work, 45(5), 439–447. Kerstetter, K. (2012). Insider, outsider, or somewhere in-between: The impact of researchers’ identities on the community-based research process. Journal of Rural Social Sciences, 27(2), 99. Killick, C., Taylor, B. J., Begley, E., Anand, J. C., & O’Brien, M. (2015). Older people’s conceptualization of abuse: A systematic narrative review. Journal of Elder Abuse and Neglect, 27(2), 100-120. Liamputtong, P. (2010). Performing qualitative cross-cultural research. Cambridge: Cambridge University Press.

490  Handbook of sensitive research in the social sciences Liamputtong, P. (2023). Conducting cross-cultural research qualitatively in social science: Setting the scene. In P. Liamputtong (ed.), Handbook of qualitative cross-cultural research methods: A social science perspective (pp.1–24). Cheltenham, UK and Northampton, MA, USA: Edward Elgar. Mann, R., Horsley, P., Barrett, C., & Tinney, J. (2014). Norma’s Project: A research study into the sexual assault of older women in Australia. Australian Research Centre in Sex, Health and Society, La Trobe University. Mauthner, N. S. & Doucet, A. (2003). Reflexive accounts and accounts of reflexivity in qualitative data analysis. Sociology, 37(3), 413–431. McCreadie, C. (1996). Elder abuse: Update on research. Age Concern Institute of Gerontology; King’s College, London. Mysyuk, Y., Westendorp, R. G., & Lindenberg, J. (2013). Added value of elder abuse definitions: a review. Ageing Research Reviews, 12(1), 50–57. Office of National Statitics (2015). Population estimates for the UK, England and Wales, Scotland and Northern Ireland: mid2015. ONS: UK. Penhale, B. (2003). Older women, domestic violence, and elder abuse: A review of commonalities, differences, and shared approaches. Journal of Elder Abuse & Neglect, 15(3–4), 163–183. Pillow, W. (2003). Confession, catharsis, or cure? Rethinking the uses of reflexivity as methodological power in qualitative research. International Journal of Qualitative Studies in Education, 16(2), 175–196. Reinharz, S. & Davidman, L. (1992). Feminist methods in social research. Oxford: Oxford University Press. Rosen, T., LoFaso, V. M., Bloemen, E. M., Clark, S., McCarthy, T. J., Reisig, C., Gogia, K., Elman, A., Markarian, A., Flomenbaum, N. E., Sharma, R., & Lachs, M. S. (2020). Identifying injury patterns associated with physical elder abuse: analysis of legally adjudicated cases. Annals of emergency medicine, 76(3), 266–276. Sampson, H., Bloor, M., & Fincham, B. (2008). A price worth paying? Considering the cost of reflexive research methods and the influence of feminist ways of doing. Sociology, 42(5), 919–933. Scott, M., McKie, L., Morton, S., Seddon, E., & Wosoff, F. (2004). Older women and domestic violence in Scotland. Edinburgh: Health Scotland. Serrant-Green, L. (2002). Black on black: Methodological issues for black researchers working in minority ethnic communities. Nurse Researcher, 9(4), 30–44. Stanley, L. & Wise, S. (1983). Breaking out: Feminist consciousness and feminist research. London: Routledge. Stanley, L. & Wise, S. (1990). Method, methodology and epistemology in feminist research processes. In Liz Stanley (ed.), Feminist praxis (pp.20–60). London: Routledge. Stöckl, H., Watts, C., & Penhale, B. (2012). Intimate partner violence against older women in Germany: Prevalence and associated factors. Journal of Interpersonal Violence, 27(13), 2545–2564. Stöckl, H. & Penhale, B. (2015). Intimate partner violence and its association with physical and mental health symptoms among older women in Germany. Journal of Interpersonal Violence, 30(17), 3089–3111. Walby, S. & Allen, J. (2004). Domestic violence, sexual assault and stalking: Findings from the British Crime Survey. Home Office Research Study 276, London: Home Office Research, Development and Statistics Directorate. Walker, A. (2007). Why involve older people in research? Age and Ageing, 36(5), 481–483. Whittaker, T. (1995). Violence, gender and elder abuse: Towards a feminist analysis and practice. Journal of Gender Studies, 4(1), 35–45. Wolf, R. S. (2000). Studies belie caregiver stress as key to elder mistreatment. Aging Today, 19(6), 8−9. World Health Organisation (n.d). Definition of an older or elderly person, accessed 2 October 2024 at http://www​.who​.int​/ healthinfo​/survey​/ageingdefnolder​/en/. Wray, S. & Bartholomew, M. (2010). Some reflections on outsider and insider identities in ethnic and migrant qualitative research. Migration Letters, 7, 7–16.

33. Challenges for meaningful participation in prisoner or corrective services research Nicole Peel, Alex Workman, Samantha Burton and Arianne Reis

INTRODUCTION Prisons can be considered ideal for research because their conditions are relatively stable, the population is consistent, and there are fewer external factors affecting the prisoners’ lives compared to participants outside of prison. Additionally, conducting research in prisons is often more cost-effective (Annas, Glantz, & Katz, 1977). However, conducting research in a prison environment presents numerous challenges. This stability is partly a result of the evolution of prisons as a modern form of punishment, replacing earlier methods like public hangings. While prisons now serve as a tool for enforcing social conformity and state control, this very system also provides a controlled environment that is conducive to research, highlighting the dual nature of their role in both social control and scientific study. Prisons have emerged as a form of punishment in the context of industrialism and modernity, replacing earlier forms of punishment such as public hangings, in which social conformity and rule obeying were utilised as forms of control. The usefulness of prisons is nuanced and complex, as they serve as a form of state power to exert control over individuals and enforce social obedience. Prison systems typically have inadequate resources and inadequate rehabilitation and rely on safekeeping prisoners linked to their colonial past (Baffour, 2021). Prisons often fail in their rehabilitative purposes, as they neither reform nor rehabilitate (Workman et al., 2022). Foucault (1977) argues for the need to explore alternative forms of punishment that focus on rehabilitation, highlighting the need for a more humane approach. This perspective is particularly relevant given that prisoners are often from lower social classes and face harsher penalties for minor offences, as noted by Fagan and Meares (2008). Addressing these disparities through rehabilitative methods could help mitigate the disproportionate and punitive treatment of marginalised individuals in the criminal justice system. For example, Australia’s Aboriginal population sees punishment and incarceration occur for crimes that would usually only attract fines, as evidenced in the case of Western Australia where an Aboriginal woman reporting domestic violence was placed in jail for eight days for unpaid traffic fines and died in prison due to untreated septicaemia (Lockwood et al., 2023; Workman et al., 2022). As Anthony and Stanley (2023) argue, criminal justice systems are based on structures of disadvantage that ensure some people can have their cases dismissed and others cannot, a concept they link to Whiteness. While Whiteness is beyond the scope of this chapter, it is imperative to note that this system disadvantages all people in different ways across their various intersections, with calls for the decolonisation of research and practice in criminology (Carrington et al., 2016).

491

492  Handbook of sensitive research in the social sciences This chapter discusses the inconsistency in prison conditions, administration, experiences, staffing, and the moral, intellectual, and practical challenges that impact undertaking research within prisons. It presents an overview of how corrective services work in Australia, issues of incarcerated inmates, and challenges across the literature. The final section uses a personal case study relating to the experiences of the authors in undertaking practice and research within an Australian prison and why prison research is sensitive research.

HOW CORRECTIVE SERVICES WORK IN AUSTRALIA An understanding of how the corrective services system works in Australia is vital when undertaking research in prisons, as it allows for an informed understanding of the ethical and moral requirements to protect inmates’ rights and ensure the integrity of research. Understanding the environment and protocols within the system helps to understand how to gain informed consent without any coercion. For instance, power imbalances between researchers and prisoners can undermine voluntary informed consent. Safety and security protocols ensure inmates and researchers remain safe with minimal disruption to research activities. Australian prisons have formal and informal cultural and systemic characteristics that influence the behaviour of inmates and staff; understanding these at some level helps to shape a project and ensure it is sensitive to the context inmates live within every day. In Australia, correctional approaches typically begin with state and territory-based police officers, who are responsible for preventing, detecting, and investigating a crime (Daly & Sarre, 2017; Findlay et al., 2014). Officers are also involved with other law enforcement agencies, such as the Australian Federal Police, Customs and Border Protection, and the National Crime Authority, when necessary (Findlay et al., 2014). Alleged offenders are apprehended by the police, who respond in one of two ways: (1) through non-court processes, utilising diversionary conferencing or cautions, or (2) through the courts (Findlay et al., 2014). Criminal offences charged within higher courts generally involve the prosecution or defence, who determine the defendant’s verdicts. When an offender has a guilty verdict, three main actions are available. First, offenders may receive sentencing without detention, such as fines, cautions, or bonds. Second, offenders may receive a sentence involving supervision within their community for educational or reparative purposes. Third, a sentence may involve detention within a prison or other institution (for instance, forensic hospitals) or at home (Daly & Sarre, 2017). Alternatives to imprisonment, such as justice reinvestment initiatives, restorative justice, and non-custodial penalties for youth and adult offenders, are becoming more mainstream but are not yet as prevalent as the more ‘traditional’ forms of punishment (typically incarceration) (Workman et al., 2022). In Australia, fines comprise the most common sentencing outcome (55 per cent) for defendants found guilty in court (ABS, 2021). Sentencing outcomes are utilised as a form of community protection (JCA, 2014), where offenders may be removed from the community or issued a non-custodial penalty. It also acts as a form of community denunciation, relaying the unacceptability of the offender’s conduct (Bonta & Andrews, 2016). Sentencing is further used for rehabilitation and restorative justice. On the one hand, the prevalence of fines may be attributed to the reliance on road traffic offences, comprising 34 per cent of principal offences (ABS, 2021). On the other hand, this may be due to the over-policing of road fines as an easy way to guarantee revenue increases (Workman

Challenges for meaningful participation in prisoner or corrective services research  493 et al., 2022). Arguably, this creates a vicious cycle of ensuring poverty as ‘poor’ people often cannot afford to be fined or pay fines, yet they can be imprisoned for unpaid fines. In Australia, imprisonment (in theory) is often considered the last resort and most extreme outcome for sentencing cases, as Australia eradicated the death penalty under the Death Penalty Abolition Act 1973 (Law Council of Australia, 2019). Justification for sentencing is often grounded in trying to deter other community members and create a sense of justice.(De Castro Rodrigues et al., 2019). There are many elements through which fines and imprisonment ensure particular ‘types of people’ remain disadvantaged. For example, the fines system has no presumption of innocence like in the criminal justice system. Homeless people, people with disabilities, Indigenous people, young people, and recent refugees and migrants disproportionately receive public transport and public spaces fines (Wei et al., 2018). Standard penalties can have a disproportionate outcome, as fines often exacerbate overstretched budgets for those who already face financial hardship. This often, in turn, impacts basic living expenses such as food and shelter and causes people to default on other bills, resulting in significant amount of stress and impact on mental health (Centre for Justice Innovation, n.d.). Accumulated unpaid fines and mounting debts can impact broader life circumstances, hardship, and disadvantage. For instance, Indigenous communities are often affected by unpaid fines leading to the removal of their driving licence, receiving arrest warrants or jail time, impacting caring responsibilities, adding further contact with the CJS, and entering a vicious cycle of further penalties (Centre for Justice Innovation, n.d.; Wei et al., 2018). The adverse consequences lead to higher levels of disadvantage, with some being pushed into destitution, instability, stress, and even death. For instance, in 2014, police were called to a home for a domestic violence incident. Upon arrival, the complainant, an Indigenous woman by the name of Ms Dhu, was given a background check and found to have AUD3,622 in unpaid fines. Ms Dhu was arrested and detained at the police station lock-up. Ms Dhu complained of rib pain and was taken to the hospital, where the doctor diagnosed her with ‘attitude problems’. Two days later, Ms Dhu suffered a serious decline in health, crying and complaining of pain; however, it was thought she was faking her symptoms. Video footage later revealed officers dragging her out of the cell after finding her unconscious. Ms Dhu died later that day. The coroner’s report found Ms Dhu had died from pneumonia, septicaemia, and complications from rib fractures as a result of domestic violence (Ceranic, 2015; Perpitch, 2016). These elements of the criminal justice system create a complex and challenging environment for researchers. Researchers must navigate ethical considerations and the diverse needs of these disadvantaged populations. Promoting equity and justice reforms requires a great deal of devotion and understanding, which ensures that prison research may continue to be challenging for researchers.​

WHAT ARE THE ISSUES FOR INCARCERATED INMATES? Undertaking research with prisoners can be sensitive due to the fundamental deprivation of liberty and the ongoing human rights challenges faced by incarcerated individuals. According to the United Nations Office of Drugs and Crime (UNODC) (2023), imprisonment fundamentally deprives individuals of their right to liberty. While this deprivation does not necessarily restrict other human rights beyond those inherent to being in prison, inmates still encounter some human rights challenges. For example, the United Nations, specifically the UNODC,

494  Handbook of sensitive research in the social sciences

Figure 33.1  Complex and challenging environment for researchers doing prison research retains the authority to enter prisons at any time to ensure individuals’ rights and prevent violations of their liberties. This is essential to ensure that prisons comply with the United Nations Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (UNCAT) (United Nations website). Given that imprisonment involves significant restrictions on personal freedoms, and considering the UNODC’s role in monitoring and safeguarding these rights, research involving incarcerated individuals must navigate ethical concerns about their vulnerable status and ensure compliance with international standards to prevent any further infringement on their rights. In Australia, it is not known why the former New South Wales Premier Dominic Perrottet denied United Nations officials access to a prison (Rose & Gillespie, 2022), undermining the prison system’s legitimacy. Being a member state of the United Nations, Australia is subject to review at any time to ensure the conditions of prisoners meet UN standards. The former premier denying UN officials is considerably problematic as the premier claimed there were more human rights abuses occurring in other countries. However, if there is nothing to hide, there is nothing to be lost from allowing people to conduct their work. Between 2016–2018, Human Rights Watch (HRW) (2018) sought to document the prison situation for those with

Challenges for meaningful participation in prisoner or corrective services research  495 disabilities. However, New South Wales, the largest contributor to the Australian prison population, denied HRW access. As a result, the HRW report could not get lived experience information. Instead, they relied on information from former prisoners, service providers, government officials, and family members, to name a few. Australian prisons can cause extraordinary stress and trauma due to multiple violations of human rights (HRW, 2018). Imprisonment significantly affects individuals and families living in poverty; when an income-generating family member is imprisoned, the remaining family members must adjust to the loss of income. Incarceration creates a cycle of impoverishment for the incarcerated inmate and their family. This is particularly relevant to Indigenous groups when discussing broader social determinants of health. There are numerous public health consequences for people in prison, such as health conditions that are created or aggravated by incarceration. Health conditions can stem from the prison environment itself, or pre-existing health conditions can be exacerbated. For instance, pre-existing mental health conditions such as depression, post-traumatic stress disorder (PTSD), and anxiety can be worsened by the prison’s living conditions, such as overcrowding and unsanitary conditions (Pękala-Wojciechowska et al., 2021; UNODC, 2023). Overcrowding and isolation can cause serious degeneration of mental health. There is a large association between overcrowding and psychotic and suicidal behaviour, particularly in isolation cells (Heard, 2019). The restriction of human contact triggers psychological responses, including anxiety, hallucinations, and panic. Nonetheless, many prisoners’ mental health issues go untreated or undiagnosed, putting them at risk of self-harm or suicide (Australian Institute of Health and Welfare, 2023). However, the available evidence of the emotional needs of prisoners predominantly focuses on female prisoners, and male prison research is sparse. A report on UK prisons recognised that the emotional challenges faced by men included a broad range of emotions, and therefore the research is highly complex. For example, those with longer sentences and older men experience many emotional changes as they face ageing and death (Perrett et al., 2020). Chronic diseases such as diabetes, hypertension, and respiratory disease can worsen due to inadequate exercise, diet, and inconsistent treatment. Many prisoners receiving medication or treatment before they enter the system can be left waiting for medication and to be reassessed, leading to poor mental health or withdrawal symptoms (Pękala-Wojciechowska et al., 2021). In turn, this leads to inadequate healthcare, with some prisoners experiencing severe health declines upon entering a prison facility (Schafer & Moir, 2023). For example, some prisoners have died in prison from preventable conditions such as an asthma attack (Lockwood et al., 2023). In Australia, entitlement to the universal national healthcare system, including access to pharmaceutical benefits, is restricted when entering prison. Furthermore, there are no national standards for measuring the quality of health services or prisoner outcomes. Currently, multiple stakeholders deliver health services, resulting in evidential gaps (Kendall et al., 2020). Furthermore, treatment options differ from state to state in Australia, such as the Pharmaceutical Benefits Scheme (PBS), which makes it difficult to access medication, especially for those prisoners withdrawing from drugs or alcohol (Australian Institute of Health and Welfare, 2023). Yet, there is a significant drug-related health risk for those in the prison system, as around 65 per cent of people entering prison are illicit drug users. Those with existing substance abuse issues also lack proper treatment and support within the prison system.

496  Handbook of sensitive research in the social sciences Usually, due to the prison capacity rate, prisoners are moved around. The transfer of prisoners creates a distinct environment for researchers. Further, self-inflicted injury and sexual assault are also noted as health effects of incarceration. For those who are at risk of self-harm, being placed in an observation room or crisis centre is equivalent to being placed in solitary confinement. The lights are on 24/7, and there is no one to speak to; they wear suicide gowns and are made to eat with their fingers. This happens to prisoners while they are already in a crisis situation (Sharma & Braunschweiger, 2018). Human Rights Watch (HRW) (2018) described prisons as a ‘toxic environment’ that has negative effects on prisoners, with one woman with a psychological disability spending 28 days in solitary confinement. When granted access to exercise, she was placed in handcuffs and connected to a body belt to restrict her movements. Correctional officers whistled at her like a dog and mocked her. There was no toilet facility in her room, and she was made to use a cardboard urine test container (Human Rights Watch, 2018). Prisons are ill-equipped to address the complex needs of those with a disability. Prisoners who have a disability are often sexually assaulted; however, due to reprisals, fear, and stigma, documenting sexual violence is extremely difficult. The prison system lacks identification and proper assessments of those with a disability and relies on self-identification, which can be extremely problematic, particularly for Indigenous people. Many prisoners are not conscious of the fact that they have a disability, and there is no equivalent Indigenous word for disability within traditional languages. Those who have not been diagnosed before entering the system are hesitant to self-identify as having a disability due to stigmatisation. Those with cognitive disabilities find navigating the rules of the prison system debilitating, and often, prison staff take punitive action in the overuse of solitary confinement (Human Rights Watch, 2018; Sharma & Braunschweiger, 2018). In some instances, research suggests that overall health can improve due to reduced alcohol and drug use, as well as consistent meals. The Committee on Causes and Consequences of High Rates of Incarceration (Committee on Causes and Consequences of High Rates of Incarceration et al., 2013, p.1) put it this way: ‘Prisons are coming to function as a massive organ of delivery for public health for people who are involved in the criminal justice system’. Prisoners have the unique opportunity to get screened for and diagnosed with infectious diseases, as they often evade the healthcare system prior to imprisonment. However, in general, custodial systems create many health challenges, particularly for minority groups, such as Indigenous people, as they are disconnected from land, culture, and language and therefore experience significantly poorer health. Aboriginal men and women experience discrimination and institutional racism, such as being stereotyped and not being listened to, and inequitable healthcare with restrictions to Aboriginal community-based healthcare (Kendall et al., 2020) Importantly, prison health is public health; however, discussing health conditions may be a sensitive area in which this vulnerable community may fear disclosing due to the worry of repercussions, such as being labelled or fearing prison staff. Researchers can face challenges with confidentiality, as prison settings are constantly surveilled and have limited private spaces. Further, accessing prisoners’ health records for preexisting health conditions and assessing the influence that the prison has on health and wellbeing outcomes makes it challenging for researchers to gain accurate information. Adding to the complexity of researching health and well-being is that in Australia, health services can be delivered by the government health department or corrective services (HRW, 2018).

