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Societies
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Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations...
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Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable

A special issue of Societies (ISSN 2075-4698).

Deadline for manuscript submissions: closed (30 November 2019) | Viewed by 60271

Printed Edition Available!
A printed edition of this Special Issue is available here.

Special Issue Editors

Dr. Ana Patrícia Hilário

E-Mail Website
Guest Editor
University of Lisbon, Lisbon, Portugal
Interests: sociology of health and illness, sociology of diagnosis, sociology of gender, sociology of childhood and youth
Dr. Fábio Rafael Augusto

E-Mail Website
Guest Editor
University of Lisbon, Lisbon, Portugal
Interests: surveillance, social media, political participation, food (in)security, poverty and social exclusion

Special Issue Information

Dear Colleagues,

Conducting research with populations considered vulnerable might be fraught with ethical and practical dilemmas that might place the development of the research at risk. People can be defined as vulnerable when they lack the autonomy to make their own decisions or experience impairing conditions, which might constrain their physical and/or cognitive autonomy. These dilemmas might be even more challenging when the nature of the topic is sensitive (e.g., sacred, stressful, and/or private). There is little information available in the field of social sciences on the ethical and practical dilemmas faced by researchers when researching sensitive topics with populations that are considered vulnerable. This Special Issue intends to build awareness of these challenges and offer guidance for researchers who intend to develop research on sensitive topics with vulnerable populations. We invite contributions, whether theoretical or empirical, that address but are not limited to the following topics: (i) the analysis and conceptualization of sensitive topics and vulnerable populations; (ii) accessing and recruiting vulnerable populations to talk about sensitive topics; (iii) responsibilities and conflicts of developing research on sensitive topics with populations considered vulnerable; (iv) issues of privacy, anonymity, and confidentiality; (v) risks when dealing with vulnerable populations and sensitive topics; (vi) the safety and protection of participants and researchers; and (vii) personal, ethical, and methodological issues, in general.

Dr. Ana Patrícia Hilário
Dr. Fábio Rafael Augusto
Guest Editors

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Published Papers (12 papers)

