Video recording as a data collection method in vulnerable populations - methodological and ethical considerations

This chapter focuses on ethical and methodological considerations for conducting health research with diverse and vulnerable populations. We summarize the literature on ethics and research methodology for four groups: (1) racial and ethnic minorities, (2) sexual orientation and gender minorities, (3) prisoners, and (4) individuals with chronic illnesses or limitations. We will address these four groups by addressing the following questions: (1) what are important historical and ethical considerations for research with diverse and vulnerable populations and (2) what are important methodological considerations for research with diverse and vulnerable populations?

Choosing the Best Design in Surgical Research.

Greater inclusion of people living with dementia (PLWD) and their caregivers in research is a global research priority and an expressed priority of dementia advocacy organizations. Absent inclusion of PLWD and caregivers, our understanding of dementia-related experiences and optimization of care and caregiving interventions is stymied. Qualitative interviewing techniques constitutes a primary method for obtaining PLWD and caregivers’ perspectives. Yet, there is little guidance on use of qualitative interviewing techniques among PLWD and caregivers or discussion of potential challenges encountered, despite unique vulnerabilities faced throughout the research process, which may be further heightened among historically excluded groups. Meaningful progress toward inclusion of PLWD and their caregivers in dementia research necessitates broader examination of associated methodological and ethical considerations that arise in the conduct of interviews. Drawing from a large multi-site qualitative study of dementia caregivers with exposure to high levels of social disadvantage, we used a multiple-triangulation qualitative approach across interview transcripts, memos, and interviewer discussions to identify methodological and ethical challenges that arose during the interviewing process. Challenges were identified across all phases of research, and included relational concerns with PLWD and family members due to disclosure of sensitive information, risk of re-traumatization in discussing past experiences, multiple roles of caregivers with conflicting perspectives, variable recall capacity, limited prior appraisal of caregiving, and request of interviewers for medical advice or selecting services . We outline events evidencing these challenges and proposed strategies (i.e. use of research consults, interview debriefing) to strengthen research capacity to anticipate and respond to them.

A few weeks ago, we published an editorial discussion on whether artificial intelligence applications should be authors of academic articles [1] . We were delighted to receive more than one interesting reply letter to this editorial in a short time [2, 3] . We hope that opinions on this

The investigation of medication errors in nursing includes both methodological and ethical considerations because it is a sensitive field of research. To present an original research protocol for the investigation of nurses' experiences of medication errors with interpretative phenomenological analysis and the relevant methodological and ethical considerations. A discursive paper which presents an original research protocol about nurses' experiences of medication errors with interpretative phenomenological analysis followed by a literature review and personal reflections about the relevant methodological and ethical considerations. The review included papers published in English from 1990 to February 2019 on PubMed, BNI (British Nursing Index), CINAHL (Cumulative Index to Allied Health Literature), ScienceDirect, and Wiley Online Library. The following methodological considerations were identified: recruitment of participants, data collection, and data analysis, and the ethical considerations included researcher's morality, ethics committees, sensitivity, phrasing of sentences and words, recruitment of participants, location of interviews, type of interviews, emotionality management, medication error incidents' management, researcher, or nurse? By facing as many as possible methodological and ethical considerations and establishing solutions for them, the study's validity, reliability, and rigor are enhanced, and the study is ethically robust. Finally, their understanding enables researchers to uncover nurses' experiences and interpret the meanings they generate in depth.

Qualitative research is integral to the pandemic response. Qualitative methods are ideally suited to generating evidence to inform tailored, culturally appropriate approaches to COVID-19, and to meaningfully engaging diverse individuals and communities in response to the pandemic. In this paper, we discuss core ethical and methodological considerations in the design and implementation of qualitative research in the COVID-19 era, and in pivoting to virtual methods—online interviews and focus groups; internet-based archival research and netnography, including social media; participatory video methods, including photo elicitation and digital storytelling; collaborative autoethnography; and community-based participatory research. We identify, describe, and critically evaluate measures to address core ethical challenges around informed consent, privacy and confidentiality, compensation, online access to research participation, and access to resources during a pandemic. Online methods need not be considered unilaterally riskier than in-person data collection; however, they are clearly not the same as in-person engagement and require thoughtful, reflexive, and deliberative approaches in order to identify and mitigate potential and dynamically evolving risks. Ensuring the ethical conduct of research with marginalized and vulnerable populations is foundational to building evidence and developing culturally competent and structurally informed approaches to promote equity, health, and well-being during and after the pandemic. Our analysis offers methodological, ethical, and practical guidance in the COVID-19 pandemic and considerations for research conducted amid future pandemics and emergency situations.