Challenges for meaningful participation in prisoner or corrective services research  497

WHY PRISON RESEARCH IS SENSITIVE RESEARCH By virtue of being deemed a vulnerable population, prisoners are often placed in precarious positions due to their incarceration (Liamputtong, 2007; also see Chapter 1 in this volume). Moore and Miller (1999) identify that members of vulnerable populations are doubly vulnerable, as they may experience circumstances that diminish their autonomy. Prisons have become environments that exacerbate vulnerabilities. As noted throughout this chapter, there are many elements that contribute to why prisoners are vulnerable; however, the following section unpacks the next element of vulnerability, which is sensitivity. Prison research, being inherently sensitive, presents ongoing challenges that involve specific risks. These risks not only need to be managed but also acknowledged throughout the research process. These safeguards protect the researcher and the researched. This section identifies these safeguards, as well as moral, intellectual, and practical challenges that may exacerbate the sensitivity factor for prison research. Figure 33.2 identifies these factors as identified by the authors, followed by this section’s firsthand reflection on how this can influence research outcomes.​

Figure 33.2  The sensitivity factor for prison research

498  Handbook of sensitive research in the social sciences System Complications The UNODC (2023) posits that any prisoner in a correctional facility has additional layers of vulnerability that can influence the type of engagement prisoners have with prison staff and members of the non-incarcerated community. Foucault (1977) argues that prisons as a form of punishment have become an overextension and abuse of power exercised by one group of people over others. Foucault (1977) also critiques the prison system as an abuse of power, highlighting how institutions wield authority over individuals. For researchers who are outsiders to prisons, navigating this complex social environment, with its distinctive language, strict hierarchies, and limited access, can indeed be daunting (Adams, 2021). Understanding a Relatively Unknown System as an Outsider As researchers who are outsiders and have not visited a prison or conducted prior research, the entire system can feel overwhelming. The entire social environment of a prison differs markedly from any other community or health setting, encompassing unique language and acronyms, restricted access to buildings, hierarchical structures, and strict routines (Adams, 2021). Before a study design is developed, initial conversations with prison staff and site visits reinforce elements of being an outsider. It is important for researchers to overcome the unfamiliar environment to collect the voices of insiders within the prison, as they understand their experiences in detail more than anyone else (Fine & Torre, 2006). Double Ethics Research generally involves the ethical approval of a university ethics committee; however, researching within the prison system requires two approvals: the university and the prison system. The ethical approval from the prison system is more detailed and collected first before university approval is obtained. The requirement for double ethics adds complexity and a greater time commitment to the study compared to other research. Relying on the prison system for approval also shapes the knowledge coming from the system, with one example of a study not being approved or being altered (Watson & van der Meulen, 2019). Consent Given that prisoners are in a controlled environment, the power dynamic between the researcher and the researched becomes unequal. These power imbalances can sometimes lead to issues such as informed consent (Oot Hayes, 2006). Ensuring informed consent is crucial in research, especially in the challenging context of prisons. Factors such as literacy, communication skills, and cultural or linguistic barriers can hinder participants’ understanding of the information provided (Johnson et al., 2015). Participants may disclose risks of self-harm or harm to others, necessitating mandatory reporting to safeguard public safety. Researchers must clarify to potential participants that disclosures of security risks or crimes may be reported to authorities, even if charges have not been filed (Cowburn, 2010). Consequently, researchers must navigate the delicate balance between respecting confidentiality and ensuring public safety, as highlighted by Cowburn (2010).

Challenges for meaningful participation in prisoner or corrective services research  499 The Researcher and Researched Relationship—A Precarious Position Additionally, there are a few fundamental issues associated with engaging with a researcher for an incarcerated inmate. Notably, Marquart and Roebuck (1985) found that prisoners who engage in research projects are often detrimentally labelled as snitches. Based on prison vernacular, a snitch is considered a rat who curries favour for additional benefits while imprisoned (Åkerström, 1987). They are seen as informants, including guards who tell on other prisoners engaging in illicit activity. The perception is that disclosed information can be used to negotiate a reduced prison sentence, despite this often not being the case for researchers researching prison experiences (Pyrooz, 2021). This perception may also be applied to research outputs to bring the legitimacy of the research into question. Institutional Constraints—A Highly Controlled Environment Prisons, by the nature of their design, are highly controlled and regulated environments. Whilst incarcerated, prisoners are given three meals a day, structure, and routine; they are told when to wash and when to socialise, among other forms of control. Indeed, many prisoners create their own routines around these mandated tasks set by the system to create a more positive experience for themselves (Ricciardelli & Memarpour, 2016). Prisoners undertake paid work in prison; they can access services such as medical care, have access to visitation, activities, canteens, and welfare checks. Smoking has been banned in prisons in Australia for some time (VicGov, 2024). These highly regulated spaces allow for routine and structure and, for some, a safe space, with some prisoners quickly reoffending back into prison so they do not risk issues such as homelessness. Due to the highly controlled nature of the prison environment, researchers are also placed under those same mechanisms of control (Drake, 1998). Traditionally, prisoners were easily accessible, but now prisons have become overly protective and restrictive (Lučić-Ćatić, 2011). These restrictions can make it more challenging to engage with prison research, particularly in terms of accessing them. How Reliable is the Data—Issues Impacting Data Collection Some of the challenges associated with the reliability of data are based on the design and structure of prisons. For example, conducting prison research may be challenging due to the nature of the research, as prisoners are vulnerable people. De Viggiani (2007) identified that replicating studies or interventions may be difficult due to each prison being run and governed slightly differently. For example, researchers may have an excellent relationship with workers at one prison, while at another, the relationship may be difficult due to different or conflicting priorities. There is also the unspoken prison code that shapes the norms, customs, mores, and behaviours of the prison community (Sykes, 1958; De Viggiani, 2007). As such, these challenges may exacerbate the sensitivity of research further, in turn impacting data collection and even study and intervention replicability. Transient Nature of the Prison Populations Cochran (2019) notes that prisoners are not a homogeneous group and, despite being deemed as such, have diverse needs. However, the transient nature of prison means people are transferred

500  Handbook of sensitive research in the social sciences routinely between prisons for different reasons, sometimes for protection and other times out of necessity. This can influence the researcher/researched rapport, as many researchers may not be informed until after the participant has been moved. Additionally, prisoners being transferred can impact the data collection process, making it more challenging to obtain meaningful research. The Who Cares Factor of Prisoners Prisoners are often treated with a broad brush as deviant criminals who should be locked away so that society does not need to engage with or care about them (Adetula et al., 2010). It becomes quite easy to dehumanise prisoners; yet, many prisoners have experienced adversity. Research suggests that prisoners have low literacy levels, disrupted family and educational histories, and are more likely to have been homeless before incarceration, in most instances experiencing abject poverty and personal safety concerns (Australian Institute of Health and Welfare, 2023). Yet, despite these factors that lead to someone being placed in prison, they matter.

WHY PRISON RESEARCH CONTINUES TO BE SENSITIVE RESEARCH: A REFLECTION FROM THE FIELD In this section, we will include a reflection by one of the authors, Arianne Reis, on her research conducted in the prison. As discussed in the paragraphs that preface this reflection, there are moral, intellectual, and practical challenges related to doing research in a prison environment. My experience involved all of these. I was challenged morally by the system that I reject; I am a prison abolitionist (Davis, 2013), and working within a system that I oppose was morally testing, particularly when many, if not most, of the prisoners with whom I was working were institutionalised and believed that it was right and fair that they were punished for the crimes they committed. As Schinkel (2014) has demonstrated, prisoners tend to accept their sentences as a way of dealing with the fact that they are the recipients of the punishment—this is particularly true for long-term prisoners. My experience researching for around eight months at a high-security prison with ageing prisoners supports Schinkel’s (2014) findings and highlights the high level of institutionalisation of ageing inmates, who are not only ready to conform but who would tell us that we too had to conform to the anachronistic rules of the prison. An incident that occurred was particularly challenging for me. As a Brazilian, I have many times been labelled by Australians, New Zealanders, Americans, and northern Europeans as being too ‘touchy,’ meaning I touch and hug people too much. I strongly believe that touch is an important communication tool, particularly when we want to demonstrate emotions (Hertenstein et al., 2009). In fact, research has confirmed that touch can alleviate perceptions of loneliness (Heatley Tejada et al., 2020). With this in mind, when I was told by an inmate that he had experienced suicidal ideation that morning and that our class had changed his mood and he was feeling a lot better now, I touched his shoulder, demonstrating my appreciation but also my care and empathy for his situation. I was developing a good rapport with this ageing inmate through our piano classes: he was teaching me how to play as part of our leisure intervention programme. As my notes after this session demonstrate, I was shocked and upset

Challenges for meaningful participation in prisoner or corrective services research  501 when a security guard came to tell me later that morning that I could not touch or be touched by any inmate at any point. So the guard at the end came and told us that we’re not supposed to touch any of the inmates and they’re not supposed to touch us. For safety reasons. And it was probably me - very touchy and I feel that it’s so so important to create a connection and just to give them, show them some caring and some affection in a way, just something that they don’t have at all and I just feel really devastated that it’s the case. And it’s not like I, I don’t think, I was inappropriate in any of that, it was just like really simple, common […] Yeah, the reason why I’m kind of really upset about this, of course I know I’m more of a touchy person than most Australians, but I think there’s a, well, one because I believe that, you know - of course there is a boundary and I’m aware of those boundaries but I feel like there’s just so much that we take away from [them], you know, like, so much that they, that they lack so much the human experience that not being able to put the hand on the shoulder and say, it’s okay, like what happened today. So, [name of inmate], I had my piano lesson with [name], and it was great, and towards the end he said something about his day starting really bad. And that this had made his day. And I said, why did your day start bad? And he said, he was almost in tears, and he said, I didn’t want to live, I don’t have any purpose, I don’t have family outside of here, I don’t have a house to go to, I have one friend outside who puts money in my bank account every month, but that’s about it, that’s all I’ve got. And he said, but you made my day. And I know that I gave you something, but you made my day. And he was really emotional.

While some may argue that there are valid security reasons for such a blanket policy, my intellectual opposition to it is that it does a lot more than keep ‘people safe’; it does, instead, create separation, isolation, disconnection, and eventually a sense of despair and lack of humanity among inmates that, instead of rehabilitating, leads to the deterioration of mental health conditions. Research has demonstrated that the current ‘mainstream’ prison system in Australia and other developed nations—particularly the US where much of this research is conducted— does very little to enable rehabilitation and instead provides an environment where inmates are dehumanised and stripped of all their rights and what makes all of us functional citizens in our communities (Bagaric, Hunter, & Svilar, 2021; Bloom & Bradshaw, 2022; Davis & Shaylor, 2020). Intellectually, to witness such a clear disregard for the evidence in this field without having the ability to do much to address it is a challenge to research work in prison environments. Practically, there are a number of challenges involved with prison research, and some of them have been explored in the sections above. In the case of our work with ageing prisoners, one issue that has been particularly challenging refers to informed consent for participation in a qualitative study using an experiential methodology. While collecting data for quantitative studies can be straightforward in terms of getting a signature on a paper confirming consent to complete a survey and have that or other quantitative data used for research, such a process is not as simple with qualitative studies that use more engaged methodologies. In our case, it was fundamental to first develop rapport with inmates before even starting the ‘intervention’, given our project was all about the inmates developing their own plans for a leisure-based program. The approach utilised a generativity framework (Villar, 2012), where value is placed on the ageing process and what can be gained from ageing. Under this framework, we wanted to empower inmates to identify their skills, talents, passions and interests related to positive leisure and recreation activities and then teach or pass on these skills, talents, passions and interests to others, including ourselves as the researchers. But this process is a slow one, as inmates often struggle to identify positive experiences and skills when they are removed from their basic right to freedom (Sykes, 1958). It is also

502  Handbook of sensitive research in the social sciences not linear, and it involves constant renegotiation. For this reason, finding an appropriate time and space to confirm consent and then officially turn it into a signature on paper is very challenging. As such, researchers and ethics committees need to be creative and flexible but also extremely careful to ensure an empowered and informed engagement with the researchers and the research process.

CONCLUSION AND FUTURE DIRECTIONS Prisons neither deter criminal behaviour, rehabilitate, nor stop people from offending or reoffending. They are based on a model of punishment that removes crime and punishment from public spectacle to the private sphere, relying upon repeat ‘customers.’ This anticipation continues to see more prisons being opened as people become incarcerated for exceedingly minor crimes, such as unpaid fines, public intoxication (despite not being an indictable offence), mental health issues, and so on. Given the ongoing challenges and the lack of recognition of the importance of the social determinants of health as factors that lead to or exacerbate criminality, both crime and punishment require a shift from an exclusive law enforcement focus to both a law enforcement and public health issue. These attitudes remain challenging for researchers, as is the fact that people who may have invaluable insights may not be accessed in a timely manner. The prison system also faces challenges with addressing deaths in custody and considering potential reforms. People are treated indifferently and are moved to suit purposes and needs. There is a lack of trust as prisoners may not feel safe disclosing their experiences. For instance, Ms Dhu, who died in custody due to unpaid fines, was deemed to have attitude problems when she engaged with doctors after crying nonstop. If she had come into contact with researchers, how could Ms Dhu herself trust a system that did not take her concerns seriously and treated her as a second-class citizen? Prison research must not be treated as a homogenous experience. Even though prisoners themselves fall under the banner of ‘criminals,’ their experiences are nuanced, and prison research must accommodate that nuance. The broad spectrum of identity is necessary for meaningful change, acknowledging that even if a group of people is deemed criminal for unpaid fines and incarcerated, they all have diverse intersections. All parts of their identity and lived experiences must be considered, yet only deeming prisoners as criminals continues to dehumanise them. While they are prisoners, they are also human beings whose collective humanity must be considered. In the case of Ms Dhu, she was experiencing family violence, yet the system was only concerned with her unpaid fines. That system did not help with her family violence; she was incarcerated for unpaid fines, dying in prison as a result. Cases such as this continue to make prison research challenging because both a broader cultural attitude and the carceral system define criminals as a homogenous group, regardless of their offences, and fail to account for ageing or unwell individuals. Undertaking sensitive research in prisons demands a nuanced approach that prioritises ethical considerations, respects the dignity of incarcerated individuals, and navigates complex institutional dynamics. Researchers must balance their academic objectives with the need to protect vulnerable populations, ensuring that their work contributes to meaningful improvements in the correctional system. The future of prisons is likely to be shaped by evolving perspectives on justice and rehabilitation. It is hoped that we will see progressive reforms that emphasise restorative justice, mental health care, and educational opportunities, aiming

Challenges for meaningful participation in prisoner or corrective services research  503 to reduce recidivism and promote successful reintegration into society. As prisons transform, research will continue to play a critical role in informing policies that foster humane and effective correctional practices.

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34. ‘Someone would have to die for me to give up’: the experience of researching suicide Laura Patterson

INTRODUCTION At the time of writing, I am undertaking a doctoral research degree to explore youth suicide. The title quotation was spoken by me to my supervisor in July 2022. She had contacted me due to concerns about my lack of focus, and in return, I had admitted that studying had become secondary to glorious days out and copious distractions. My one day a week for study had been neglected for several weeks in a row, which she had noted. In response to her questions about my ongoing commitment and motivation for the PhD process, I was emphatic in my assertions, underlining my re-commitment by stating, ‘Someone would have to die for me to give up.’ The irony encapsulated by those words remained untold until the end of that summer break in 2022. In 2021, The Samaritans reported that 454 young people aged 15–24 years were registered in the UK via the coroner as having died by suicide. Sadly, there has been a marked increase in death by suicide since 2013, and this is reflected in an increase in the number of reported suicide attempts and instances of serious self-harm (RCPCH, 2023). In response to this considerable upturn in suicide deaths among young people, The Samaritans have stated their commitment to expanding the research base, particularly with more qualitative research. For each death reported as a suicide, many more young people will have made a suicide attempt or multiple suicide attempts. Each attempt that does not result in death represents an important opportunity to prevent future suicide. My study aims to use qualitative accounts of young people who have made a serious suicide attempt. Specifically, my research explores the lived experience of young people aged 16–24 years who attempted during that time in their lives, with a focus on the communication of suicidal behaviour leading up to that point. Twelve participants were interviewed who had made one or multiple attempts. To add a fresh dynamic to the extant literature, I created a dual perspective by interviewing a friend, family member, or professional from the participant’s network who may have seen or heard that communication of suicidal distress. Thus, a further four interviews were conducted with people in the network of those primary participants who undertook the attempt. The focus of this chapter is the experience and meaning of this research for me as the researcher. Suicide fits most definitions of a sensitive topic as proposed by those in the field exploring the nature of ‘sensitivity’ (Liamputtong, 2007; Dickson-Swift et al., 2007; Brewer, 2003; Fenge, 2019; also see Chapter 1 in this volume). All sensitive research demands an ethical approach to protect the participants and the researcher, and by adding knowledge about the experience, risk can hopefully be minimised. The chapter will provide details of a reflexive journey through three parts of the research process—the robust preparation required prior to embarking on sensitive research, adapting to the experience and reality of sensitive research, 506

‘Someone would have to die for me to give up’: the experience of researching suicide  507 and sharing learning from the experience of conducting sensitive research such as suicide, providing a framework for good practice including strategies for survival and completion. Of course, no research journey is truly linear; it is iterative in nature as it shifts back and forth with overlaps, intertwining, and the starting of one part when another is not yet complete. At times, it is like looking over a precipice at disaster and defeat and, at times, walking beside quiet waters. It is only for this chapter that I have kept the journey neater and tidier than it was in practice. I begin with the groundwork phase—quite vital to have in place before building anything.