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Research

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14 pages, 276 KiB  
Article
Exploring the Role of ‘Shadowing’ as a Beneficial Preparatory Step for Sensitive Qualitative Research with Children and Young People with Serious Health Conditions
by Natalie Tyldesley-Marshall, Sheila Greenfield, Susan J. Neilson, Jenny Adamski, Sharon Beardsmore, Martin English and Andrew Peet
Societies 2020, 10(1), 14; https://doi.org/10.3390/soc10010014 - 30 Jan 2020
Cited by 1 | Viewed by 3623
Abstract
This article aims to explore and record the role of shadowing in preparation for a qualitative study involving children and families with sensitive health issues. The researcher was engaged for a study involving qualitative research involving paediatric patients (those under 18 years old) [...] Read more.
This article aims to explore and record the role of shadowing in preparation for a qualitative study involving children and families with sensitive health issues. The researcher was engaged for a study involving qualitative research involving paediatric patients (those under 18 years old) and their families, but was unfamiliar with a hospital environment and interviewing children and young people (CYP) with a serious health condition. The researcher ‘shadowed’ healthcare professionals (HCPs) at a children’s hospital during their day-to-day work in order to prepare for the research interviewing. From shadowing, the researcher gained: familiarity with a hospital environment, organisational processes, and medical terminology; an understanding of the appropriate ways to refer to patients; confidence and competence in talking to children with serious health conditions; and resilience to becoming upset during interviews while hearing patients’ distressing stories—they became ‘desensitised’. Shadowing can therefore be highly beneficial for researchers undertaking research in unfamiliar contexts, environments, and populations prior to interviewing. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)
15 pages, 272 KiB  
Article
Invisible Vulnerabilities: Ethical, Practical and Methodological Dilemmas in Conducting Qualitative Research on the Interaction with IVF Embryos
by Catarina Delaunay, Amélia Augusto and Mário Santos
Societies 2020, 10(1), 7; https://doi.org/10.3390/soc10010007 - 27 Dec 2019
Cited by 4 | Viewed by 4810
Abstract
The burden of deciding the fate of the supernumerary human embryo created in vitro in the context of Assisted Reproductive Technologies rests on the beneficiary couples or individuals who conceived the parental project. The beneficiaries must also take on the responsibility of choosing [...] Read more.
The burden of deciding the fate of the supernumerary human embryo created in vitro in the context of Assisted Reproductive Technologies rests on the beneficiary couples or individuals who conceived the parental project. The beneficiaries must also take on the responsibility of choosing whether to donate surplus embryos either to others or to scientific research, or to request their destruction. Vulnerable beings, weakened from the point of view of their identity (facing the social stigma still associated with some circumstances such as being infertile, lesbian or a single mother), are required to have skills such as reflexivity and autonomy in dramatic situations that concern their relationship with their own reproductive body. Given the urgency of this issue at the socio-anthropological level, we are conducting ethnographic research aimed at analysing how specialists and lay people objectivate, evaluate and circulate different conceptions of the human embryo in vitro. Based on our research experience within this ongoing project, we intend to discuss some ethical, practical and methodological concerns for the researcher in accessing the field and conducting fieldwork. We take into account the fact that this research is focused on sensitive topics and on individuals who can be considered people in vulnerable situations. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)
17 pages, 262 KiB  
Article
Multiple Vulnerabilities in Medical Settings: Invisible Suffering of Doctors
by Daria Litvina, Anastasia Novkunskaya and Anna Temkina
Societies 2020, 10(1), 5; https://doi.org/10.3390/soc10010005 - 25 Dec 2019
Cited by 21 | Viewed by 6799
Abstract
While there is a substantive amount of literature on vulnerability of different kinds of patients in different settings, medical professionals are usually considered as the ones who possess power and gain a privileged position. In this paper, we aim to demonstrate that in [...] Read more.
While there is a substantive amount of literature on vulnerability of different kinds of patients in different settings, medical professionals are usually considered as the ones who possess power and gain a privileged position. In this paper, we aim to demonstrate that in a certain context physicians—a social group which is usually referred to as “powerful”—consider themselves vulnerable, and this positioning may influence patients in turn. This perspective highlights the complexity of interactions within medical organizations and contributes to the studies of sensitive topics and vulnerable groups. We conceptualize vulnerability of doctors and discuss what can be problematic in powerful doctors’ position. We describe some features of the post-Soviet context of Russian healthcare system and maternity care, both of which can be conceptualized as a hybrid of legacy of Soviet paternalism and new neoliberal reforms, managerialism and marketization. Empirical research is based on the ethnographic evidence from the study of a Russian perinatal center. In this article, we explore specific “existential” and “moral” vulnerabilities of medical professionals who routinely have to cope with multiple challenges, such as complicated clinical tasks, rigid control of different state bodies and emotional responses of suffering patients. We argue that there is a bond between the vulnerability of doctors and that of patients, whose position becomes more problematic as professionals become more vulnerable. At the end, we discuss methodological and theoretical implications of our research. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)
12 pages, 224 KiB  
Article
Who else Needs Protection? Reflecting on Researcher Vulnerability in Sensitive Research
by Lynette Sikic Micanovic, Stephanie Stelko and Suzana Sakic
Societies 2020, 10(1), 3; https://doi.org/10.3390/soc10010003 - 22 Dec 2019
Cited by 27 | Viewed by 5112
Abstract