ABSTRACTCYP fall within the range of groups classified as vulnerable. The aligning of vulnerable with notions of incompetence, risk of harm and poor skills and abilities elicits a heightening of tensions surrounding perception of risk to CYP regarding their involvement in research. This paper explores the factors related to ethical principles and methodological choices that must be balanced by researchers throughout the research process for research involving CYP and other vulnerable participants. The decision-making processes in relation to ethical and methodological considerations throughout the design and implementation of the research are likened within this article to balancing a seesaw. A framework, containing prompts and questions, to support reflexive ethical decision-making is proposed to support researchers with balancing the seesaw to protect CYP and to facilitate opportunities for them to articulate their views and experiences. This paper contributes to the debates surrounding the involvement of CYP in research and adds support to greater weighting towards ethics, upon the pivot of the seesaw of decision making in research design.

Ethical Considerations in Qualitative Research with Children's Participation

Resumo Compromissos éticos em estudos envolvendo seres humanos têm sido considerados há poucas décadas. No entanto, preocupações a que comumente se restringem os pesquisadores são entendidas como típicas de ética denominada formal (e.g. anonimato, consentimento informado e ausência de fraudes). Neste artigo, enquanto defendemos que esse tipo de ética, também denominada burocrática, precisa ser superada, compartilhamos e ilustramos um exemplo materializado de ética defendida na pesquisa em humanas, nomeadamente, ética emancipatória. Esse exemplo é fornecido pela tese doutoral da primeira autora, sob orientação da segunda, e apresentado com considerações de ordens epistemológicas, ontológicas, metodológicas e éticas do início do processo investigativo ao seu final. Princípios da pesquisa emancipatória (CAMERON et al ., 1992), do cuidado com o outro (NODDINGS, 1984) e, ainda, considerações éticas e metodológicas de Denzin (1997) e Christians (2006) para pesquisas sociais e humanas fundamentam este texto. Em suma, este artigo visa demonstrar formas de distribuição de poder e incorporação das vozes dos participantes em prática de pesquisa.

This article explores how the concept of vulnerability in procedural ethics may influence knowledge production in qualitative research. We suggest that the ethical and methodological precautions taken towards ‘vulnerable populations’ may be detrimental to research participants, as their voices might be silenced, or their interpretations might be excluded from the research. To address this issue, we put the concept of vulnerability in research ethics into dialogue with the normative framework of epistemic injustice as developed by Miranda Fricker. In doing so, we discuss how epistemic injustices may occur, but also how they may be resisted through ethical and methodological considerations based on a more critical understanding of vulnerability. We start this article by tracing and problematizing the often-used understanding of vulnerability as rooted in the biomedical field. We then discuss the skepticism of social scientists regarding the idea of vulnerability, before presenting its reconceptualization from critical and feminist scholars. Finally, we show how using vulnerability in research ethics can lead to either the maintaining or resisting of dynamics of epistemic injustice in qualitative research. To illustrate this proposition, we use examples from qualitative field research and discuss our research process in relation to participants.

Purpose This brief report contributes to the small research corpus that focuses on methodological and ethical considerations when adolescents and young people are involved in qualitative research, especially when they have lived experiences of interparental violence. These considerations will be illustrated by an ongoing research project, which examines the active role of adolescent girls and young women and their involvement in processes of intergenerational transmission of violence, agency, and gender. Methods A reconstructive biographical approach using the biographical-narrative interview as the data collection method (Qualitative research practice, 2004) was chosen because it effectively addresses ethical challenges, such as power imbalances and concerns about vulnerability. Results Ethical considerations are of great importance when young people are involved in qualitative research, especially when they might still live in families with IPV. This requires specific attention, particularly concerning informed consent, recruitment, confidentiality, and follow-up support. Conclusion A consequent differentiation between children and youth regarding ethical and methodological aspects in IPV research can lead to a nuanced ethical research practice.

Randomised controlled trials (RCTs) have become a popular methodological choice for policy analysis in the developing world. This paper describes the various ethical and methodological considerations when choosing to adopt RCTs for policy decisions through a review of literature in multiple disciplines. Unlike previous critical analysis of RCTs, this paper contextualises its critique to India, a country that has been the site of well over a hundred RCTs. Through illustrations of recent Indian policy RCTs on corruption, livelihoods, Public Distribution System, conflict and others, the paper raises concern about violations of ethical requirements like equipoise, informed consent, data harms, human costs to research participants and research staff. The paper discusses methodological limitations of RCTs for Indian policy making including heterogeneity, researcher effects, generalisability, policy-relevant unobserved mechanisms and other socio-political considerations. The paper ends with a description of alternative approaches and a simple checklist for practitioners, specifically policy makers, to assess the feasibility of RCTs for informing decision making in their context.