‘PREPARATION IS EVERYTHING’ Researchers approach new projects not as unstained sheets of blotting paper but often as people with lived experience. As Robinson (2023) suggests that ‘preparation is everything.’ I embarked on my research as an emotional and relational being, with a preconceived view of the nature and path of the research I was about to conduct. On approaching my study and recognising its sensitivity, I reflexively engaged with the identification of my strengths and vulnerabilities. A model proposed by my university, the ‘Vitae researcher development framework’ (Vitae, 2023), helped me to self-audit my skills and identify gaps prior to starting sensitive research. I recognised that while some of the skills were inherent in my lived and work experience, other skills needed to be actively taught to me. Research that explores the process of collecting sensitive data has highlighted that skills, preparation, and training are key factors in minimising the impact on sensitive researchers (Johnson & Clarke, 2003). In the section below, I detail my attitude and approach to the preparation for the research and provide a checklist designed to stimulate self-reflection for researchers who are embarking on similar research.

‘I HAVE SOME SKILLS BUT COULD ALWAYS LEARN MORE!’ This quote from my ‘Vitae researcher development framework’ (Vitae, 2023) expresses my attitude and openness to self-development. I am a senior social worker with over twenty years’ experience working with children and young people, and thus I felt well-equipped to receive narratives of distress. The interplay of the world of social work and sensitive research is helpfully explored in a book by Haider (2021) with practical ideas for managing emotion when constantly absorbing the day-to-day social reality of others’ lives. In addition to my experience in social work, I worked for five years as a youth worker and found it easy to relate to teenagers, particularly around sensitive areas of their lives. At the acute end of mental health care, I worked with adults and young people in a secure unit for mental health provision, most of whom were engaged in self-harm, suicidal ideation, and action. I felt in a robust place on the approach to my research. Research experience had been gained previously when I conducted empirical research with young people on another sensitive topic (eating disorders) as part of a master's in child and adolescent mental health. In 2018, I created a wellbeing café and remain the chair of the board of trustees. This facility supports those in need of emotional and mental health support in the community and signposts to acute and crisis provision. Simultaneously with my PhD

508  Handbook of sensitive research in the social sciences research, I worked as a co-researcher on an NIHR-funded sexual violence research project, PROSPER, where support was key due to the sensitivity of the topic. Despite this experience, gaps remained. As a first step, during lockdown, I completed two counselling qualifications to ensure sensitivity in my communication and a robust approach to safeguarding. Counselling skills feel invaluable for preparing a researcher to show empathy, be reflective with participants, and listen for nuanced information in an interview. However, counselling and research interviewing still require different approaches (Nelson et al., 2013). I did encounter participants who hoped for ‘free therapy,’ and whilst research interviews can be cathartic, that was never my primary aim. I did, at times, lapse into therapeutic language or over-empathising, and I needed to be careful about taking a therapeutic stance with participants. Overall, learning counselling skills helped me prepare for navigating spaces in people’s lives that are sensitive and painful and I would recommend this approach to others. I intended to use unstructured narrative interviews for the first time, so I attended a narrative interviewing skills training course with the Sociological Research Association (SRA) to equip myself to use this method. I have since found out that the SRA has compiled excellent guidelines for conducting sensitive research (SRA, 2007) but these were not mentioned as part of the training course. The training did increase my confidence in my approach to this style of interviewing. I undertook one more training course to gain specific skills around suicide awareness and prevention called ASIST, run in the UK by Grassroots Suicide Prevention. It equipped me well for managing risk around suicide, both in the café setting and in interviews. For anyone involved in suicide research, I would recommend this course as part of their preparation work. I was equally keen to capitalise on the experience of others as a key part of preparing to commence fieldwork. In line with good practices from other examples of sensitive research, such as that by Leishman in 2023, I gathered individuals together to form an advisory group. These were professionals working in the field of suicide, adults who had made a suicide attempt, or family members of people who had died by suicide. We met only once, but I valued their views. They formed a supportive and informative group, providing feedback on my research design and commenting on the appropriateness of language used in written material, and I changed several elements as a result. I had worked hard to choose my supervisors carefully—one is an experienced suicide researcher, the other is a mental health nurse and counsellor, and together they represent a strong, supportive, and responsive team. As a vehicle for reflexivity, and as an outlet for the continuing processing of an inevitable emotional load, I used a reflexive journal as a tool throughout the research and can strongly recommend this to others. I include extracts from this journal in the chapter.

‘I WANTED TO COMMUNICATE THAT I WAS IN PAIN AND NEEDED HELP …’ In contrast with the skills, experience, and training that positively equipped me for the research, I also recognised that having lived experience of a suicide attempt in my mid-teen years could be a vulnerability. These words above are a reflection of that difficult time. From the outset, I decided to disclose the past attempt and cite it as a precipitating factor in wishing to explore youth suicide in my PhD interview. To allow myself to process that event and to

‘Someone would have to die for me to give up’: the experience of researching suicide  509 prove to others that I had processed it, I wrote an autoethnographic essay detailing the suicide attempt. I then shared the piece with research colleagues at the same university and with my supervisors. Autoethnographic writing can purposefully enable the researcher to process emotions and experiences associated with the research, leading to increased empathy for the self and others and fresh insight (Etherington, 2004). My experience was that it felt like a vulnerable but valuable process. I valued writing the piece because I bracketed my own experience so that I could fully focus on my participants. Equally, I felt that if I could share my difficult story, I would find it easier to ask others to share theirs with me in the research. I have included some extracts from that autoethnographic piece below. It is designed to encourage other researchers to use the writing process to ‘bracket’ their own experiences, biases, and opinions prior to embarking on research. I begin with some context. My gender saved me in early years and I was paraded to parties in pretty dresses and rewarded for my appearance…. As I began to grow and be less compliant in middle childhood, it was met with rejection from my mother … I felt displaced and unsure of my value because in no longer being willing to fulfil my role as ‘pretty little girl’ and neither could I enter the academic arena. Already devoid of any expression of love or affection and now without value or belonging in the family structure, I felt abandoned and confused.

On entry to secondary school, behaviours designed to communicate pain escalated. I was drawn to other girls from difficult backgrounds, all eager to act out the pain of their individual experiences with a variety of punishing tools. Not only did we indulge in communal bulimia but one-by-one we started to self-harm. This linked with a fascination that I’d developed around death and suicide, and I purported no fear of death, even planning my own funeral. Media, though far more limited than in the present day, portrayed suicide as a romanticised opportunity for escapism and we collectively idealised those who were brave enough to take this way out …

I then went on in the piece to deliberately intertwine my story with suicide theory, allowing me to take a research-focused stance related to my own experience; this enabled me to see exactly how my experience fits into a wider commentary on suicide attempts as if my story were actually part of the research. Cottle (2000) utilises Family Systems Theory to explore family dynamics and attachment style as contributory factors in adolescent suicide … in a high number of adolescent suicide cases, there were family dynamics at play that influenced the suicide. Cottle (2000) highlighted the negative influence of a reduced sense of family cohesion (Patterson, DeBaryshe & Ramsey, 1989), parental strictness (Dusek, 1996) and most significantly, intense competition in the area of academic achievement (Harter, 1990). Furthermore, Minuchin (1974) purports that early experiences of enmeshment, in my case within the mother-daughter dyad, and links this to a feeling of internal chaos.

The main focus of my research is to explore communication that may be made around suicidal distress and, secondly, to explore who may have picked up that communication. Applying this lens to my own experience, it felt important to consider who in my relational network at the time could have fulfilled that role. In retrospect, I can see that I wanted to communicate my active feelings of distress and would have welcomed the opportunity for some positive intervention. I needed people to know how desperate I

510  Handbook of sensitive research in the social sciences felt and wanted anyone to help me put some boundaries in to create safety. Not for the first time in my life, I felt as though there were adults that had the ability to respond but were inert. This resonated with a view of myself as unworthy and made me feel as though I was drowning inside.

As with pieces of a puzzle, using theory helped me recognise some of the underpinning factors that led to my suicide attempt. Joiner’s work focuses on three main risk factors that, when simultaneously present, heighten risk. The first is ‘capability for suicide’ (Joiner, 2005) which aligns with my experiences of complex and developmental trauma. ‘Thwarted belongingness’ (Joiner, 2005) was a long-held feeling from early childhood that I did not fit within the family structure. The third contributory risk factor that Joiner (2005) highlights is around ‘perceived burdensomeness’ … This factor was not contributory to my experience of suicidal ideation.

With a focus in my research on all aspects of communication—verbal, non-verbal, direct or indirect, communication through any medium or form—I contemplated how different forms of communication had been important in my teenage world. … it’s clear that writing poetry that was ‘dark’ in nature was a naïve form of expression, but it was written furtively and kept secret. Additionally, my choice of books included texts by Sylvia Plath and Virginia Woolf, both of whom took their own lives. Thinking about these women and wondering about their pre-death struggles perpetuated a fascination around death by suicide and a sense that I was developing a viable way out for myself.

The night of my own attempt is lost to my memory because I had chosen to use excessive alcohol to create an impetus for suicidal action. A friend has since recalled the events of the night to me. She explained that I’d moved from the public toilet and climbed up the fire escape of a high rise building with the intent to jump from the top. She had called the Fire Brigade and they rescued me as I climbed over the edge at the top. If I had not been aware of my previous thoughts around suicide and self-harm behaviour, I may have questioned my motive or desire to die.

By writing, in effect, I became the subject of my own pilot study, enabling me to approach the wider study in a more prepared way. It demonstrated the value of a reflexive approach from the outset. My lived experience no longer loomed as an unspoken risk but a strength. A wider discourse on risk in sensitive research is considered below.

‘IF THERE IS ANY POSSIBILITY OF RISK PLEASE TICK YES’ Risk is inherent in any human research, but heightened risks are associated with sensitive research due to the potential for emotional harm (Dickson-Swift et al., 2007; see Chapters 1 & 3 in this volume). The Human Research Ethics Committee of any university (HREC) requires a detailed approach to ethics approval to encourage the researcher to identify and address all the potential risks to participants (HRA, 2023). In demanding this level of rigour, they can ensure that the researcher has considered, modified, and minimised potential risks as much as possible before embarking on the research.

‘Someone would have to die for me to give up’: the experience of researching suicide  511 Managing risk in human research projects has been written about extensively, along with suggestions for risk-reduction strategies (Shaw & Barrett, 2006). The focus of this chapter is to identify the risk to me as a researcher, which my supervisors identified because of the sensitive nature of the research. The focus of my ethics application was on my research participants; just one section mentioned the risk to participants and the researchers (HRA, 2023). In the ethics application, I emphasised that much more has been written in recent years on the risk of vicarious trauma to those researching sensitive topics. For example, there are now authors on the subject who strongly promote a need for reflexivity in sensitive research and support for researchers because of the embodied distress experienced through hearing stories (Dickson-Swift et al., 2007; Boden et al., 2016; Mallon & Elliot, 2021; see also Chapter 1). Boden et al. (2016) specifically identified a need for robust support systems throughout research after engaging in narrative suicide research, which presented emotional and physical challenges to the researchers. Therefore, I included risk reduction strategies for myself in the hope that the ethics committee would recognise a need to expand their duties. These are the strategies for protection that I suggested: • • • •

Support is required throughout the research project from supervisors, particularly in the lead-up to and following data collection. Supervisors who have the skills and understanding of sensitive research can offer targeted support. Access for the researcher to personal counselling with an opportunity to discuss research issues. Peer support from suicide researchers and others exploring sensitive subjects.

My supervisors had space to support my application in relation to risk, and this extract of their contribution details their absolute commitment to my protection as well. Crucially, she is mindful of the emotional reaction of herself and her potential respondents. To this end she has engaged with the literature and the practical elements of undertaking this type of the research; engaging with and taking advice from other researchers who have undertaken similar work in recent years.

With the skills audit completed and subsequent gaps filled via training opportunities, I felt in a strong position to embark on the research itself. I recognised that extensive work experience was beneficial, too. I had a strong shield of support through my two supervisors and an accessible, trusted personal counsellor who could be used in extremis. I had used the ethics process to explore any risk to my participants and myself. And whilst no preparation for sensitive research minimises all risk, I felt that I was in a robust position as I embarked on the research.

THE DANGER IN THE ‘DOING’ The careful preparation noted previously felt more worthwhile as I approached data collection, particularly as the second phase of the journey felt complex and convoluted. Exploratory research creates spaces for untold stories to ‘emerge,’ but that can feel dangerous for the

512  Handbook of sensitive research in the social sciences researcher (Dickson-Swift et al., 2007). This section explores difficulties with my recruitment process and interrogates all the moral and ethical issues that needed careful navigation as I moved towards interviews. In this section, I spend time considering the emotional and physical impact on the researcher, where I begin with an expected but difficult experience. Bereavement Leave My father was aged 88 when I started my PhD. I had considered that with a six-year part-time PhD, I might face his death during that time, and I was not far into the study process when it happened. The unanticipated struggle around his death involved trying to care for him from 100 miles away and coordinating other carers and hospital stays. All this took place during the worldwide pandemic, which made everything harder. When the end came, I needed to navigate my own grief while hoping to retain focus on work and study. Again, I used writing to process emotion and have written about the experience of his death during Covid in an edited work called Narratives of Covid (Borgstrom & Mallon, 2021). Immediately following my father’s death, my supervisors gently guided me toward taking a two-month study break. I initially resisted the idea that I needed time off but acquiesced to their suggestion and, in hindsight, can see the benefit. Having time off officially freed me from the guilt of having significantly disengaged from my studies. It also provided a timeframe for my return. After that time, I felt a renewed enthusiasm for my research and was able to return with focus and determination. Shortly after this, I was thrust into the recruitment process for the study. The Struggle to Find Participants Advertising the study to recruit participants for my research felt uncomfortable. Suicide talk is often labelled a ‘death taboo,’ a phrase reserved for sudden traumatic deaths such as suicide and murder (Chapple, Ziebland, & Hawton, 2015). There is a view that we should modernise death talk to move forward from death being a taboo subject (Walter, 1994). Yet, I developed a feeling that advertising the study to recruit participants could cause offence or upset. This sense of societal resistance impacted my impetus to start recruitment. I found myself rationalising and explaining my interest in suicide, being very tentative online about raising it as an issue and worrying about insensitivity. Consequently, I only utilised platforms where I felt ‘safe,’ such as Twitter (now X), and advertised to my closed Facebook profile—but this approach did not yield results. I had to shift my focus to recruiting via Snapchat, Instagram, and TikTok to gain access to an audience of young people. And still, talking about suicide with an air of seriousness in ‘reels’ and on ‘stories’ felt incongruous with the normally lighthearted humour on these platforms. As a last resort in recruitment, when I needed only two or three more participants but had exhausted other routes, I joined a number of suicide support groups for young people online. I found that in most groups, the advertising of research studies to gain participants was banned. More importantly, I soon witnessed a deep vulnerability in the members of these groups, with people posting final-sounding messages from a place of great despair and others offering support or condolences. I quickly recognised it as a place where I should not be and retreated. Sensitive research creates many complex challenges, not least with the recruitment process (Newton, 2017). In the end, practical support came via peer suicide researchers

‘Someone would have to die for me to give up’: the experience of researching suicide  513 who recognised these struggles. Beyond recruitment issues, other ethical and moral dilemmas unfolded as the journey progressed. Responding Well to Dilemmas in Recruitment Small-scale, participatory, sensitive, and qualitative research studies can sometimes create a dilemma when participants are known by the researcher. I had worked with one of my participants when she was an in-patient in a secure mental health setting. I reflected ethically on this, recognising that knowing one another in a professional setting created a power differential. I was also cognisant of her persistent and severe suicidal behaviour and was reticent to hear details. In discussions with my supervisors, we agreed she should continue. Later on, several other participants were recruited via the university, and due to the sensitive nature of the research, I was worried that confidentiality would be compromised if my supervisors recognised any details of their colleagues. Both supervisors assured me of their moral code of duty to keep identifiable content confidential, and we proceeded. Pre-interviewing, I first had an informal meeting with each participant. It became clear that one participant had not adhered to the requirement for a year to have passed since their last attempt. This created an uncomfortable dilemma, where I had to balance their protection with their right to choose to take part. Mitigating the risk involved double-checking the strength of their support system and liaising with my supervisors to explain, and the participant continued in the study. At the same juncture, another participant created a vulnerable account of their life story and emailed it to me pre-interview, leaving me concerned that they had mistaken the research space for therapy. I was keen not to bias the interview by having read their account. In the interview, she was raw with emotion and looking for an exploration of her experience that it was not within my role to provide. I emphasised that support was available if the interview had raised wider issues and was overt in stating the parameters of my own role as a researcher. A final point concerns a moral and ethical predicament which related to two-thirds of the primary participants. In my information sheet sent out to all prospective participants, I had suggested that each interviewee should identify a further participant who may have heard or seen their communication of suicidal intent. From my perspective, I had not envisaged that it would feel challenging. However, most participants were emphatic that they would not ask a loved one or professional to relive painful memories of a time when they were suicidal. I reflected on this in my journal. I’m also feeling a little frustrated with the need to ask participants as ‘gatekeepers’ about the likelihood of someone in their network taking part in research. They want to protect their loved ones from thinking about distressing thoughts/times. Whilst this is understandable, their loved one may have chosen to partake despite negative feelings.