Ethnographic research characterised by immersion, reflexivity, and rapport can be unpredictable and uncontrollable, producing a wide range of emotional responses. Much of the literature on sensitive research focuses on ethical requirements and strategies for protecting participants while less attention has been given to [...] Read more.
Ethnographic research characterised by immersion, reflexivity, and rapport can be unpredictable and uncontrollable, producing a wide range of emotional responses. Much of the literature on sensitive research focuses on ethical requirements and strategies for protecting participants while less attention has been given to the need for researcher protection. In this paper, we share some of the concealed and/or overlooked aspects of researcher vulnerability that are commonly disregarded or under-explored. Based on our fieldwork experiences with a vulnerable population, it considers some of the different ways doing sensitive research with people experiencing homelessness has had an impact on our research team and wider. Specifically, we analyze the emotional impact of distressing and painful research experiences on those directly and not directly involved with the collection of research data (i.e., transcribers and coders). The themes that are discussed include: i) blurring of roles in the field; ii) dealing with heart-rending life stories; and iii) handling emotionally charged experiences. By reflecting on our fieldwork experiences and emotions, we also explore the ways in which emotional impacts can be managed in practice. Strategies for emotion management that have helped us deal with the unique challenges of this research are outlined. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)
15 pages, 246 KiB  
Article
Ethics in Categorizing Ethnicity and Disability in Research with Children
by Ingfrid Mattingsdal Thorjussen and Terese Wilhelmsen
Societies 2020, 10(1), 2; https://doi.org/10.3390/soc10010002 - 21 Dec 2019
Cited by 3 | Viewed by 5081
Abstract
The use of categories is a contested subject in social sciences. The use of social categories allows researchers to explore similarities, differences, and inequalities between groups of people. However, by using social categories, researchers run the risk of essentializing differences. The aim of [...] Read more.
The use of categories is a contested subject in social sciences. The use of social categories allows researchers to explore similarities, differences, and inequalities between groups of people. However, by using social categories, researchers run the risk of essentializing differences. The aim of this article is to problematize the procedural and relational ethics of using categories in research with children. Based on two research projects studying inclusion and exclusion in physical education, we examine the ongoing ethical dilemmas of categorizing children in terms of disability and ethnic background. The reflections are grounded in intersectional and relational ethical perspectives with a focus on how power is manifested in practices and structures throughout the research process. The data consist of field notes, transcripts of interviews with children and their parents, and the authors’ reflective accounts. The results are organized into three main themes: (1) How categories frame the research in its initial phases (informed consent and voluntary participation), (2) power relationships in context (navigating meanings of categories in the interviews and the relational ethics of generational ordering in combined interviews with children and their parents), and (3) (re)constructing stories and ensuring anonymity. In the discussion, we reflect on how singling out groups of children framed the research, how categories and power relations were negotiated and navigated in interviews and fieldwork, and how, in the reporting of the results, understandings of the children and their experiences were constructed. We argue that by not reflecting on the ethics of categorizing children in research, researchers are in danger of reproducing rather than challenging social inequality and discrimination. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)
13 pages, 214 KiB  
Article
The Problematics of Assessing Trans Identity in Survey Research: A Modest Proposal for Improving Question Design
by J. Michael Ryan
Societies 2019, 9(4), 85; https://doi.org/10.3390/soc9040085 - 14 Dec 2019
Cited by 5 | Viewed by 3153
Abstract
One of the central issues facing the trans community today is not only to be counted, but also how to be properly counted. If and how trans people are counted has a huge impact on what we know, or what we think we [...] Read more.
One of the central issues facing the trans community today is not only to be counted, but also how to be properly counted. If and how trans people are counted has a huge impact on what we know, or what we think we know, about the trans community. When trans people are not counted, we know nothing, but when trans people are counted incorrectly, the results can be even worse. The question addressed in this paper, therefore, is how to develop a question(s) that will more accurately account for the trans population on national surveys. By drawing on cognitive interviews testing a gender identity and sexual identity question for a national official health survey, an argument is made for an improved method of understanding trans measurement on surveys. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)
14 pages, 261 KiB  
Article
“I Don’t Have the Nerve to Tell These People That I Cannot Help Them!”: Vulnerability, Ethnography, and Good Intentions
by Joana Catela
Societies 2019, 9(4), 84; https://doi.org/10.3390/soc9040084 - 9 Dec 2019
Viewed by 2731
Abstract
The nonprofit organization where this ethnography took place, driven by the maxim ”lending a hand”, was forced to reduce its efforts to what it considered essential, at a time when austerity was beginning to take shape in Portugal. The analysis of the logics [...] Read more.
The nonprofit organization where this ethnography took place, driven by the maxim ”lending a hand”, was forced to reduce its efforts to what it considered essential, at a time when austerity was beginning to take shape in Portugal. The analysis of the logics employed to distribute food to the neediest proved to be critical to the understanding of the consequences of apparent beneficial actions in this context. The concept of ”vulnerable” is, therefore, discussed considering how it was produced by a legal instrument and how it was reproduced by a local institution, what were the consequences for the subjects involved in this research and also for the vulnerable ethnographer. This investigation was based on several months of intense fieldwork where different ethnographic methodologies were employed in order to grasp the complexities of vulnerability and good intentions, such as participants’ observations and semi-directive interviews. Although this paper focuses on the analysis of the distribution of food support during a later visit to the fieldwork site, it is not the purpose of this paper to discuss issues of food shortage, but to contribute to the debate of care in the context of deprivation and precariousness, anchored in an ethnography where these concepts intertwine with real situations. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)
