Ana Patrícia Hilário and Rafael Fábio Augusto Considered Populations Vulnerable with Sensitive Topics Researching Dilemmas in Practical Ethical and Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable Edited by Ana Patrícia Hilário and Fábio Rafael Augusto Printed Edition of the Special Issue Published in Societies www.mdpi.com/journal/societies Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable Editors Ana Patr´ıciaHil´ario F´abio Rafael Augusto MDPI • Basel • Beijing • Wuhan • Barcelona • Belgrade • Manchester • Tokyo • Cluj • Tianjin Editors Ana Patr´ıcia Hil´ario F´abio Rafael Augusto Instituto de Ciências Sociais, Instituto de Ciências Sociais, Universidade de Lisboa Universidade de Lisboa Portugal Portugal Editorial Office MDPI St. Alban-Anlage 66 4052 Basel, Switzerland This is a reprint of articles from the Special Issue published online in the open access journal Societies (ISSN 2075-4698) (available at: https://www.mdpi.com/journal/societies/special issues/Practical Ethical Dilemmas). For citation purposes, cite each article independently as indicated on the article page online and as indicated below: LastName, A.A.; LastName, B.B.; LastName, C.C. Article Title. Journal Name Year, Article Number, Page Range. ISBN 978-3-03943-394-0 (Hbk) ISBN 978-3-03943-395-7 (PDF) Cover image courtesy of Ana Patr´ıcia Hilario.´ c 2020 by the authors. Articles in this book are Open Access and distributed under the Creative Commons Attribution (CC BY) license, which allows users to download, copy and build upon published articles, as long as the author and publisher are properly credited, which ensures maximum dissemination and a wider impact of our publications. The book as a whole is distributed by MDPI under the terms and conditions of the Creative Commons license CC BY-NC-ND. Contents About the Editors .............................................. vii Preface to ”Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable” .......................................... ix Pernille Skovbo Rasmussen and Anne Katrine Pagsberg Customizing Methodological Approaches in Qualitative Research on Vulnerable Children with Autism Spectrum Disorders Reprinted from: Societies 2019, 9, 75, doi:10.3390/soc9040075 ..................... 1 Ana Patr´ıciaHil´arioand F´abioRafael Augusto An Exploration of the Practical and Ethical Issues of Research Using Multi-Visual Methods with Children Affected by Chronic Pain Reprinted from: Societies 2019, 9, 81, doi:10.3390/soc9040081 ..................... 17 Natalie Tyldesley-Marshall, Sheila Greenfield, Susan J. Neilson, Jenny Adamski, Sharon Beardsmore, Martin English and Andrew Peet Exploring the Role of ‘Shadowing’ as a Beneficial Preparatory Step for Sensitive Qualitative Research with Children and Young People with Serious Health Conditions Reprinted from: Societies 2020, 10, 14, doi:10.3390/soc10010014 .................... 29 Paula Cristina Martins and Ana Isabel Sani Consent for Research on Violence against Children: Dilemmas and Contradictions Reprinted from: Societies 2020, 10, 15, doi:10.3390/soc10010015 .................... 43 Mathilde Cecchini Reinforcing and Reproducing Stereotypes? Ethical Considerations When Doing Research on Stereotypes and Stereotyped Reasoning Reprinted from: Societies 2019, 9, 79, doi:10.3390/soc9040079 ..................... 51 Ingfrid Mattingsdal Thorjussen and Terese Wilhelmsen Ethics in Categorizing Ethnicity and Disability in Research with Children Reprinted from: Societies 2020, 10, 2, doi:10.3390/soc10010002 .................... 65 J. Michael Ryan The Problematics of Assessing Trans Identity in Survey Research: A Modest Proposal for Improving Question Design Reprinted from: Societies 2019, 9, 85, doi:10.3390/soc9040085 ..................... 81 Joana Catela “I Don’t Have the Nerve to Tell These People That I Cannot Help Them!”: Vulnerability, Ethnography, and Good Intentions Reprinted from: Societies 2019, 9, 84, doi:10.3390/soc9040084 ..................... 