Without sounding insensitive, I had no outlet for my disappointment and frustration. Instead, I processed my feelings and refocused on the value of their narratives. I had to shift the aim of my research, which was originally intended to have a secondary participant for each initial participant. I quickly learnt that setting out aims for research is vital, but so is the need to be flexible and adaptable because when you work with people, you are unable to predict how they will think, feel, or act. My sense was that I had not considered the fragile relational dynamic, where past hurts that were buried could no longer be raised or addressed. Perhaps

514  Handbook of sensitive research in the social sciences unsurprisingly, the data collection phase of my research presented many complex challenges too. When the Real World Touches the Research World The interviewing phase of any empirical research project is intense, particularly when the topic is sensitive and the data collection method is of a narrative form. Suicide research is a study of people on the edge of life and death, and I felt fearful that suicidal feelings would resurface from participants because of my probing and that someone might die as a result. This anxiety, and the traumatic nature of some of the content from interviews, meant there were times when I felt that help was needed quickly to unpack the emotions, pictures, and stories that became stuck in my head long after an interview concluded. There were also times when I needed to regain a sense of the research’s purpose and value, which had been paramount at the start in choosing to research this area. This part of the chapter details moments where moving forward with the research appeared hard or impossible because of the lack of control over where the participant takes you and because life outside of the research can collide with the research process and threaten any ability to continue. It helped me to have outlets already in place for offloading the emotional response to unexpected occurrences, such as graphic descriptions of suicide attempts and self-harm, the expression of severe psychological distress, or details of historical abuse and trauma. As I approached my first interview, I noted, ‘I know I am anxious... I can feel a knot in my stomach.’ My supervisors and I recognised the potential for harm to the participants and the researcher during this research phase and set up a system of pre-briefing and de-briefing around interviews. The opportunity for pre- and de-briefing represented more than ensuring my physical safety according to the university’s ‘Lone Working Policy’ (HSE, n.d.). All my prior experience and qualifications did not negate the risk of storing unprocessed emotion. My supervisors were attuned to my emotional safety because of who they are, not because it is written into research policy or guidance. Having them for robust support, alongside the use of my reflexive journal, meant I had outlets for the expression of vicarious trauma. From the outset, the content of the interviews was hard to hear. I reflected in my journal on my first participant’s story of trauma. *** told the most difficult and torturous story … It was unfiltered, heavy, and relentless, which is probably how she felt whilst it was going on. It was also protracted over many years and with broken trust from those who should have cared for and protected her. She was articulate and emotional …

In writing down my feelings soon after the interview, I was able to pinpoint the toughest moments: ‘At one point I felt I knew that I either engaged with the sadness of her story or protected myself (and maybe her) from overwhelm.’ This first interview affected me much more than I anticipated, and I found myself thinking about her and her story for days to come. This had a significant effect on my emotional well-being (Warr, 2004). She had invoked an unusually maternal instinct in me, which was partly due to her young age but mostly due to the abject lack of love and protection she had experienced. After creating rapport, it felt hard to finish, and I noted, ‘I told her she was brave for sharing her story. She said she felt unburdened … I felt a connection, a kinship and a pride in her that I didn’t deserve to have.’ The giving of

‘Someone would have to die for me to give up’: the experience of researching suicide  515 myself in the interview was unanticipated, and I was unsure if I could give to each person in the same way without drowning myself. It was interesting to monitor my feelings over the following few days—to see how long the repair took. ‘I felt an incredible heaviness at having borne witness to her whole story of trauma … I couldn’t shake the feeling of having intruded on someone’s life … I couldn’t think, couldn’t move on … Gradually over days I’ve managed to have it affect me less and less.’ In sensitive research, we provide space for participants to express the inexpressible. I had asked people to share their most distressing moments with me, and this they did. Very soon after this first difficult interview, one of my PhD supervisors required five months’ sick leave. That same month, my lead supervisor took extended leave due to stress. I had feelings of compassion for their difficult circumstances but felt a sense of abandonment at a crucial time in my research. The second narrative interview was even more complex and challenging. It detailed a high level of suicidality over many years of care in the criminal justice system and special hospital services. I found myself reliving moments from the interview, and I only had my journal as an outlet for the expression of those feelings. This extract is recorded a month after the interview. It’s telling that I’m only now able to write up about the previous interview with **** , it was traumatising, a visceral dread fills me … does the horror stay with me, because it feels quite unresolved still. I sometimes just catch myself thinking about aspects of it, some of the details of the attempts, wondering how anyone could do that to themselves. The focus was so much on the detail ... I reflected whether it is somewhat narcissistic or self-seeking to share with others the intimacy of your attempts, almost with glee, drawing them in to see their reactions. But this was unusual, and I have to keep that in mind, it is not typical.

I recognised that there was also an undeniable avoidance in transcribing the interview, which belied some unresolved trauma in the details I had borne witness to. I reflexively considered that I paid for a small number of interviews to be transcribed, with this being one. I provided a caveat to the transcriber, stating, ‘Just take care of yourself and stop and tell me if it’s too much.’ There is little consideration of the emotional impact of sensitive research for supervisors and transcriptionists (Gregory et al., 1997). Without the outlet of supervisors, I spoke to my husband about residual feelings from the interview but kept from him the graphic details that had left me feeling disturbed. I have come to understand in sensitive research that informal outlets for support via family and friends are compromised because of the taboo of the topic (Mallon & Elliott, 2021). After weeks without support, my lead supervisor demanded that the university provide some replacement support in the absence of both supervisors. The university suggested their Employee Assistance Programme, which provides six half-hour telephone counselling sessions that I internalised as a reflection of my ability to cope. Instead, I identified and requested a temporary supervisor, but they were unfamiliar with the topic area and consequently unable to support me with the complex research I was undertaking. Regardless, I continued with the interviews. Moments of difficulty emerged in parts of every interview, and each needed careful emotional attunement. The nature of exploratory research lies in the unpredictability of the direction of the narratives (Dickson-Swift et al., 2007). For example, one participant had been recently bereaved and was initially tearful but keen to continue. Another felt dissociated from their suicidal self and described it as like presenting difficult information about a detached

516  Handbook of sensitive research in the social sciences other. I could never predict which interviews would feel most challenging to navigate. My feelings ranged from, ‘I had a fantastic interview with someone a bit older than me, we got on well’, to, ‘I didn’t over-attach myself to her experience’. It did feel that the task of dealing with leftover emotions from interviews became easier to face as more interviews were undertaken. I either became more comfortable with the process or experienced desensitisation, which can occur with emotionally laboursome research (Dickson-Swift et al., 2007; see also Chapters 1 & 3). My supervisors returned to work and resumed their support in compassionate and caring ways. We added one more individual to the supervisory team to mitigate an unlikely repeat of the situation in the future. After discussing with my supervisors about lingering feelings of distress related to my second interview, it was suggested that I should have short-term counselling with my own counsellor, which the university funded. Once again, I felt supported and protected, and this time, the suggestion of counselling felt right and appropriate because of the understanding and respect I felt. A short while later, with incredible sadness, it became apparent that my new third supervisor had been bereaved by suicide within her close family network. Her expertise and attention to detail, which I had begun to benefit from, immediately stopped as she focused on home life. I was worried about her emotional welfare, particularly in relation to her ability to continue research on suicide. When she suggested a return to work later on, I was mindful that some of the content of my study could be inadvertently triggering, and it took a while to feel confident in sharing openly again. I had never imagined that suicide could intrude into my life even more starkly. However, midway through the data collection process, while I was away on a summer break in August 2022, a friend called me to let me know that a mutual friend had very sadly and completely unexpectedly died by suicide. My friend was a GP, stretched to breaking point in her job, and constantly absorbing others’ mental health difficulties while evidently feeling unable to stop and address her own. It was devastating news, and my thoughts were immediately with her family, grappling with immense pain. In the coming weeks, I began to think about my friend’s death in relation to my research. Often, the biggest questions in a suicide death are ‘why’ and ‘what did I miss?’ Through my research, I was engaged in exploring the verbal and non-verbal communication leading up to a suicide attempt, but neither I nor others, had spotted anything suggesting that my friend was close to ending her life. I could not reconcile continuing to research suicide communication when questions remained unanswered about her death. Shortly after her death, I wrote to our group of friends, Hi everyone, after [friend] died, I thought I couldn’t carry on with my PhD research around suicide (and how that’s communicated prior to a suicide attempt). And then after a while, I felt I had to, for people just like her, who couldn’t communicate how she was feeling. So, I spoke to my supervisors today to say I need to restart. I didn’t want it to seem insensitive if you see stuff about it; I’ve been on a journey and now I’m doing it for her, and others. I hope you understand x.

The feelings of pain around my friend’s death had negatively influenced my ability and desire to research suicide because, suddenly, it felt futile or tokenistic. I experienced it as one world colliding with the other. My experience introduced great complexity to continuing. It brought home the bitter reality of a suicide attempt and gave me huge insight through increased empathy for my participants and their families, lessening the emotional distance between us all. My

‘Someone would have to die for me to give up’: the experience of researching suicide  517 methodological approach is rooted in reflexive thematic analysis, related to finding meaning through experience (Braun, 2022). It took time to recognise that my desire to find meaning through my research had never altered and that this new experience added to the sad reality of suicide. I slowly returned to recognise the value of continuing. My friend’s husband believes, as do I, that in raising awareness of the clues that could be noticed prior to a death by suicide, even one life may be saved. I continued to finish all the interviews. In line with the stated process, I wished to share those transcripts with participants who had indicated that they would like a copy. Participants were contacted via email for that purpose, but a reply came back from a relative of one participant, stating that the participant had died some months earlier. I felt an overwhelming sadness that, whatever the circumstances of their death, they were no longer able to hold the hope for their future that they had expressed in their interview. I also felt relieved to know that there had been some months between our interview and their death, so I did not feel a need to bear responsibility for their death. This is perhaps a further emotional risk of sensitive and participatory research. Again, this was experienced as an emotional burden, and I took time to sit with the sadness before continuing. Whilst my research is not yet complete, I am pleased to be at the midpoint of the writing up of my thesis and feel able to forge on to completion. This part of my chapter has addressed recruitment strategies for sensitive research, which are often not straightforward, with dilemmas that are best explored through discussion with a trusted other. During the intensity of the interview stage, robust support was paramount for my welfare, as the work is emotionally laborious. Where support was lacking, appropriate alternative support should have been provided in a timely manner. And ‘real life’ continues, as mine did. Sadness, bereavement, and shocking and unexpected events led me to reconsider my ability to proceed. No researcher is immune to their ‘worlds colliding,’ but preparation and support systems that are set up correctly can help, which is the focus of my final theme.

A FRAMEWORK FOR GOOD PRACTICE IN SENSITIVE RESEARCH It is my hope that my learning is practical and useful so that researchers can prepare and respond well in approaching a sensitive research project. Whilst the unexpected will still threaten the task at times, the robustness of a system of support will be vital at that point. Therefore, I have detailed in an accessible form a generic approach to sensitive research, detailing tasks related to setting up, carrying out, and reflecting on the research. Readers can identify and use the pertinent parts of the framework that are most relevant to their research subject, aims, and method. 1. Lessons in the Preparation for Sensitive Research Choose supervisors/research team carefully • Seek supervisors/a research team who are attuned, experienced in the field, relatable, practically available, and aware of their role. A team of three is preferable to minimise the risk of them all being unavailable at one time.

518  Handbook of sensitive research in the social sciences Address lived experience • We bring ourselves to the research. Active acknowledgement of our experience can ‘bracket’ it and reduce its influence. Write/talk/draw/share as a means of addressing it. Conduct a skills audit • There are tools online for self-auditing research skills and experience prior to starting sensitive research. This will identify gaps, which can be addressed by accessing free or paid training or upskilling through research and self-learning. Use the ethics processes effectively • Ethics applications and upgrade reports (where appropriate) allow for comprehensive reflection on the support available, the risks involved, and mitigation tools to minimise risks to the researcher and the participant. Put in place a professional network and make connections • Meet others doing similar research. Attend conferences and events, participate in talks on your topic, and be part of a research group—it all creates connections. There are support groups specifically for those conducting sensitive research. Others involved in research, even if researching disparate topics, can often understand the journey. Use a reflexive journal • Journalling from early on creates a habit of regular processing. It is a safe space and does not need to be included in the final research output. If feelings are hard to express in words, then sharing a journal extract can help. Consider a system of professional support if it is needed • The unexpected happens. Having a counsellor, mentor, or therapeutic support group identified in the event of a crisis is good practice. Sensitive research often asks this of participants, but rarely do we consider this a need for ourselves. 2. Learn from the Process of Doing Sensitive Research Consider ethical and moral dilemmas through discussion • By sharing dilemmas, they can be re-framed and take on an alternative meaning, separate from our own experience or understanding of the problem. Set up a pre-brief and de-brief • Having the opportunity to share feelings in the lead-up to an interview and to offload emotions afterwards prevents stagnation of feelings. Even the knowledge that another person is aware of the data collection event minimises isolation. Journal throughout data collection • Even if the feelings do not appear significant or overwhelming, processing on paper has value. It is a time when vicarious trauma is most likely to happen. Therefore, regular journalling is most important at this point.

‘Someone would have to die for me to give up’: the experience of researching suicide  519 Seek support during the transcription and analysis stages • Whilst less intense than data collection, these stages can mean revisiting difficult feelings. Hearing participants’ voices and reliving their narratives can be as emotive as hearing them in interviews. Analysing is a long process of reflection, with the aim of representing the participants’ views, which can feel like a heavy task. Support for life outside of research • Maintaining good mental health and well-being of the researcher is as important as the health of the participants. When life outside of research has an impact, it is right to share, ask for help, pause the research, or stop the research. 3. Reflect on the Process Learn from the experience • Through understanding the journey, researchers can identify improvements and note the challenges navigated. This can help with growth and preparation for future sensitive research. Capture the experience • Having reflected on the journey and delineating that in a public space, through a journal article, conference presentation, or in leading others in research, it teaches others about the process of research and helps them feel more prepared. Focus on the value of sensitive research • Whilst the convoluted and complex path through research is tough and often unrewarding, most researchers embark on that journey through an inherent belief in the value of the research. Conducting sensitive research is not within everyone’s ability, so there is an accomplishment merely in being able and willing to do it. 4. Principles and Practices in Conducting a Sensitive Research Study: A New Framework (for Qualitative Research) 1. 2. 3. 4. 5. 6. 7. 8. 9.

Engage early to put strands of support in place. Use an outlet to enable the sharing of lived experiences. Use a skills audit tool to identify gaps. Boost a skill set with training. Ensure continued supervision and support throughout the research. Use ethical processes to assess all risks, including risks to the researcher/research team. Discuss ethical and moral dilemmas encountered. Connect with others in similar sensitive study fields. Find an outlet for expressing and processing complex emotions, art, writing, and spoken word for example. 10. Consider a need for professional counselling support or mentoring. 11. Reflect on the experience of conducting sensitive research. 12. Share reflections to equip others in order for the knowledge base to expand.

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CONCLUSION AND FUTURE DIRECTIONS The burgeoning issue of deaths by suicide in young people created an impetus in me to understand more. Endless quantitative studies on suicide negate the stories behind the struggles, which I sought to explore. Whilst the research task is difficult, I have identified the skills and tools that have enabled me to continue, which I have shared in this chapter. By considering the risks to the researcher in sensitive research, we can start a collective approach to addressing this with ethics committees. My life events are unique, but for others, there will be alternative incidents that occur whilst researching sensitive issues. This chapter has sought to provide ideas for dealing with the seen and unforeseen. Lastly, I have used this learning to create a generic framework as an approach to further sensitive research. It is my hope for researchers undertaking sensitive research that there is promise of growth through the endurance of challenges. I can testify that persevering can create satisfaction, as well as increase our learning and understanding of sensitive issues.

ACKNOWLEDGEMENT I would like to thank my supervisor, Sharon Mallon, for feedback on early drafts of the manuscript.

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‘Someone would have to die for me to give up’: the experience of researching suicide  521 Health and Safety Executive (HSE) (n.d.). Lone Working Policy, accessed 2 October 2024 at https:// www​.hse​.gov​.uk​/ lone​-working/. Health Research Authority (HRA) (2023). Social Care Research Ethics Committee, accessed 2 October 2024 at https://www​.hra​.nhs​.uk ​/about​-us​/committees​-and​-services​/res​-and​-recs​/search​-research​ -ethics​-committees​/social​-care​-research​-ethics​-committee/. Johnson, B. & Clarke, J.M. (2003). Collecting sensitive data: The impact on researchers. Qualitative Health Research, 13(3), 421–434. https://doi​.org​/10​.1177​/1049732302250340. Joiner, T. (2005). Why people die by suicide. Boston, MA: Harvard University Press. Leishman, E., Quilgars, D., Abbott, D., Clark, S., Cooper, B., Pollin, A., Hodgkins, S., & Scarrott, P. (2023). Working collaboratively with an online advisory group of people with learning disabilities in covid-times: carrier pigeons, cats and drones. Research Involvement and Engagement, 9(1), 1–79. https://doi​.org​/10​.1186​/s40900​- 023​- 00494​-7. Mallon, S. & Elliott, I. (2021). What is “sensitive” about sensitive research? The sensitive researchers’ perspective. International Journal of Social Research Methodology, 24(5), 523–535. https://doi​.org​ /10​.1080​/13645579​.2020​.1857966. Minuchin, S. (1974). Families & family therapy. Boston, MA: Harvard University Press Nelson, J. A., Onwuegbuzie, A. J., Wines, L. A., & Frels, R. K. (2013). The therapeutic interview process in qualitative research studies. The Qualitative Report, 18(40), 1–17. https://doi​.org​/10​.46743​ /2160​-3715​/2013​.1458. Newton, V. L. (2017). It’s good to be able to talk: An exploration of the complexities of participant and researcher relationships when conducting sensitive research. Women’s Studies International Forum, 61, 93–99. Patterson, G. R., DeBaryshe, B. D., & Ramsey, E. (1989). A developmental perspective on antisocial behavior. The American Psychologist, 44(2), 329–335. https://doi​.org​/10​.1037​/0003​- 066X​.44​.2​.329. Robinson, D. (2023). BrainyQuote: David Robinson, accessed 2 October 2024 at https://www​ .brainyquote​.com​/quotes​/david​_ robinson​_792379. Royal College of Paediatrics and Child Health (RCPCH) (2023). State of Health, accessed 2 October 2024 at https://stateofchildhealth​.rcpch​.ac​.uk ​/evidence​/mental​-health ​/suicide/#:~​:text​=Since​ %202013​%2C​%20suicide​%20rates​%20have​,some​%20point​%20in​%20their​%20lives. Shaw, S. & Barrett, G. (2006). Research Governance: Regulating Risk and Reducing Harm? Journal of the Royal Society of Medicine, 99(1), 14–19. https://doi​.org​/10​.1177​/014107680609900109. Social Research Association (SRA) (2007). Sensitive research, accessed 2 October 2024 at https://the​ -sra​.org​.uk/. Vitae (2023). Vitae Researcher Development Framework, accessed 2 October 2024 at https://www​.vitae​ .ac​.uk ​/researchers​-professional​-development​/about​-the​-vitae​-researcher​-development​-framework. Walter, T. (1994) The revival of death. Routledge. https://doi​.org​/10​.4324​/9780203220306. Warr, D. J. (2004). Stories in the flesh and voices in the head: Reflections on the context and impact of research with disadvantaged populations. Qualitative Health Research, 14(4), 578–587. https://doi​ .org​/10​.1177​/1049732303260449.