12 pages, 314 KiB  
Article
An Exploration of the Practical and Ethical Issues of Research Using Multi-Visual Methods with Children Affected by Chronic Pain
by Ana Patrícia Hilário and Fábio Rafael Augusto
Societies 2019, 9(4), 81; https://doi.org/10.3390/soc9040081 - 23 Nov 2019
Cited by 5 | Viewed by 3580
Abstract
This paper intends to encourage further reflection on the research methods and approaches used to enhance the voices of children with chronic conditions. Visual methods (e.g., ‘draw, write, and tell’ and photo elicitation interviews) have been described as the most appropriate ways to [...] Read more.
This paper intends to encourage further reflection on the research methods and approaches used to enhance the voices of children with chronic conditions. Visual methods (e.g., ‘draw, write, and tell’ and photo elicitation interviews) have been described as the most appropriate ways to develop research with children as they allow room for children to share their lived experiences in their own terms and to actively participate in the research process, by giving them the opportunity to act as co-researchers. In fact, the use of these methods also contributes to empowering children and mitigating the power differences that exist between the adult researcher and young participants. Drawing on an ongoing study on the experience and management of chronic pain in childhood, this paper provides insights on the usefulness of using these multi-methods to address (potentially) sensitive topics with a (potentially) vulnerable group. The ethical and methodological challenges faced by the researcher when conducting research with ill children in the healthcare context are addressed. The paper looks at the dilemmas of studying chronic pain in childhood and highlights the ways in which multi visual methods can help children in the meaning making of chronic pain. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)
16 pages, 387 KiB  
Article
Customizing Methodological Approaches in Qualitative Research on Vulnerable Children with Autism Spectrum Disorders
by Pernille Skovbo Rasmussen and Anne Katrine Pagsberg
Societies 2019, 9(4), 75; https://doi.org/10.3390/soc9040075 - 7 Nov 2019
Cited by 14 | Viewed by 6551
Abstract
Children with autism spectrum disorders often suffer from poor school inclusion, loneliness, and poor quality of life. Suitable support options for overcoming these risks are lacking, partly because children’s perspectives concerning their support needs are unknown. We need to improve the involvement of [...] Read more.
Children with autism spectrum disorders often suffer from poor school inclusion, loneliness, and poor quality of life. Suitable support options for overcoming these risks are lacking, partly because children’s perspectives concerning their support needs are unknown. We need to improve the involvement of children in social research. However, involving children with autism in research is not always simple, and there is scant literature on qualitative methods for addressing challenges related to involving children with unique characteristics such as autism. Children with autism may lack mimetic expressions to reflect their feelings, and they may answer questions very briefly despite having a nuanced perspective on the issue addressed, thus leaving the researcher with few indicators to act upon. Consequently, it can be difficult for the researcher to “read” the child, assess ethical important moments, and adapt the methodology to the individual child. Based on a qualitative study of 22 children with autism in the capital region of Denmark, this article offers reflections on methodological and practical challenges in involving children with autism in research. Matching expectations between researcher and child, staying open to communication forms, and posing precise questions are shown to be important to have insight into the children’s perspectives. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)
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17 pages, 277 KiB  
Article
The Emotional Risks of Turning Stories into Data: An Exploration of the Experiences of Qualitative Researchers Working on Sensitive Topics
by Sharon Mallon and Iris Elliott
Societies 2019, 9(3), 62; https://doi.org/10.3390/soc9030062 - 30 Aug 2019
Cited by 25 | Viewed by 6503
Abstract
A great deal of research has been undertaken into areas involving sensitive topics. In spite of longstanding acceptance that such research can be emotionally risky for participants, interest in the impact of this work on the researcher has only relatively recently become a [...] Read more.
A great deal of research has been undertaken into areas involving sensitive topics. In spite of longstanding acceptance that such research can be emotionally risky for participants, interest in the impact of this work on the researcher has only relatively recently become a topic of concern. This paper reports on a roundtable convened with qualitative researchers working in sensitive research areas. The article explores their views in relation to the emotional risks they encountered in relation to their work. A grounded theory, thematic analysis was used to analyse the data and comparisons are made between researcher experiences and those highlighted by earlier studies. We illuminate how researchers described personal concerns about the emotional risks, before focusing on how the researcher’s sense of professionalism contributed to, or protected against, these emotional risks and emotions. This paper also discusses the faltering nature of the support provided to these researchers and the challenges created by the need they felt to create impactful research. The authors conclude by arguing that current support and guidance provided to researchers working in sensitive areas fails to address the complexity of the emotional reaction of the researcher. We call for the development of specialised training and improved use of theoretical concepts such as emotion work, to guide those undertaking this challenging work. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)