95 Daria Litvina, Anastasia Novkunskaya and Anna Temkina Multiple Vulnerabilities in Medical Settings: Invisible Suffering of Doctors Reprinted from: Societies 2020, 10, 5, doi:10.3390/soc10010005 ....................109 Catarina Delaunay, Am´eliaAugusto and M´arioSantos Invisible Vulnerabilities: Ethical, Practical and Methodological Dilemmas in Conducting Qualitative Research on the Interaction with IVF Embryos Reprinted from: Societies 2020, 10, 7, doi:10.3390/soc10010007 ....................127 v Sharon Mallon and Iris Elliott The Emotional Risks of Turning Stories into Data: An Exploration of the Experiences of Qualitative Researchers Working on Sensitive Topics Reprinted from: Societies 2019, 9, 62, doi:10.3390/soc9030062 .....................143 Lynette Sikic Micanovic, Stephanie Stelko and Suzana Sakic Who else Needs Protection? Reflecting on Researcher Vulnerability in Sensitive Research Reprinted from: Societies 2020, 10, 3, doi:10.3390/soc10010003 ....................161 vi About the Editors Ana Patr´ıcia Hil´ario is a sociologist and a Research Fellow at the Instituto de Cienciasˆ Sociais, Universidade de Lisboa (ICS-ULisboa). Her current research project ’Making visible the invisible: an exploration of family experiences and management of chronic pain in childhood’ is funded by the Portuguese Foundation for Science and Technology (FCT), under the Stimulus of Scientific Employment 2017 (CEECIND/03970/2017). She had been a guest lecturer at the Escola Superior de Saude,´ Instituto Politecnico´ de Santarem´ (ESSS-IPSantarem).´ She had been involved in several national and international projects in the fields of gender, health and the life course. She had been a board member of the European Research Network of Sociology of Health and Illness (ESA-RN16). She is currently the Vice-Coordinator of ESA-RN16. Ana Patr´ıcia graduated with a Ph.D. in Medical Sociology from the Royal Holloway, University of London, in 2015. She has a Bachelor’s degree in Sociology and Planning and a Postgraduate degree in Family and Society from the Instituto Universitario´ de Lisboa (ISCTE-IUL). Her current main research interests focus on the sociology of health and illness, the sociology of gender and the sociology of childhood and youth. F´abio Rafael Augusto is a Ph.D. Candidate in Sociology at the Instituto de Cienciasˆ Sociais, Universidade de Lisboa (ICS-ULisboa) and currently holds a Ph.D. grant (SFRH/BD/130072/2017) from the Portuguese Foundation for Science and Technology (FCT). His doctoral research seeks to characterize and analyze food aid initiatives operating in Portugal. He had been a guest lecturer at the Escola Superior de Saude,´ Instituto Politecnico´ de Santarem´ (ESSS-IPSantarem),´ and has been involved in two research projects (“TRANSE-AC: Social and Environmental Transition – Alternatives and Commons” supported by Programa Pessoa/FCT and “FFHT: Families and Food in Hard Times” funded by the European Research Council). He holds an MSc in Sociology: Exclusion and Social Policies and a BSc in Sociology (UBI, Universidade da Beira Interior). His research interests include food (in)security, poverty, social exclusion and social vulnerability. vii Preface to “Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable” Conducting social science research is a complex process. In addition to the usual theoretical and methodological concerns, researchers have to contemplate several ethical issues and answer several questions: what impact will the research have on the various actors involved? What risks can arise? What strategies should be adopted? These and other issues, however complex they may seem, must emerge at an early stage of the research, so that researchers have time to mobilize themselves in the creation of coping mechanisms. In this initial phase of research preparation and planning, researchers must also seek to answer two important questions: will the research focus on a (potentially) vulnerable group? Will the topics in the research be (potentially) sensitive? If the answer is positive to at least one of these questions, researchers have a responsibility to search for or create solutions for any challenges that might (predictably) arise. This book fundamentally seeks to support all researchers who interact with vulnerability and sensitivity in the context of social research by providing various research experiences, as well as the elements that characterize them. Whilst there has been some important debate about the theoretical, methodological and ethical issues of conducting research on sensitive topics and/or with vulnerable populations [1– 3], the number of scholarly publications that are focused solely on these topics is limited and not up to date [4, 5]. The work published so far tends to focus on the emotional labour developed by researchers when doing these types of studies, and, in particular, on the strategies employed by them to safeguard the well-being of the research subjects, as well as their own well-being [6–10]. What this work also suggests is that the emotional impact of developing research with vulnerable populations and/or on sensitive topics should be understood as a form of risk, in the sense that researchers might be exposed to distressing events and accounts throughout the entire research process: from