35. End-of-life care and the human researcher: the emotional impact of sensitive research on researchers Zana Bayley

INTRODUCTION Death and dying are emotive themes. Therefore, research around end-of-life care can be perceived as ‘sensitive’ purely due to the subject matter, but it can also be perceived as sensitive due to the potential power imbalances and high risks of harm (Shaw et al., 2019). All areas of research within the field of death and dying are arguably primarily associated with subjective experiences and encounters—dying can be a highly personal and unique experience for the person affected and the people connected both personally and professionally. Therefore, we need to be honest about this in order to maintain our integrity and credibility as researchers (Visser, 2017; also see Chapter 7 in this volume). The sensitivity of topics such as end-of-life care has been widely discussed in research. However, much of the focus has been on participants; for example, the impact on participants engaging in research, and their possible vulnerability (van Wijngaarden et al., 2018; Decamp et al., 2022). Less is written about the impact on researchers doing this kind of work, despite us knowing there is a significant amount of emotional labour involved, particularly in qualitative studies (Liamputtong, 2007; Dickson-Swift et al., 2009; Jones & Murphy, 2021; see Chapters 1 & 4 in this volume). Indeed, our own sensitivities may be caused by the subject matter of our study but can also be our connection to the lives and experiences of the participants themselves and our sense of responsibility and commitment to them (Mallon & Elliott, 2021). There is an added dimension to end-of-life care research in that we may all be considered insiders in areas of death and dying research because of our own personal experiences with death, and that we all have that fate to come (Visser, 2017). There will always be a degree of subjectivity and bias in the research because it is the one commonality we all share as humans. Despite this, the emotional challenges of conducting insider research do not receive much attention (Kinitz, 2022). The impact of being insider researchers is typically reinforced when we, as researchers, may have deeper connections with our topic of study. For example, we may have personal and professional experience or interest in a specific field such as suicide or neonatal death and so pursue careers around this which help us to explore, develop, and use our backgrounds and expertise. However, having such a connection can also be an issue if it causes questions about our objectivity or significantly impacts our emotional responses throughout the study (Mallon & Elliott, 2021). The connection between sensitive research in end-of-life care and the emotional response of the researcher is a key component of this chapter. It starts by broadly considering the emotions and sensitivities of the researcher, before discussing in turn how that intertwines with the 522

End-of-life care and the human researcher  523 practical elements of engaging in research, our vulnerability, and the acknowledgement and influence of our real lives away from our research. It then considers support and solutions to the issues and concerns raised in this chapter, to help researchers not only be aware of them but also to have an awareness of how to realistically manage their own sensitivity and vulnerability, and the myriad of emotional triggers and responses which may present when engaging with research into end-of-life care. It is written in a general sense so as also to be of use to researchers in other areas of sensitive research.

EMOTIONS AND SENSITIVITIES OF RESEARCH Emotional responses can both contribute to and distract from the research process (Woodthorpe, 2009), and as such are important factors to consider when engaging in end-oflife care research. There are risks to researchers in all stages of a study; our emotions pervade the entire research process and need acknowledgement (Butler et al., 2019; Hordge-Freeman, 2018; Jones & Murphy, 2021; Mallon & Elliott, 2021). For example, our emotions can influence how we analyse and interpret our data, creating what has been referred to as ‘emotionally-sensed knowledge’ (Jones & Murphy, 2021). Indeed, even at the start, our emotions often influence the topics we choose to research. I chose to research end-of-life care because I am passionate about equity of care and health service provision (and research tells us that endof-life care is inequitable (Nicholson et al., 2023; French et al., 2021)). I am aware that I feel an emotive response when researching people receiving inappropriate health and social care; my experience as a professional within the palliative care industry was a secondary reason. I argue that all aspects of the research may cause us to become heightened emotionally (Waters & Fien, 2023; see Chapters 1 & 4). Researchers can get distressed (Lalani & Ali, 2020) not only if they have a connection to the topic (Pinto et al., 2022) but also even without having personal experience of the study subject or what is shared in the data collection (Mallon & Elliott, 2021; Kinitz, 2022). Researchers, therefore, need to be mindful of this in end-of-life care research. Even if we as researchers have no direct connection or experience in this field of care, it is important to acknowledge that throughout end-of-life care research, we can potentially be emotive and sensitive to our work. Confronting our own feelings during these various stages of the research process can lead to an intense emotional burden, including feeling exhausted, physically weak or ill, or experiencing inadequacy in our role and poor selfesteem (Pinto et al., 2022; Waters & Fien, 2023). Indeed, it can be difficult to suppress emotions when undertaking research in end-of-life care (Jones & Murphy, 2021)—as they can be wide-ranging, including guilt, anger, fear, selfishness, and hopelessness. These emotions need to be understood and managed carefully (Mallon & Elliott, 2021; Thompson, 2019). I have some suggestions for this later in the chapter, but my sense is that it is important to remember that we should not only express these emotions, but also recognise their influence on us and our research. While there may be a fear of expressing an emotional response because of the implications it could have on our professional position or integrity (Mallon & Elliott, 2021) and expressing emotions may leave us vulnerable to partiality and bias (Woodthorpe, 2009), it is a human response to be emotional, particularly around death and dying. Expressing our emotions during our research, for example, when we are collecting data, may help to redress the power imbalance between researcher and participant (Lalani & Ali, 2020). We can get emotionally embedded in our participants’ lives, emotionally invest in their experiences, and

524  Handbook of sensitive research in the social sciences build real connections with them. We are, therefore, ‘instruments’ of the impact of the data we are collecting. How we feel about our respondents, as well as how we make them feel, is crucial data that can, and arguably should, be included in our research planning, implementation, and reflection (Hordge-Freeman, 2018). Thinking of these emotive responses and how we manage them practically within our research work is the next focus of this chapter.

PRACTICAL ISSUES—PREPARING FOR RESEARCH, THE ENVIRONMENT AND THE REALITY OF DEATH Any aspect of research that examines our mortality in the form of our care needs at the endof-life can be challenging for us. In this section, the following issues are considered: preparing for the research process, the research environment, and confronting death. These can be key points which can impact the practicalities of researching end-of-life care. There are many emotive considerations prior to commencing our research into end-of-life care, particularly when focusing on those receiving care. There can be anxiety before data collection because of the uncertainty around what may be disclosed and whether it will evoke emotional reactions in ourselves or our participants. When recruiting, we may find it emotionally difficult when faced with a participant who wishes to participate, but we have concerns about their physical or mental wellbeing, either in being able to consent to participate or to manage the data collection format (attending interviews or focus groups, etc.). For example, although one participant I visited was keen to give her perspective and be interviewed, I found it challenging as she was clearly in pain and struggled to speak at times due to her medical condition causing breathlessness. This was difficult to manage emotionally, even with offering her the option to take breaks or end the interview early. Participants may also have consented previously on an earlier visit, but when we arrive, it may appear unethical for us as researchers to continue due to a person’s mental or physical condition (Komaromy, 2020), creating an emotionally sensitive conversation between the participant and the researcher. It is also worth considering, before starting any end-of-life care study, how our emotional responses may bias analysis and data choice. Jones and Murphy (2021) explain this well when they consider the example of anger—if certain sections of data cause us as researchers to feel anger, we may be more inclined to include that data to create similar emotional responses in our readers. This is not necessarily a negative bias; however, we need to recognise and acknowledge that our research material may impact the decisions we make throughout the research process, as we would similarly consider other biases such as our personal experiences, beliefs, and worldviews (Karagiozis, 2018). The environment of research activity can be sensitive for the researcher in end-of-life studies. Typically, it is expected that qualitative work may be focused on hospitals, hospices, or people’s homes—the main places of end-of-life care. These environments may create stronger emotive responses in us, especially if they are unfamiliar or evoke personal memories of experiences with family members, or if we see or hear other patients or relatives in distress. I recall how, for one project I attended a hospice day service and found it emotionally challenging to see people who were frail and in discomfort, some of whom were of a similar age to myself. It may also be harder to arrange a neutral venue for participants, and data collection may involve attending someone’s private home. During my data collection at one private home, I

End-of-life care and the human researcher  525 found it difficult to sit comfortably due to the messiness and poor condition of the furniture, and so had to control my impulsive reaction to want to clean and tidy! We may be sensitive to the incapacity of a participant creating an unsanitary or overly clinical environment that is not ‘homely’ or comfortable for data collection in relation to our own comfort. This could also impact our ability to develop a rapport with participants. If the participant is no longer able to keep their home as they would like, this can cause embarrassment for them. This challenges us as researchers, as we need to reassure the participant, although we may find it unsettling or uncomfortable. Medical equipment and aids can create clutter, interfere with audio recordings, or just heighten our awareness of the fragility of our participants, which can be upsetting and difficult to ignore when it surrounds a person or dominates a room. Another challenge of researching people who are considered at end-of-life is that their social circle may include family and friends who may not be accepting of their prognosis or are finding acceptance traumatic. Entering the caring environment where those people may also be present can impact us as we try to negotiate our own workload and purpose for being in that space. Yet we also need to be mindful of the distress and upset that may be expressed or felt by others who may be present. Whether in the family home, hospice, hospital, or other location, it is likely that other people may well be present at some point during our time with the participant, and this can be challenging for us to manage sensitively. It can be disruptive to our project, for example, if a relative enters and interrupts while we are conducting a confidential interview, especially if they want to join in or distract the participant. How do we manage such situations with a relative who may be highly emotive or distressed? Fortunately, I have never had to deal with such a scenario. But, in my work environment, I have had to manage families at a time when it was very sensitive and upsetting, while being mindful of the patients’ needs, which were my primary focus. Similarly, within a hospital or hospice environment, nurses or other clinicians can interrupt our time with participants for assessments, medication dispensing, or other duties. One interview I conducted was interrupted twice by different members of staff entering the patient’s room, needing to talk to her about medications and her lunch preferences, creating a fracture in the flow of the conversation and the participant’s thought processes. We do not want to impact negatively on our participants’ healthcare, but equally, we also need to be aware of our research protocols regarding confidentiality. These challenges can be exacerbated by us often working alone as researchers (Pinto et al., 2022), where we are placed into an environment that is highly charged and sensitive, with no one to share the burden at that time, and with potentially little or no preparation as to what to expect when we enter this landscape of our participants. The physicality of our participants is also arguably a practical issue. The deterioration and possible death of a participant during a study is a real possibility in this area of research. We need to acknowledge this potential situation and consider how it may impact us. Even when we know a participant is seriously ill and considered to be approaching end-of-life, it can still be a shock when it happens, and it has been argued that nothing can prepare us completely (Waters & Fien, 2023; Six, 2020). While of course, it may have implications for the research itself in the context of data collection, it can also be impactful on the researcher. In one study, I spoke to a potential participant several times on the telephone, and she was keen to get involved, having been a research nurse herself. We arranged to meet for an interview several times, but each time she felt too ill on that particular day. She did not answer my last call, and when I queried this with the practitioner who had suggested her as a potential candidate, I was informed she had been taken into the hospital and had since died. I felt numb, even though I had not met her.

526  Handbook of sensitive research in the social sciences I had enjoyed our chats and her enthusiasm for wanting to participate in my end-of-life care research. I also felt angry that her voice would not be included, as she had expressed amazing insight and thought during our informal discussions, and I was looking forward to having this included in my study. It made me reflect on the delicate balance we have in trying to research this area, where our potential participants are so fragile that even waiting a week to include them in any form of data collection can be too long. I had many people agreeing to participate in my study, but a very high number of dropouts due to ill health, causing anxiety around ever reaching my target population. Therefore, it is crucial to not only be aware of this possibility but also to consider and develop strategies in advance of the project to try and mitigate the potential risks to us as researchers. Participants may appear well and physically able to engage with us, but the reality of many conditions is that the trajectory can be unpredictable, and deterioration and death should not be a surprise at some point either during our research or soon after. In one interview, a participant showed signs of tearfulness, and she stopped speaking. I had to offer reassurance, inform her it was okay, show empathy and give her time. She was able to continue after a short break, but I was keenly aware of how my questioning and interaction with her could cause discomfort. Acknowledging these anxieties and emotive situations, and reflecting on what we can control and what we cannot, is crucial. In contrast to our research and research environment, we also need to consider our own environment, experiences, and lives outside of our research, and how that may impact our emotions and sensitivities in endof-life care research.

LIFE, RESEARCH AND TRIGGERS We are often discouraged as researchers from drawing on personal experiences and ignoring our emotional connections (Hordge-Freeman, 2018), but we cannot fully separate our personal lives from our research (Kumar & Cavallaro, 2018). It can be particularly emotive and burdensome if there is a shared experience, marginalisation, or culture between the researcher and their participants (Kinitz, 2022). We are human, after all, and therefore, our human sensitivities will impact us, especially when engaged in highly emotive areas of research such as death and dying. Therefore, trying to remain neutral and separate our personal lives from our research experiences can be a challenge. Not allowing the influence of our life experiences and emotions to be acknowledged may lead to signs of depression and anxiety (Waters & Fien, 2023), as well as possible guilt or inadequacy in our ability to be researchers, if we find it too difficult to maintain neutrality. Being neutral in research is sometimes necessary to maximise validity, and within sensitive research, there is often an onus on researchers to demonstrate how they will reduce any vulnerability when deciding on methodologies and obtaining ethical consent (Borgstrom & Ellis, 2021). Different research methodologies can create a difference in how researchers may approach this issue. For example, in ethnographic research, there is a greater recognition and connection between the research and the researcher. However, when conducting quantitative studies, there is considerably less scope or expectation for our personal lives to interject into or affect the study. This has led to a paucity of literature on the emotional experiences of conducting quantitative studies (Bluvstein et al., 2021) despite it being a real consideration for researchers. For example, if readers are looking at statistics of premature deaths due to road accidents, it

End-of-life care and the human researcher  527 can still be deeply moving when they are aware there are families’ lives broken behind those numbers, or they may have their own personal experience of the subject. All data relating to death and dying will have some connection to us as humans and in our research (Reed & Towers, 2023). Acknowledging and making allowances for our views and values comes from reflecting on our positionality within the research. Death and dying are emotive topics on which we, as humans, often have differing perspectives, experiences and beliefs, which can change over time (Holmes, 2020). As mentioned in the introduction, we are not separate from the social processes we research (Holmes, 2020). We will experience dying at some point, and as we age, we are more likely to experience the deaths of family members and people we know. As researchers, we are not required to put our lives on hold while we engage in research; we bring our own backgrounds and experiences into this work environment (Visser, 2017) including traumatic events that can trigger responses in us. Triggers can arise from the realisation that our research could show a possible future for ourselves (Bluvstein et al., 2021) or members of our family or friends. The inevitability of death for all of us becomes more realistic when we are either faced directly with people who are dying or handling data that informs us about death experiences. That inevitability can create a trigger and oblige us to deal with any revealed traumas (Johnston, 2019) which can come from our own past or current personal and professional situations. We may have experienced death previously; for example, of a friend, colleague, or family member, and this can cause emotional distress even before we embark on end-of-life care research, as we recollect those experiences and how they may relate to our study, the participants and our findings (Six, 2020). Managing such triggers that force us to confront our own situations, personal relationships, and past experiences can be complex and challenging (Visser, 2017). We can also be triggered by our participants disclosing experiences we find challenging, such as poor treatment or inequity of care. This can be especially true if we are connected either professionally or personally to the organisations or individual professionals being discussed, and can potentially evoke feelings (Jones & Murphy, 2021). When I was researching hospice care, I found myself feeling very emotionally heightened because I was keenly aware of my own family’s experiences with a hospice care provider who had cared for my grandmother. I had to ensure that this did not impact my views of the hospice, the participants, and my data in my study. Witnessing distressing accounts and sights while engaged in research can cause us harm (see Chapter 1) including triggering secondary distress, compassion fatigue, or secondary traumatisation (Bluvstein et al., 2021; Canfield, 2005). Even just hearing the voices of our participants when analysing data, particularly if they have since died, can be emotive and challenging for a researcher. One research project I worked on involved patients who died soon after data collection, and I was ever mindful when analysing the data that I was hearing and reading the voices of people no longer with us. It can change our perspective and how we manage that data, but also impact our real lives in that those spoken words stay with us. I found I had to take regular breaks from the data, sometimes for considerable periods of time, because it was traumatic to repeatedly read some aspects of the conversations. I still think of one particular participant whose story affected me deeply due to her young age and the lack of support and care she received in the months before her death. The risk of psychological harm can continue even after the research is completed (Bluvstein et al., 2021), causing emotive responses, either when actively reflecting on the experience, or

528  Handbook of sensitive research in the social sciences unconsciously when random incidences in our lives cause us to remember some aspect of our research (Dean 2017). Even with the implementation of various strategies and resources to help us manage our engagement in end-of-life care research, there can still be random and unexpected triggers, for example, when discussing our work with others or visiting a place where data collection took place. These can potentially cause significant levels of emotive responses, even symptoms of post-traumatic stress disorder (Jones & Murphy, 2021). It can be difficult, if not impossible, to fully separate ourselves as researchers not only from the memories of our participants but also from our data. Arguably, instead, we should acknowledge it and recognise its impact not only on our research but on us as individuals. We want to appear as confident, competent researchers; feeling and expressing emotions does not reduce that. Equally, our vulnerability as researchers does not mean we are less capable in our roles. This is our final consideration in this chapter before it moves on to considering solutions to support and manage that emotional impact on us as researchers.

VULNERABILITIES OF RESEARCHERS When participants express trauma and recall distressing, deeply personal recollections of their symptoms, treatment, and prognosis, it may lead to the development of a strong emotional connection with us as researchers (Hordge-Freeman, 2018; see also Chapters 1 & 4). This can create a form of moral stress, whereby we are divided between our obligations to the study— to maintain professionalism and follow ethical protocols—and our human side in wanting to support participants who appear uncomfortable, troubled, or distressed (Bluvstein, 2021). Within end-of-life care research, this can manifest in participants verbalising difficult experiences that we are unable to resolve or ‘fix’. We then experience moral anxiety around allowing participants to speak openly about, and reflect on, such difficulties without offering any positive solution or outcome. This means there is also a likelihood of us being vulnerable as researchers. We need to be able to recognise and manage any vulnerability we may have alongside our participants. We can learn much about ourselves when researching death, and this may cause us to feel vulnerable as we develop and grow as people during our research process (Woodthorpe, 2009). Initially, we may perceive that our limited experience in end-of-life care, or research in general, means we feel unskilled in managing our own emotions and protecting ourselves from psychological harm (Waters & Fien, 2023; Six, 2020), and so need to consciously work towards improving our research resilience and competency. This is important as vulnerability can sometimes be perceived by researchers as negative and requiring attention to be mitigated. We may feel vulnerability in our role, for example, that we may unintentionally cause harm to our participants due to the sensitive and emotive subject matter, and participants’ vulnerability due to their medical condition or emotional state (Borgstrom & Ellis, 2021). It can be argued that in order to fully engage with our participants and their stories, we need to interact on a personal level (Karagiozis, 2018). This can cause us to feel vulnerable, not only in exposing that side of ourselves to achieve that connection with our participants, but also uncomfortable around blurring those boundaries between researcher and participant—possibly exposing us to potential criticism about our ethical approach (Woodthorpe, 2009; Visser, 2017) or questions about our objectivity (Mallon & Elliott, 2021).