Other

Jump to: Research

7 pages, 219 KiB  
Concept Paper
Consent for Research on Violence against Children: Dilemmas and Contradictions
by Paula Cristina Martins and Ana Isabel Sani
Societies 2020, 10(1), 15; https://doi.org/10.3390/soc10010015 - 5 Feb 2020
Cited by 11 | Viewed by 3602
Abstract
The increasing visibility of violence involving children has led to a recognition of the need to research its underlying dynamics. As a result, we now have a better understanding of the complexities involved in this kind of research, associated with children’s developmental characteristics [...] Read more.
The increasing visibility of violence involving children has led to a recognition of the need to research its underlying dynamics. As a result, we now have a better understanding of the complexities involved in this kind of research, associated with children’s developmental characteristics and social status, exposure to violence, and compromised parenting of caregivers. This paper discusses the issues raised by parental consent in research on violence against children, specifically the dilemma of children’s rights to participation and protection, and proposes changes in research practice in this domain. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)
13 pages, 242 KiB  
Concept Paper
Reinforcing and Reproducing Stereotypes? Ethical Considerations When Doing Research on Stereotypes and Stereotyped Reasoning
by Mathilde Cecchini
Societies 2019, 9(4), 79; https://doi.org/10.3390/soc9040079 - 20 Nov 2019
Cited by 9 | Viewed by 6980
Abstract
Many social scientists are interested in studying stereotypes and stereotyped reasoning. This interest often comes from a wish to contribute to creating a more just and equal society. However, when we as scholars study stereotypes and stereotyped reasoning, we risk reproducing and maybe [...] Read more.
Many social scientists are interested in studying stereotypes and stereotyped reasoning. This interest often comes from a wish to contribute to creating a more just and equal society. However, when we as scholars study stereotypes and stereotyped reasoning, we risk reproducing and maybe even reinforcing these processes, and thereby harming individuals or groups of individuals. The debates of this ethical issue mainly take the form of general discussions of research ethics and of weighing the aim of the research against potential harm to participants. While these reflections are extremely important, there is a need for discussing how this ethical issue can be handled in practice. The aim of this article is to develop a set of practical guidelines for managing this ethical issue, based on the examination of ethically delicate moments experienced during an ethnographic study of the construction of health and risk identities among seventh-graders in Denmark. Three guiding principles are proposed: Develop an ethical sensibility in order to identify ethically delicate moments; consider ethics as well as methods when constructing and posing questions; more specifically, briefings and debriefings can be used to address ethical issues; and, finally, make participants reflect upon their opinions and answers. Full article
(This article belongs to the Special Issue Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable)
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