BackgroundSubstance use–related communication for drug use promotion and its prevention is widely prevalent on social media. Social media big data involve naturally occurring communication phenomena that are observable through social media platforms, which can be used in computational or scalable solutions to generate data-driven inferences. Despite the promising potential to utilize social media big data to monitor and treat substance use problems, the characteristics, mechanisms, and outcomes of substance use–related communications on social media are largely unknown. Understanding these aspects can help researchers effectively leverage social media big data and platforms for observation and health communication outreach for people with substance use problems.ObjectiveThe objective of this critical review was to determine how social media big data can be used to understand communication and behavioral patterns of problematic use of prescription drugs. We elaborate on theoretical applications, ethical challenges and methodological considerations when using social media big data for research on drug abuse and addiction. Based on a critical review process, we propose a typology with key initiatives to address the knowledge gap in the use of social media for research on prescription drug abuse and addiction.MethodsFirst, we provided a narrative summary of the literature on drug use–related communication on social media. We also examined ethical considerations in the research processes of (1) social media big data mining, (2) subgroup or follow-up investigation, and (3) dissemination of social media data-driven findings. To develop a critical review-based typology, we searched the PubMed database and the entire e-collection theme of “infodemiology and infoveillance” in the Journal of Medical Internet Research / JMIR Publications. Studies that met our inclusion criteria (eg, use of social media data concerning non-medical use of prescription drugs, data informatics-driven findings) were reviewed for knowledge synthesis. User characteristics, communication characteristics, mechanisms and predictors of such communications, and the psychological and behavioral outcomes of social media use for problematic drug use–related communications are the dimensions of our typology. In addition to ethical practices and considerations, we also reviewed the methodological and computational approaches used in each study to develop our typology.ResultsWe developed a typology to better understand non-medical, problematic use of prescription drugs through the lens of social media big data. Highly relevant studies that met our inclusion criteria were reviewed for knowledge synthesis. The characteristics of users who shared problematic substance use–related communications on social media were reported by general group terms, such as adolescents, Twitter users, and Instagram users. All reviewed studies examined the communication characteristics, such as linguistic properties, and social networks of problematic drug use–related communications on social media. The mechanisms and predictors of such social media communications were not directly examined or empirically identified in the reviewed studies. The psychological or behavioral consequence (eg, increased behavioral intention for mimicking risky health behaviors) of engaging with and being exposed to social media communications regarding problematic drug use was another area of research that has been understudied.ConclusionsWe offer theoretical applications, ethical considerations, and empirical evidence within the scope of social media communication and prescription drug abuse and addiction. Our critical review suggests that social media big data can be a tremendous resource to understand, monitor and intervene on drug abuse and addiction problems.

This review of the literature synthesizes methodological recommendations for the use of translators and interpreters in cross-language qualitative research. Cross-language qualitative research involves the use of interpreters and translators to mediate a language barrier between researchers and participants. Qualitative nurse researchers successfully address language barriers between themselves and their participants when they systematically plan for how they will use interpreters and translators throughout the research process. Experienced qualitative researchers recognize that translators can generate qualitative data through translation processes and by participating in data analysis. Failure to address language barriers and the methodological challenges they present threatens the credibility, transferability, dependability and confirmability of cross-language qualitative nursing research. Through a synthesis of the cross-language qualitative methods literature, this article reviews the basics of language competence, translator and interpreter qualifications, and roles for each kind of qualitative research approach. Methodological and ethical considerations are also provided. By systematically addressing the methodological challenges cross-language research presents, nurse researchers can produce better evidence for nursing practice and policy making when working across different language groups. Findings from qualitative studies will also accurately represent the experiences of the participants without concern that the meaning was lost in translation.

Two years ago, I began a project based on the question, “If online platforms are providing more access for hate groups to recruit and radicalize members, then is it possible to use online platforms to combat discrimination, racism, and hatred?” Educating public audiences and promoting positive social change were laudable goals, but this article explores the idea of how this was done in ethical ways. There were challenges encountered “along the way” when attempting to create a project from personal stories, including issues of ethical storytelling, respectful data management, community engagement with marginalized communities, complications of “going viral,” and more. In this article, I document the process of how four anti-racist videos were created, some of the challenges encountered along the way, methodological maneuvers, and suggestions for further methodological and ethical consideration. I explore two levels of analysis. First, by looking at methodological considerations, I detail the importance of community consultation, the need for research findings to be accessible, useful, and meaningful to the community, and how the decisions and planning around “going viral,” were further complicated by funder requirements and other ethical considerations. At the second level of analysis, I use autoethnography to explore how my own positionality factored into decisions about the project.