End-of-life care and the human researcher  529 Finally, there may be times when our professional role is conflicted between participants. For example, in end-of-life care, we may interview a patient who describes a perceived poor level of care and then interview professionals from that care team who were being negatively described. This could be heightened if we work or have previously worked with or for the critiqued service. Participants may describe a symptom of their life-limiting conditions, which we know, as health professionals, can be relieved or reduced in some way. However, we must assess whether it is right for us to disclose this at that time, or after data collection, or at all. During one of my studies, I recall one patient who wanted to try reiki and aromatherapy to help her cope with her aggressive cancer symptoms and treatment but could not find a local practitioner who would agree due to the deterioration of her physical health. I knew the local hospice could support this, and so I found it emotive to hear her recall her desperation, feeling ostracised from her local community because she could not access services like other members of the public, and expressing despondency because of this during our interview. Once the recording ceased, I felt compelled to inform her about the hospice’s services and advised her to contact them. She was then able to get the therapeutic support she wanted. It alleviated some of my feelings of frustration and unfairness; however, I still feel some anger towards the local health services that did not provide this information to her earlier in her trajectory, and that it was only a fortuitous encounter with myself during that research project which helped her to then access those alternative therapies. I have discussed many areas of emotional sensitivity we can experience as end-of-life care researchers, many of which may resonate in other areas of sensitive research. While it sounds extremely challenging, highly emotive, and potentially distressing, causing long-term effects beyond the actual project itself, researchers can plan and use various techniques and strategies to help minimise and manage the impact of our research on ourselves, our work, and our lives beyond research. The next section considers this.

END-OF-LIFE RESEARCH: RECOMMENDATIONS So far in this chapter, I have considered the many facets of the sensitive nature and impact of end-of-life research. Clearly, it is a highly emotive and challenging environment to work within; however, there are strategies we can deploy to help mitigate and manage this. In this final section, I present strategies to provide some guidance and support for any researchers working in this difficult yet rewarding field. Of course, many of these strategies may well be appropriate for other areas of sensitive research but are presented here as ideas particularly for helping researchers in studies around end-of-life care and death and dying more generally. This guidance demonstrates a comprehensive approach in that some preparation can be done prior to commencing any study (Six, 2020), other strategies can be implemented during the research process, and there are processes we can engage in after our research. ‘Before’ Strategies There are several strategies we can employ prior to undertaking research, particularly in the planning stages.

530  Handbook of sensitive research in the social sciences Create a self-care plan Creating a plan for self-care during the research process should be an essential part of any sensitive research project (Kumar & Cavallaro, 2018). Working in end-of-life research, we know that our engagement with participants and data is likely to be sensitive and emotionally charged. Preparing and planning for this by creating space and opportunities to practice selfcare will aid any researcher in managing the sensitive nature and emotional impact of their project. Gain experience For some researchers, working within end-of-life research may be a new topic and one that is not familiar. In order to help prepare ourselves for working with people at end-of-life in sensitive settings such as hospices and hospitals, it may be useful to gain experience in death and dying environments. Connecting with patients who are at end-of-life by visiting a palliative care ward or hospice setting can help to reduce any anticipatory stress (Six, 2020) and provide an insight into their reality before you commence any significant research work. There are many myths and assumptions made about death and dying, so it may prove beneficial to enter end-of-life care environments to dispel any preconceptions and concerns readers may have as a new researcher in this field. Establish collaborative working environments Research is never done in isolation. Even if readers are the sole researchers engaged in a project, such as a PhD study, there will also be supervisors, managers, administrators, and various other personnel and departments involved in the research. There is a division between what we can and should expect from organisations and institutions responsible for research, and what we can do for ourselves. Both need to work together collaboratively to achieve a good balance of training and support (Kumar & Cavallaro, 2018). Establishing those collaborative and supportive relationships before commencing a study will help us immensely in managing our emotive responses throughout our project. Access training Accessing training and development programmes within readers’ workplaces is crucial not only to aid us in developing as researchers but also to help us recognise and manage our own vulnerability and emotional resilience. Training is not, and should not be, only about practical research skills but also be available for more psychological and emotional needs such as selfcare, emotional labour, managing traumatic experiences, and recognising burnout (Kinitz, 2022; Waters & Fien, 2023; Kumar & Cavallaro, 2018). Engage in wider research culture That wider circle of professionals we interact with while engaging in a research study means that we are part of a larger research culture. We need to be aware of that culture when we are planning a study, so we can embed ourselves in it, and ensure that our past experiences, both personal and professional, as well as the potential harm of engaging in end-of-life care research, can be acknowledged and supported positively.

End-of-life care and the human researcher  531 ‘During’ Strategies Reflective practice Reflective practice is a technique that has been adopted into research as an effective way to manage our responses to our research; it allows us to understand and address the impacts of research on ourselves (Kinitz, 2022). Being reflective can produce unpredictable results (Kress & Frazier Booth, 2018) such as recalling the difficult decisions we have to make in situ, for example, whether to touch someone’s hand (Borgstrom & Ellis, 2021), but it can also help strengthen our own resilience (Waters & Fien, 2023). We need to be aware, therefore, not only of the benefits of being reflective but also of the challenge to us in opening up and reliving those sensitive moments during our research. Memo-writing and field notes Memo-writing and adapting field notes can aid us in reflecting, and this can help us improve our self-resilience (Waters, 2023). We can reflect on potential problems, considering why they may be an issue and thinking about how to resolve them (Six, 2020). It should be undertaken throughout the research process, including the design stage, before we embark on data collection, during data collection as a form of reflection-in-action (Price & Deveci, 2022), and during and after analysis and dissemination. Mindfulness practice One way to try and disconnect from our research, as advocated by others, is to venture beyond reflexivity to consider mindfulness practice. This enables us to ‘tune in’ to our heightened emotional and spiritual needs due to working within end-of-life care (Ho, 2019). Mindfulness practice allows us to focus on the present, rather than the past or future consequences. Indeed, mindfulness ‘allows for the rising, the noting, and the letting-go of thoughts, emotions, and judgments’ (Rau, 2020, p.106) and so can be seen as a worthwhile practice to help us as researchers manage our stress and anxieties around working within end-of-life research. Ensuring time is allocated to undertake mindfulness and reflection is therefore important. Allowance of Time Taking leave Planning our time and workload carefully can help us manage sensitive research. This can include taking leave from a study to go on holiday, allowing us to remove ourselves completely emotionally from the project. However, shorter respite periods throughout the study can also enable us to reflect on the project, our emotional responses, and how we manage those heightened emotions. Spacing research activities Taking short breaks can be helpful, and requirecareful planning of research activities. This could include, for example, spacing interviews so they are not too close together, to help reduce the intensity of reactions between sessions, and allow space to reflect. Setting a limit on daily or weekly activity may help ground a researcher and manage the sensitivities of their research, including data analysis, where we are so immersed in our data that it is important to build into our practice dedicated time away from the data to process and manage any

532  Handbook of sensitive research in the social sciences emotional responses. Taking time out, therefore, can be useful in many stages of our projects, and an effective use of that time may be to connect with a support network. Support Network Maintain collaborative connections Research into end-of-life can be conducted through many settings including universities, research institutes, hospitals, hospices, and other organisations. It means that, as researchers we may be working as part of a large team or on our own solo project. It is crucial, though, that whatever our work environment, we should try to maintain those connections with others we established earlier to help share the burdens of this sensitive research. As part of a team, we can share the burdens of data collection, analysis, and dissemination, as well as provide formal and informal peer support. Our support networks can help us to recognise vulnerabilities in ourselves and our colleagues, the secondary trauma that may manifest in our work, and the emotional labour we are enduring when working within end-of-life care research. Mentoring Having a mentor or someone similar who is more experienced and knowledgeable about the impact of sensitive research on the researcher can help identify these key vulnerabilities that need support, and help with strategies to manage and share those burdens. Debriefing Whether it’s a mentor, colleague, supervisor, or line manager, it is also worth considering having a regular system in place for debriefing. This allows time to talk through any challenges or difficulties, from the study or our own personal lives, which may be causing conflict and heightened sensitivity with the research. This can be in addition to more formal supervisions. Counselling Talking through issues with peers can help immensely with the challenges of sensitive research, but having access to professional counselling services should be included for all researchers engaging in end-of-life research, in case their psychological and emotional needs become significant beyond that which can be supported by mentors, colleagues, or supervisors. Emotional, Psychological and Physical Wellbeing Positive focus Counselling of course is an excellent strategy to help maintain our psychological and emotional wellbeing; however, there are other tools we can use. First, focusing on the positive aspects of our research can be helpful when we feel connected to our participants and aware of their mortality. Even though they may not see the results of our work, participating in the study can be productive and useful to them in that we are offering them a chance for their voice and experience to be heard in the outcomes of our study. Also, participants who take time with us as researchers to share their insights and experiences can often view this as therapeutic (Garrels, 2022), and actually enjoy the companionship and interaction with us as researchers. Taking some comfort in the positive encounters experienced by the people

End-of-life care and the human researcher  533 involved in our study can help us reconcile our emotional responses to their past, current, and future circumstances. Physical wellbeing Our physical wellbeing is important too and should not be neglected, as it can be a crucial tool in helping us manage emotionally and psychologically. Research focusing on death and dying for extended periods of time can be physically tiring and draining; therefore, considering forms of exercise and movement, potentially even as part of our mindfulness and reflection, or ‘time outs’ mentioned earlier, can be beneficial. For example, the hospice where I was working had lovely, pleaceful, landscaped garden areas, which were beneficial for a walk to pause and reflect. ‘After’ Strategies Even when we complete our research, there are approaches we can use to help us manage the sensitivities of engaging in end-of-life study. It may be that it is only when we get to the end of a project that we realise the scale of the impact on us physically, psychologically, and emotionally. Time to distance and rest Taking time to distance and rest from the study allows us to continue our practice of reflection and process all our emotional reactions. Planning a holiday at the end of our research, or even just a period of rest at home, can also enable us to physically recover and recharge. Reflection on growth The end of a project can afford us opportunities to consider how our research experiences focusing on death and dying have enabled us to grow, not just in our research abilities, but also in ourselves as humans—our abilities to manage our emotions, work alongside vulnerable people at the end of their lives, deal with uncertainty, fragility, and traumatic experiences, gain greater recognition of our own triggers and support needs, and develop strategies to manage those triggers, and other maturities which may be unique to each researcher. These all can help us to process our involvement in the study, how we progressed through our work, and who we are now that we have completed and moved on from that study. As I have demonstrated here, there are many strategies that can be deployed by researchers to manage the impact of undertaking sensitive research in end-of-life care at all stages of a project. They may not all be appropriate or necessary, but hopefully, they can aid readers in their current or future research plans. To engage in this field can be emotive and challenging, and I wanted to offer in this chapter some positivity and practical solutions.

CONCLUSION AND FUTURE DIRECTIONS In this chapter, I have delved into the emotional and sensitive world of end-of-life care research, focusing on what it means to be a researcher engaged in studies that centre around death and dying. I realise that while it is important to consider the sensitive nature of these topics and the possible vulnerability of participants, we cannot neglect the researchers involved.

534  Handbook of sensitive research in the social sciences While there has been a growing body of work focusing on sensitive research in recent decades (Liamputtong, 2007; Dickson-Swift et al., 2009; Karagiozis, 2018; Dickson-Swift, 2022; see also Chapter 1 in this volume), focusing on specific key areas such as research on end-of-life care is less common. I have considered the emotional nature of end-of-life care and how we need to recognise and accept our emotions so we can manage their impact not only on our research but on ourselves and our lives, even after the research has concluded. I explored how our research can affect our lives, but also how our lives can affect our research; the challenges of confronting death and becoming emotionally connected to our participants. I discussed the vulnerability of our participants and how that can create anxieties and tension during our research, but also how we as researchers may feel vulnerable, possibly due to feeling inadequate, or challenged by the trauma expressed in our data, or the blurring of professional boundaries. Many of the issues I have discussed, and indeed many of the strategies I suggest, are focused on our emotions. There is a high risk of emotional burnout in researchers of sensitive topics (Butler et al., 2019), so we need to build the management of our emotions into every research stage, focusing more on emotion-focused coping strategies rather than those that are problemfocused (Ho, 2019). We need to prepare ourselves before we begin any sensitive research and allow time throughout our project for reflection and breaks from our research. We need to ensure our support network is in place and there to help and guide us in all areas including our emotional and psychological wellbeing. This is crucial in end-of-life care, as the very nature of the topic is likely to create strong emotional responses which may be challenging for us to face on our own. In recent years, we have seen increasing procedures and regulations to help protect and safeguard research participants; for example, research ethics committees and local research governance groups. However, assessing the preparation and support required for researchers is still not an integral part of those procedures (Mallon & Elliott, 2021). We need to consider how we can highlight this need more within the research communities. As I have demonstrated in this chapter, our emotional sensitivities are relevant, important, and a key part not only of who we are but of our research. As researchers, we can take steps to ensure we plan emotional wellbeing into our research proposals and grant applications. As institutions, it may mean ensuring this is an essential part of any research degree course or PhD programme. In workplaces, it may require initiating strategies such as mentoring, study breaks, or training in reflective practice to better equip staff who are engaging in research activities within end-of-life care. Overall, it may mean a culture shift to ensure researchers are not overlooked when managing the sensitivities and vulnerabilities of end-of-life care research. It is incredibly rewarding to engage in research in end-of-life care; this chapter hopes to help support other researchers in this field, raise awareness of some of the issues and challenges, offer some practical solutions, and ponder how we can emotionally support and strengthen our research cultures and communities in the future.

ACKNOWLEDGEMENT Special acknowledgement to Dr Sharon Mallon for her support in editing this chapter.

End-of-life care and the human researcher  535

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Index

Aboriginal population 491 abortion 305–306 academic community 248 academic identity 347 academic scholarship 176 accessibility 216 accessing training 530 accountability 333 Acker, J. 436 action-based social problem-solving 111 action research 223 active listening 181, 262 actors 215 cooperating 215 Adams, E.A. 154 Ademolu, E. 291 Administrative data linkage 394 administrative data linkage 394 adolescents 384–390, 397 data collection procedures 391–392 experiencing marginalisation and vulnerability 388 identifying and recruiting participants 389 informed consent, obtaining 390–391 in research 395–396 research ethics committees, navigating 388 Adrian, S.W. 307 adult sexual perpetration 354 advocacy 396, 436 affect 181 affective practice 39 ageing 116, 121, 481 Agllias, K. 365 alcohol 403 consumption 403, 408, 411–412 drinking and drunkenness 403, 414 alcohol consumption 267 alcohol consumption during pregnancy 267, 270, 272 analyses of data sets 270 online data corpus 268 research team 268 study design 268 telephone interviews 269 Alderson, P. 223–224, 406 Aldridge, J. 319 Allett, N.F. 174 allyship 50

altruism 452 Anderson, E. 106, 449 Angelides, S. 463 Anthony, T. 491 anti-LGBTQ+ attitudes 441 anti-LGBTQ+ hate crime 428, 430–431 anti-objectivity 178 anxiety 526 artificial intelligence 124 art of listening 177 arts-based methods 7 arts-based research 134–135, 136 Arumugam, I. 307 Ashby, C.E. 116 Askins, K. 143 Asquith, N.L. 367, 437, 440 assisted reproductive technologies (ART) 317, 319, 322, 325, 328 Athanasopoulos, A. 141 Atiyat, R. 28 attribution career 85 attrition 109 Austin, J.L. 224 Australia 68, 70–71, 287, 293, 393, 435–436, 439–442, 468, 495–496, 501 corrective services 492–493 reality of filicide 466 Australian Human Rights Commission 441 authenticity 257, 261, 292 auto/biography 356, 358 autoethnographic writing 509 autoethnographies 79 autoethnography 311 autopsy 311 autotheory 311 Awan, I. 423 Bachelard, G. 97 Back, L. 175 Bacon, F. 97 Bailey, M. 421 Balota, B. 8 Band-Winterstein, T. 9 Banks, M. 160 Barker, J. 404 Barker, M. 7 Barnett, B. 461 Barron, J. 116

537

538  Handbook of sensitive research in the social sciences Bartholomew, M. 487 Barylske, J. 119 Bauman, Z. 225 Bay-Cheng, L.Y. 243 Beauregard, C. 141 Beauvoir, S. 480 Becker, H.S. 104 Beckman, S.C. 25 behaviours 71 Bell, J. 241 Bengry-Howell, A. 404 Benoit, C. 4, 159 bereaved fathers 451 bereavement 77–83, 86, 88–89, 177, 221, 226, 231, 301, 304, 451–452, 512 bereavement leave 512 Berger, J. 137 Betawi, A. 141 Bhat, M. 440 bias 64–65 binary continuum 73 Blatt, B. 115 Bochner, A. 7 Boden, Z.V.R. 511 Borgstrom, E. 89, 93, 301 Bosley, G. 85 Brandl, B. 481 Brewis, J. 345 Brim, M. 66, 68 British Psychological Society Code of Ethics and Conduct 38 Broadbent, E. 160 Bronfenbrenner, U. 94 Brown, T. 465 Buber, M. 257 Buckle, J.L. 290, 309 Buist, C.L. 440 burdens 266, 270–272, 274, 278 Burgess, B. 7 Burris, M.A. 8 Butler, A.E. 84, 87 Butler, J. 460 Butler-Rees, A. 43 Cain, R. 303 CALD LGBTQ+ 441 Campbell, Colin 453 Campbell, R. 6 Canguilhem, G. 97 care 118, 123–125, 257, 300, 447 care-avoidance tendencies 124 care homes 125 Carroll, K. 44, 46, 487 Cartesian epistemology 97 categories of difference 120

Cerel, J. 222 chat-based services 184 child- and age-appropriate forms 214 child-centred methods 218–219 child-centred research 217 child-centred sensitive research 213 child disability 245 child homicide 457 childhood domestic abuse 179 childhood sexual abuse 181 child protection charities 426 children 227 mourners 227–228 children’s rights 210–212, 213, 216–217 children’s rights-based approach 210 child-sensitive method 204 child sexual abuse 185, 187 Chinn, D. 8 Chodorow, N. 448 Christensen, P. 224–225 Christie, N. 462 chronic diseases 495 chronic illness 199–200, 202, 204, 206 chronic pain 200–201 see also chronic illnessdefined 200 Chrysostomou, D. 141 Chubb, J.A. 42 Chung, K.C. 176 cis-gendered heterosexual norms 71 cissexism 443 Clarke, A.E. 117 Clark-Kazak, C. 236, 244, 249 Cochran, J.C. 499 co-constitutiveness 117 co-creation 122, 125, 201 co-curated research 178 co-design 125–126 codes of ethics 38 co-interpretation 201 ‘cold’ field access 82 co-listening 181 collaborative connections 532 collaborative working environments 530 communication 174, 189–190, 204, 509–510 child-friendly forms 216 communication tools 206 community-based decolonial/indigenous research 102 community-based non-government agencies 287 community-based participatory research (CBPR) 285–287 community connections 285–286 compassion stress 26 compensation methods 377 competence 293

Index  539 compliance 260 confidentiality 242, 245, 247, 248, 292–293, 327, 413, 513, 525 Connell, R.W. 447 consciousness 174 consent 259–260, 293, 498 consumers 284 contact zones 143 context of migration 236–238, 240, 243, 247, 249 continuous professional development (CPD) 261 conversations 190, 310 Cook, A.S. 85 cooperation 215 Copnell, B. 84 corrective services 493 Cottle, T. J. 509 counselling services 532 Cowburn, M. 498 Craven, C. 303 creative method 6–8, 403 Crenshaw, K. 120, 436–437 Crime Survey for England and Wales (CSEW) 479, 482–483 critical feminist methodologies 39 critical-rationalism 97 critical reflexivity 322, 326, 340 cross-cultural complexities 28 cross-cultural research 33 Crown Prosecution Service (CPS) 419 Crown Prosecution Service [CPS] 359 CSEW technical report 483 Cullen, F.T. 103 cultural context 70 cultural influence 70 Culturally and Linguistically Diverse communities (CALD) 435, 439 identity 437–438 dangers in fieldwork 10 data analysis 329 data collection 304, 309, 319, 329, 359, 360, 391–392, 499, 511, 516, 518, 524, 527 procedures 391 data collection method 193 data collection methods 184 data collection technology 106, 110 Dávila, L.F. 10 Dawson, J. 185 day-to-day interactions 203 dead bodies 86 Dean, J.A. 286–287, 290 death 77–83, 86–89, 301, 509, 520 death and dying 522–524, 526–527, 530, 533 Death Penalty Abolition Act 1973 493 death studies 77–79, 88

beginnings and status quo of 78–79 death taboo 512 de-brief 518 debriefing 532 decolonisation 102 defensive masculinity 449 definitional chaos 480 degree of formalisation 82 dehumanisation 428 demographic groups 3 de Noronha, L. 174 Denov, M. 141 de Oliveira, J. M. 466 depression 526 Deps, P.D. 244, 249 desensitisation 346 Desmarais, S.L. 481 developmental-longitudinal research 109 developmental psychology 230 De Viggiani, N. 499 dialogical drawing 141 DiAngelo, R.J. 435, 441 diaries 410 Díaz-Fernández, A.M. 6, 13 Dickinson-Swift, V. 329 digital communication 217 digital interviews 245 digitalisation 124–125 digital platforms 99 Digital Services Act (DSA) 218 digital technologies 125 disability activism 285 Disclosure and Barring Service (DBS) 415 discourses 459, 464–465, 468, 471 discrimination 124, 133, 285, 389, 427, 440 dissemination 248–249 doctoral studies 57 doctoral supervision 61 ‘doing gender’ theory 266 domestic abuse 484, 488 domestic violence 293, 457, 468, 470, 479, 481, 491 Donnelly, M.K. 411 double ethics 498 doubly vulnerable persons 3 Doucet, A. 485 Downes, J. 31 Doyle, C. 10 drawing 132–133, 137, 143, 201, 205, 412 as arts-based research method 136 as means of researching 138–141 children and adolescents, sensitive topics 141–142 defining 137–138 human innateness of 137

540  Handbook of sensitive research in the social sciences kinaesthetic experiences 138–139 verbal explanations of 140 drawing elicitation interviews 409 ‘draw, write and tell’ technique 199–201, 203, 205–206, 206 dualisms 66, 73 Duff, C. 408 Duncan, D.T. 422 Dwyer 438 Dwyer, S.C. 290 dying 77–83, 86, 88–89, 301 The Dynamics of Transference 271 Dyregrov, K. 243 Earle, S. 306 Easton, S.D. 189 Eddo-Lodge, R. 438 elder abuse 480–481, 483 elderly care 125 Elias, N. 81 Elliott, I. 291, 342, 469 Elliott, S. 56 Ellis, C.S. 7 Ellis, J. 89, 301, 311 Ellsberg, M. 13, 487 emerging research methods 7 emoji 192 emotional choreographies 311 emotional competencies 330, 333 emotional distress 47, 56, 339 emotional expression 87 emotional expressivity 448 emotional fatigue 40 emotional impacts 487 emotionality 77, 79, 86 emotional labour 38–40, 41, 42–44, 265, 330–331, 346, 348, 367 emotionally-engaged researcher 331 emotional reflexivity 45 emotional resilience 59 emotional response 523 emotional safety 58, 292 emotional sensitivity 61 emotional stoicism 345 emotional strain 12 emotional support 61–62 emotional vulnerability 48 emotional wellbeing 42, 51, 452, 532, 534 emotion management 87 emotions 41, 44, 47, 58, 61, 87, 137, 277, 346, 349, 514, 523, 528 emotion work 329–330 empathy 45, 143, 181, 207, 242, 257, 261, 329, 331, 333, 346, 429, 509, 526 empirical research project 514

empiricism 99 empowerment 333 end of life 79 end-of-life care 58, 522–524, 527–530, 534 end-of-life care research 522, 534 end-of-life research 77, 529–530 England 32 England and Wales 185, 187, 195, 358, 479, 482 English-speaking studies 305 epistemological boundaries 80 epistemological criteria 97 epistemological reflexivity 9 erotic massage parlours 375 esearch ethics 217 ethical and moral dilemmas 518 ethical approach 230 ethical approval 258, 259, 308, 498 ethical behaviour 257 ethical challenges 309 ethical considerations 413 ethical guidelines 212, 214, 218, 322, 324, 413 ethical reflexivity 206, 243 ethical research conduct 331 ethical researcher 261 ethical sensitivity 206 ethical symmetry 226, 227, 228–230 ETHICHO project 317 ethics 39, 48, 50, 134, 236, 511, 518 ethics committees 469, 502, 534 ethics of listening 311 ethics of representation 115, 126 ethnic diversity 124 ethnicity 123 ethnographic methods 313 European Sex Workers’ Rights Alliance (ESWA) 376 everyday ethics 155 extra-ordinariness 80 face-to-face interviews 272, 325, 328 Fagan, J. 491 familiarisation process 193 Family Systems Theory 509 Farahani, H. 142 feelings 241–242, 380, 515 female-perpetrated sexual violence 462 female sex workers 371, 373 female street traders 152 female victimisation 187 femicide literature 470 femininities 447 femininity 460, 463 feminist praxis 178 Fenge, L.A. 9 Fernandes, L.M. 95

Index  541 Fernandes, S. 141 field access 81 field knowledge 82 field notes 531 fieldwork lessons 151 filicide 463, 465–466, 467, 469 Fine, M. 428 Finland 242, 246 Fish, B.J. 162 Fisher, C.B. 11 Flanagan, S.M. 185 fluid vulnerability 265 forbearance 229–230 Formby, E. 437 fostering representation 120 Foucault, M. 97, 498 four propositions 66 Fowler, A. 430 Fowler, J.A. 290 free music streaming sites 181 Freud, S. 271 Frosh, S. 450 Frost, Julia 304 Fulton, R. 88 functional referral system, violence survivors 377 fundamental human rights 210 fundamental rights, children 204 Gagné, P. 11 Gaston, L. 271, 275 gatekeepers 32, 34, 243, 247–248, 404, 405 recruitment and 404 GayArtist 428 gender 73, 121, 326, 327, 348, 458–459, 471 diversity 69 expression 72 identity 64–66, 70–73, 122, 437–438 invisibility 121 social category of convenience 459–461 gender-based violence 153, 354, 366 gender bias narrative 465 gender composition 454 gendered differences 455 gendered inequalities 48 gendered violence 459–460 gender equality 448, 460 gender identities 450, 455 gender issues 122 gender role socialisation 349 gender stereotypes 464 genetic inheritance 116 genuineness 257, 261 Germany 123, 213, 266, 269, 277, 303 gerontechnology development 119 Ghaziani, A. 66, 68

Giddens, A. 224 Gilgun, J.F. 9 Gillam, L. 412 Gillick competency 293, 431 Gilligan, C. 448 Girshick, L.B. 359 Glaser, B.G. 78, 89, 268 Global Health Nutrition Report 469 Glynn, M. 180 Gorin, S. 246 governance 39, 49 government care 384, 386–389, 394, 398 Graham, A. 227 Grandad’s Ashes 221 Grassroots Suicide Prevention 508 Green, A. 141 grief 79, 83, 85, 177, 227, 230, 302, 304–305, 307, 311, 447, 452 grief counselling 222 grieving children 221–222, 226, 227, 229, 231–232 Griffin, C. 404 grounded theory methodology 269 Groves, A. 461 Guillemin, M. 412 guilty conscience 222 Guner, C. 117 Gypsy 303 Haider, S. 118, 507 Hall, H. 26, 84 Hammond, N. 11 Hancock, B. 185 Harare 148, 151, 154 Harbison, J.R. 480 hard-to-reach people 1–2, 4, 10 hard-to-reach populations 25, 30, 107, 118, 318, 332 in quantitative studies 323–324 Harley, A. 147 harm 424 harm-reduction intervention methodology 110 Harries, B. 48 Harris, S.B. 481 Hart, R. 225–226 hate 421 hate crime 418–420, 423, 427 researching 419–422 hate crime research 418, 423, 430 hate scholarship 421 Hatzenbuehler, M.L. 422 Hayfield, N. 290 health and safety 414 healthcare professionals 278 health disparities 394

542  Handbook of sensitive research in the social sciences health promotion 231–232 Healy, J. 421 Heise, L. 13 Helfrich, C.A. 437 Henggeler, S.W. 100 Herrity, K. 176 Hesse-Biber, S. 7 heterogeneity 116, 118, 185 heterogeneity of old age 118, 120 heteronormativity 67 heterosexism 443 hidden and hard-to-reach groups 186 hijra 70 Hochschild, A. 329 Hockey, Jenny 85 Hollway, W. 453 Holt, A. 481 homelessness 384–392, 394 homicide rates 10 homosociality 27 Horgan, D. 225 hostility 419 Human Immunodeficiency Virus (HIV) 283 Human Research Ethics Committee 510 human resource management 348 Human Rights Watch (HRW) 440, 494, 496 Hunt, S.L. 47 Hurd, T.L. 412 Hureau, D.M. 94–95 Huuki, T. 7 Huxley, C. 290 hypothesis-driven processes 101 ideal victim 462 ideal victims 462 identity 70–71, 141, 435, 438, 443, 447 protecting 441 Iganski, P. 424 IM interview 193 impermeable categories 66 imprisonment 493 incarcerated inmates 494–495, 496, 503 in-depth interviews 405 Indigenous Australian communities 438 Indigenous cultures 460 individualised, risk-adapted internet-based intervention programme 267 infertility 307, 311 Information Privacy Act 2000 393 informed consent 214, 217, 243, 244, 259–260, 322, 390, 412, 488 inherent vulnerability 199, 204–205, 277 innovation 175 innovative research 7 insensitivities 339, 347, 350

insider/outsider paradigm 487 insider-outsider perspectives 291 insider perspectives 69 ‘insider’ research 241 instant messaging (IM) 184–186, 195 building trust and rapport 189 communicating emotion 191–192 data quality and depth 194–195 flexibility, maintaining 190–191 transcription 193 widening access and engagement 187–188 institutional compartmentalisation 81 institutional constraints 499 institutional ethics 38 intellectual disabilities 8 interconnectedness 222, 421 interest group politics 66 intergenerational care 223 intergenerational dialogue 227 intergenerational forbearance 231 intergenerational perspective 226 The International Handbook on Hate Crime 419 Internet-enabled smartphones 181 internet-related risks 218 interpersonal violence 483 interpersonal violence and abuse (IPVA) 479 against older adults 480 interpretations 248 intersectional approaches 120 intersectional identity 72 intersectionality 385, 386, 391, 394, 397, 437 intersubjectivity 101, 267 intervention-hypothesis 100 interview participants 259–260 interview relationship 260 interviews 193, 244–245, 310, 326, 328–329, 404 interview studies 247–248 intimate partner violence 30–31 intimate partner violence (IPV) 437, 441, 443 intimate violence 483 invisibility 364 IRIS Plus project 267, 269 Islam, M. 47 I-Thou relationship 257 Jabbar, S. 141 Jack, D.C. 124 Jackman, P. 56 Jackson, S. 12 Jacobs, L. 56 James, A. 224 Japan 47 Jaul, E. 116 Jayne, M. 6, 403, 414 Jefferson, T. 453

Index  543 Jewkes, R. 359 job security 43 Joiner, T. 510 joint interviews 327 Jones, K. 309–310, 524 Jordan 29 Kaar, M. 405 Kawulich, B.B. 189 Kelly, L. 31 Kesby, M. 412 Khmer Rouge regime 13 Kimura, A.H. 47 kindness 261 Kingston, S. 11 Klein, M.W. 103 Knott, E. 243 Kress, G. 138 Kurdistan 27 Kwansah-Aidoo, K. 439 labour pain 12, 13 emotional impact 12 LaChance Adams, S. 458 Langer, R. 25 language 69, 80, 238, 249, 285, 301, 304, 312, 322, 459, 464 evolving nature of 69 role of 246–247 Latour, B. 117 Layne, L.L. 307 Lazard, L. 9 least-adult approach 225 Leavy, P. 7 Lee, R. 133 Lee, R.M. 25, 347 legal guardians 216 legalisation 371 legitimacy 98 legitimacy, people’s intentions 442 Leicester Hate Crime Project 420 Leisher, S.H. 309 Lenette, C. 141 Lenning, E. 440 Les Back, L. 7 Letherby, G. 311, 356, 365 Levinas, E. 224 Lewin, K. 223 Leyshon, M. 409 LGBTQ CALD IPV research 438 LGBTQ+ CALD people 442–443 LGBTQIA+ communities 286, 290 LGBTQIA+ community 284 LGBTQ+ people 64–65, 70–71, 418–419, 421, 429–431, 441

advocacy organisations 69 culture 69 diversity within 72 hate crime 418 identities 69, 72–74 research 74 researching hate with 422–425 significance of 65–66 LGBTQ++ people 418 LGBTQ+ research 44 LGBTQ+ teachers 254 LGBTQ+ victims 427 LGBTQ+ young people 418 researching with 425–427 Liamputtong, P. 132, 141, 159 liberal democracies 439 life 526 life outside of research 519 Lincoln, S. 426 Lind, E. R. M. 305 L’interférence 98 Lisbon 200 listening 176 Lištiaková, I.L. 6 literature, finding 482 Little, J. 466, 471 lived experience 287, 292, 296, 518 lived SRH experiences 284 Lloyd, C.E. 85 Lobo-Dos-Santos, T. 95 loneliness 125 Lone Working Policy 514 love 257 Luna, F. 265 Lu, Y. 10 Lyon, P. 137–138 male sex work 375 male sex workers 373, 375, 375 male victimisation 187 Mallon, S. 93, 175, 291, 342, 469 Mannay, D. 13 man researching men 454 Mapedzahama, V. 439 Marco, C.A. 117 marginalisation 149, 285, 384–385, 385, 389, 394, 397, 420, 428 health burden of 387–388 marginalised groups 8, 11 marginalised people 13–14 Marquart, J.W. 499 Marriage Act of Australia 439 Marsh, H. 180 Martikainen, J. 140–141 Maruna, S. 103

544  Handbook of sensitive research in the social sciences masculine defensiveness 449 masculine identities 454 masculinities 447, 448, 450, 454, 460, 463 Mateen, Omar 424 maternal filicide 458, 466 Mathews, B. 294 Maunu, A. 410 Mauthner, N.S. 485 McAvoy, J. 9 McCann, I. 367 McDonald, J. 47 McLean, K. 40, 45 Meares, T.L. 491 media 457, 463–468 role of 246–247 media literacy 213 Melrose, M. 12 memorialisation 311–312 memory 181 memo-writing 531 men 448 mental health 265–266, 271, 274, 276–278 mental health care 507 mental healthcare professionals 278 mental health issues, 452 mental health professionals 266, 351 mental health, weaponising 468 methodological challenges 327 methodological hurdles 482 methodological hypothesis 96 methodological nationalism 240 methodological protocol 319 methodological reflections 151 #MeToo movement 30, 457 Metzenrath, S. 379 Michael-Fox, B. 311 microaggressions 64 Middlemiss, A.L. 305, 309 Mierke, K. 265 migrancy 239 migrants 239 migration 237, 243 Miller, M. 14, 497 Mill, J.S. 97 Milne, M.J. 85 mindfulness practice 531 Minuchin, S. 509 miscarriage 300, 304–308, 310 mixed-methods approach 277, 319, 360 mixed methods research 103 mixed research methods 380 Mol, A. 313 Molenaar, P.C.M. 107 Moore, L.W. 14, 497 moral integrity 216

Moran, R.J. 367 Morrison, A.M. 437 Morrow, V. 223–224 mothers 466 mothers and innocence 467 motivations 40, 453 mourning 77, 79, 311 MSM (men who have sex with men) 375 multi-faceted vulnerability 3 Murphy, A. 461 Murphy, P.J.M. 249 Murphy, S. 93, 524 Musavi, S. A. 141 music elicitation 174, 181 outlining 179–181 principles of feminist research 178–179 Nadal, K.L. 64 narrative research 175–176 Narratives of Covid 512 National Victimisation Survey (USA) 484 National Women’s Health Strategy 460 ‘natural’ death 86 Navigating Fieldwork in the Social Sciences: Stories of Risk, Danger and Rewards 11 negative emotions 42 Nelson, A. 435, 438 neoliberalisation 43 Nespor, J. 119 Newman, C.E. 286 Nilan, P. 10 Nogueira, P. 160 Nomazhwezi Mayaba, N. 141 non-governmental organisations (NGOs) 371 non-verbal communication 328 non-verbal cues 191 normative socialisation 64 norms 82 Northern Portugal 107, 110 Norwood, T. 310 Nyantakyi-Frimpong, H. 154 objective drawing 137 objectivity 178, 346 object of research 80 occupational science 355 occupational therapy 355 Occupational Therapy Europe (OT-EU) 355 occupation/s 354 Office of the High Commissioner for Human Rights 464 Ogilvie, L.D. 290 O’Kane, C. 228 old age 120 older adult 484

Index  545 older adults 116–118, 119, 479–482, 484–485, 488 O’Leary, P. 429 online communication 217 online research phase 268 Opdenakker, R.R. 194 open coding phase 270 open-ended narrative interviews 180 openness 329 open spaces 124 ordinariness 80 otherness 414 ouch factor 41 outreach 95–96 outsider insider 376 outsiders 498 unknown system as 498 overlapping marginality 3 overprotective attitude 228 Ovesen, N. 30–32 Packard, J. 147 Pain, R. 143 Papazian-Zohrabian, G. 141 parenting 384 parents of underage children 236, 238 participant-driven methodology 7 participant observation 410–411 participant reimbursement 394 participation 125 participatory-action research 102, 377, 395 participatory design 118–119, 119, 122 accessibility issues 122–123 disabilities 122–123 participatory photovoice 147 participatory research 222–224, 229–232 ethical symmetry in 226–227 links to childhood studies 223–224 and shared responsibility 225–226 paternal filicide 466 paternalistic attitude 231 Patulny, R. 42 Pearce, R. 49 Pearlman, L.A. 367 pedagogical interventions 222 pedagogy 230 Peel, E. 303 peer interviews 407 peer-led organisations 287 peer support 511 Pereira, B. 95 perinatal bereavement 300–302, 311–312 perinatal losses 302 personal experience 44 personal identities 340

personal life experiences 153 personal motivation 58 Pharmaceutical Benefits Scheme (PBS) 495 Phillips, J. 430 photo elicitation 181 photo-taking ethics 150 photovoice 147–148, 151 photovoice method physical wellbeing 532–533 piety 82 Pillay, S.R. 44 Pillow, W. 308, 485 pilot testing 69 Pithavadian, R. 440 Pittaway, E. 241 Pizzey, Erin 470 political motivation 56 Poppelreuter, S. 265 Popper, K.R. 97 Portugal 206 positionality 255, 288, 289, 411, 438 reflexive about over-looked aspects of 411 post-graduate supervision 55 post-traumatic stress disorder 528 Powell, K. 459 Powell, M.A. 26 power 118–120, 223, 238 power asymmetries 212, 238, 241–242 power, balancing 122 power dynamics 73, 115, 119, 155, 202, 205, 326–327, 332 researcher and participants 155 power imbalance 198, 206 power imbalances 115, 118, 155, 179, 259, 522 power relations 119, 143 pracademics 374, 379–380 practitioners, recruiting 484 Prasheela, K. 141 pre-brief 518 precarious employment 42 Preece, D. 6 pregnancy 384, 391, 393 pregnancy loss 300, 305, 307, 311–313 as sensitive issue 301–304 pregnancy loss awareness activism 307 pre-interviewing 513 prejudice 419 prejudicial attitudes 437 primum non nocere 256 Prins, E. 147 priority populations 282, 296 sensitive issues with 295–296 prisoners 500 prison health 496 prison populations 499

546  Handbook of sensitive research in the social sciences prison research 494, 497, 499–502 prisons 491, 495, 499, 502 privacy by design 218 privacy concerns 216 private self 330 Probst, B. 9 procedural ethics 38, 47 professional emotional support 330 professional identity 347 professional image 347–349 professionalism 46 professional network 518 professional researcher 330 professional researchers 261 professional roles 215 scope and limits 215 professional support 518 Prout, A. 224–225 psychological comorbidities 388 psychological harm 528 psychological safety 38, 291 psychological stress 276 psychological wellbeing 532 psychotherapy 271–272, 274 public ridicule 470 public space 124 public spaces 111, 123–124 Puwar, N. 7 qualitative approach 5–6, 284–285 qualitative death studies 77, 79, 88 qualitative enquiry 5 qualitative interviews 244, 309 qualitative methods 78, 318 traditional and creative 412 qualitative research 6, 8–9, 45, 79, 88–89, 175, 265–266, 277–278, 284–285, 328–329, 332, 346, 392, 420, 482 qualitative researcher 255, 272 qualitative social research 306, 310 qualitative SRH research 292, 296 quantitative research 69 queer identities 429 queer identity 73 queer people contemporary criminalisation of 440 queer reflexivity 47 Quest, T. 117 race 123–124, 239 racism 237, 245, 421, 427, 441 Rager, K. 26 Ragsdale, K. 11 rape 358, 367, 487 rapport 323, 392

Ratcliffe, S.E. 5 Ratnam, C. 175–176 Rauwerdink‐Nijland, E. 94 Ravn, S. 408 Raymond, J. 481 Reagan, L.J. 304 recruitment 513 Reed, K. 311 Reed, Kate 306 Reeves, K.A. 481 reflective practice 531 reflexive journal 518 reflexivity 9, 9, 206, 261, 266–267, 277–278, 296, 300, 306, 340, 346, 508, 515, 531 essence of 8 rehabilitative methods 491 Reid, G. 440 Reis, Arianne 500 remote interviews 245 Renzetti, C. 133 Renzetti, C.M. 25, 436 representation 115, 125, 127 representations 248 reproductive losses 302–303 research 44, 388, 431, 523, 526–528, 534 lived experience and personal investment in 44–45 preparing for 524 research activities, spacing 531 research alliance 273–274 research approach 394 research culture 430, 530 researched relationship 499 researcher 499, 527 researcher assumptions 30 researcher heterosexual/LGBTQ+ 438 researcher–participant relationship 326, 332 researcher positionality 358 researcher reflexivity 288 researcher–researched relationships 309 researchers 86, 427–428, 507, 520, 533 researcher safety 291 researcher’s own personal experience 367 researchers’ positionality 241 researcher’s positionality 326 researchers’ wellbeing, nurturing 397 researcher vulnerability 26, 30, 32, 301, 307, 312 researcher wellbeing 50 research ethics 83, 134, 210–211, 212, 213–214, 217, 227 research goals 213 research interaction 186, 190–191, 193–194 research method 98 research methods requirements 98 research, minors 214

Index  547 research participant 344 research participant concerns 441 research participants 31, 140, 227, 238, 248, 255–257, 310, 332, 392 safeguarding the wellbeing of 392–393 research participation remuneration for 393 research recruitment 484 research supervisor 260 research translation 396 resilience 38, 42, 379 respondent disclosure 366 revival of death 78 Richards, S. 26 right of same-sex people 64 rights by design 218 risk 511, 513 risk and harm 11 risk assessment 292 Robards, B. 426 Robinson, D. 507 Robinson, N. 43 Roebuck, J.B. 499 Rogers-Shaw, C. 13 role conflicts 275 role diffusion 215 Roma 100, 303 Romani children 102, 105 Romani cultures 100 Romani youth 100, 102–103, 108 Rosenblatt, P.C. 83 Rose, R. 6 Rossi, A. 435, 438 Roth, W.M. 224 Rousseau, C. 141 Royal Commission into Family Violence 436 Rynne, S. 435, 438 Saavedra, L. 466 safe spaces 122 salience 440 salient identity 441 Saltzman, L.Y. 189 same-sex attraction 357 same-sex marriages 439 sanction 2 Sanderson, R. 56 Savolainen, J. 357 scepticism 4 Schinkel, M. 500 Schober, M.F. 188 school absenteeism 104 Schütz, A. 80 scientific knowledge 111 scientific literature 96

scientific method 97 Scottish Public Health Network 479 secondary distress 84 secondary trauma 48–49 second-trimester pregnancy loss 305 security threats 213 Seear, K. 40, 45 Segulin, A.M. 94 self-care 46, 49 self-care plan 530 self-censorship 195 self-confidence 232 self-consciousness 266 self-determinacy 136 self-determination 3, 218 self-empowerment 321 self-expression 137 self-identity 44, 70 selfish 342 self-medication 202 self-reflection 68, 241 self-silencing 123–124 semi-structured interviews 405 sense-making 313 sensitive gendered experiences 153 sensitive language 301 sensitive mode of research 304 sensitiveness 132, 134 sensitive research 1–2, 5, 9–10, 12–13, 25, 27, 33–34, 38, 43, 45–49, 84–85, 87, 118, 127, 133, 214, 226, 254, 282, 291, 339, 349–351, 365, 438, 443, 448, 459, 469, 506–507, 517, 519–520 cultural specificity 29–30 defined 1 emotional impact on researchers 41 emotional labour and 40–41 emotional landscape of conducting 42–43 framework for good practice in 517–519 methodological considerations 5 principles and practices in conducting 519 prison research in 500–502 prison research is 497 social sciences 25–27 and supervision 56 understanding 255 on workplace sexual harassment 341–342 sensitive research projects 186 sensitive research topics 133, 148, 175, 349 sensitive social science research 148, 149 sensitive SRH research 291–293 sensitive subject areas 210 sensitive subjects 184–186, 190, 192, 194–195 sensitive topics 13, 25–26, 46, 61, 132–135, 141–142, 149, 203–204, 214–215, 242, 278,

548  Handbook of sensitive research in the social sciences 291, 303, 329, 332–333, 339, 346–347, 365, 457, 471, 508, 534 sensitive work 39 sensitivities 339, 345, 349–350, 522 sensitivity, research 323 sentencing 492 Serres, M. 98 Sewell, K. 141 sex 72, 345 sexism 421, 427 sexual and domestic violence 457, 463, 468, 471 sexual and domestic violence victimisation 463 sexual and reproductive behaviour 286 sexual and reproductive health (SRH) 281, 283–284, 286–287, 289, 292, 294, 296 as sensitive research 282 data access with publication 295 mandatory reporting of potential harm 294 translation to practice and dissemination 295 sexual assault 293, 354, 356, 358–362, 364, 367, 496 sexual diversity 69 sexual harassment 47–48, 340–345, 347–350 sexual identities 48, 66 sexual identity 72 sexuality 72–73 sexual nature 348 sexual offences 359 Sexual Offences Act (2003) 358, 483 sexual orientation 64, 69–70, 72–74 sexual orientations 64 sexual victimisation 186 sexual violence 47, 457, 479, 481–482 sex work 185–187, 371–373, 377, 379–380 epistemologies on 372 sex worker 380 sex workers 4, 11, 185, 187–188, 374, 376–377, 380–381 sex work practitioner research 379 shared responsibility 224 shared vulnerability 310 Sharpe, L. 229 Shaw, C.R. 104 Shelemay, K. 179 Sherry, E. 40, 346 Shevlin, M. 6 Shih, L.-W. 305, 312 Shon, P.C. 481 sibling caring roles 202 Sieber, J.E. 13, 282 Sikes, P. 26 silence 359, 364 Silverio, S.A. 6, 9 Sim, J. 190 Simpson, E,K. 437

Simpson, K.L. 468 single case study designs, SSW 104 situatedness 117 situatednesses 127 sketching 137 skilled interviewer 259 skilled researcher 262 skills audit 518 Small, N. 78 Smith, A.K.J. 286 Smith, F. 404 social action 82 social actors 39 social asymmetry 225 social change 14 social connectedness 126 social determinants of health 385, 502 social discourse 463 social identities 453 social inequities 65 social interactions 454 social interventions 109 socialisation 64, 266 social justice 127, 436 social marginality 426 social media 464 social memory-making 312 social reality 224 social recognition 302 social relationships 120, 124 social representation 119 social reproduction 49 social research 26, 184, 428 social researchers 427 social science research 77, 155 social science researcher 1–2, 7, 9 social scientists 94 social street workers 93–94 social street work (SSW) 93–99, 101, 103–104, 110–111 as data collection technology 106–107 as research design 102–106 attrition, longitudinal research 110 case studies 104–106 in data construction and production technique 108–109 defined 94 definitions 94 outcomes, evaluation studies 95 process evaluations 109 research method and advantages 102 in time-intensive within-unit-of-analysis research 107–108 social taboos 300 social transitions 384

Index  549 social vulnerabilities 126, 420 social vulnerability 3 social work 507 social workers 242, 374 societal attitudes 438 societal factors 43 societal prejudices 317 societal resistance 512 societal transformation 78 societal vulnerability 117 sociocultural categories 120 Sociological Research Association (SRA) 508 Somalis 32–33 songs 174 Spalek, B. 427 special education programme evaluation 104 Spicker, P. 412 Sprankle, E. 380 Sri Lanka 343, 348 Sri Lankan culture 341 Stanley, B. 13, 282 Stanley, C. 491 Stanley, L. 176 static factors 438 stereotypes 461, 471, 483 myths and reliance on 461–462 stigma 65–66, 270, 285, 300, 302, 387 stigma contagion 11 stigmatisation 389 stillbirth 305–306, 308 stillbirths 303 stille geburt 305 Stith, I. 224 storytelling 414 Straus, M.A. 462 Strauss, A.L. 78, 89, 268 street-based fieldwork 374 street-based youth worker 93 StreetSafe Boston project 95 street traders 148, 151, 155 relationship, urban authorities 154 resourcefulness, adaptability and resilience of 152 spatial strategies 151–152 , 155 street trading 149 street workers’ bodies 108 strength-based approaches 283 stress 214, 277 Stutterheim, S.E. 5 subjective distress 12 subjective drawing 137 subjectivity 86, 201, 346 Sue, D.W. 64 suicidal death 222 suicidality 422

suicide 221–222, 226, 230, 506–509, 513–514, 520 suicide research 514 supervision 55, 58, 215, 454 supervision model 50 supervisors 55, 57, 60–62, 276–277, 511, 514–517 narratives 57–61 supervisory meetings 59 support 511 support network 532 survival 361–362, 367 alcohol use 362–363 self-harm and suicidal behaviour 363–364 Svens, C. 27, 34 Svens, Christina 28 Sweden 27 Swiss fieldworks 373 Switzerland 120, 371, 373, 375, 381 sympathy 346 systematic impact analysis 214 systematicity 99 system complications 498 tabula rasa 80 Taha, D. 248 taking leave 531 Taylor 438 Taylor, S.C. 362 Tewksbury, R. 11 therapeutic alliance 271–272 Thomas, N. 228 Thorneycroft, R. 350 time 531 to distance and rest 533 time-intensive within-unit-of-analysis research 107 Törrönen, J. 410 transcription 193, 519 transparency 216, 249, 261 trauma 339, 365, 429 traumatic information 366 ‘traumatic’ research 365 Traveller communities 303 Tronto, J.C. 231 trust 323, 329 trust-building 180 truth 176 truthfulness 261 Tsantefski, M. 429 Tsirimokou, A. 471 Tumanyan, M. 7 Uganda 141 UK Research Excellence Framework 42 ultra-rationalism 97

550  Handbook of sensitive research in the social sciences unchanging categories 66 unconscious bias 64–67 undocumented immigrants 4 United Nations Office of Drugs and Crime (UNODC) 493, 498 universal health insurance schemes 394 unstructured interviews 181 urban authorities 154 Valentine, G. 6, 403, 414 value-judgment-free research 82 van Blerk, L. 2, 199 Van Campen 179 van Leeuwen, T. 138 Van Wolputte, S. 162 Velardo, S. 56 verbal thinking 138 vicarious traumatisation 366 victim-blame 481 victim-blaming tactics 467 victimisation awareness 463 victims, recruiting 484 victims/survivors 360 survival reactions of 360–362 victim trauma 215 violence 185, 245, 427, 442, 465, 469–470 experiences of 442 violence against women and girls 479, 487 Violence Against Women and Girls (VAWG) 359 visual cues 272 visualising methods 312 visual methods 7, 198–199 visual thinking 138, 142 in vitro fertilisation (IVF) treatments 317–318 Vivienne, S. 426 voice 120 voluntary consent 244 von Benzon, N. 2, 199 vulnerability 2, 30–31, 45–46, 84, 117, 123–124, 127, 155, 199, 206, 237–238, 240, 249, 262, 265–266, 277, 282, 301, 320, 329, 384–385, 386, 397, 436, 507, 512, 523, 534 in academic research 48–49 health burden of 387–388 in interaction and without interaction 276 of researchers 528–529 of research participants 30 responsibility and recognition of 276 vulnerability of old age 118 vulnerable groups of people 133–135, 138, 142–143 vulnerable people 1, 8, 14 vulnerable population 199, 204, 497 vulnerable populations 3, 14, 33, 116–117, 120, 156, 262

vulnerable subjects 30 vulnerable urban populations 154 Wadds, P. 10 Waitt, G. 408 Walker, A. 486 Wang, C. 8 Wanka, A. 124 Waterfield, J. 190 Waters, J. 430 Weaver-Hightower, M.B. 312 wellbeing 40–41, 56, 60, 64, 74, 127, 132–133, 156, 184, 191, 205, 207, 211–212, 214, 216– 217, 232, 256–257, 261, 326, 333, 384–385, 388, 392, 393, 396–397, 447, 471 Westaby, C. 430 West, C. 460 Western culture 460 Westmarland, N. 31 Westwood, S. 120–121, 127 Whiteford, G.E. 355 Why I am No Longer Talking to White People about Race 438 wife abuse, researching 30 Williamson, E. 366 Willis, D.G. 189 Wilson, N. 7 Wilson-Smith, K. 468 Witty, K. 46 woman-to-woman rape 354, 356–357, 359–362, 364, 367 woman-to-woman sexual abuse survivorship 368 woman-to-woman sexual perpetration 358 Woman-to-Woman Sexual Violence: Does She Call It Rape? 358 woman-to-woman violence 357 women 340, 345, 457 Wood, L. 141 Wood, S. 176 Woolf, J. 356 working alliance 273 workload 531 Workman, A. 436 workplace 343–344, 346 workplace bullying 254, 256 workplace sexual harassment 342 World Federation of Occupational Therapists (WFOT) 355 World Health Organisation 282, 480 World Migration Report 237 Wray, S. 487 Wright, P. 453 Wyatt, J. 311 Wyles, P. 429 Wyness, M.G. 225, 229–230

Index  551 Yalaz, E. 238, 249 young men 448 young people 403–404, 431 interviewing 405–406 youth suicide 506

Zapata-Barrero, R. 238, 249 Zempi, I. 423 Zetzel, E.R 271 Zimbabwe Chamber of Informal Economy Associations (ZCIEA) 150 Zimmerman, D.H. 460