In the first quarter of 2021 we explored design steps, starting with a January focus on research questions. We continued to learn about the design stage in February by focusing on Choosing Methodology and Methods. The focus for March is on Designing an Ethical Study.
Let’s look at issues and recommendations for ethical practices for research with children.
This excerpt from the SAGE Research Methods Foundations (Moore, 2019) introduces five steps that may help researchers consider how to embed informed consent in research activities as well as examples to show how researchers can assist children to understand, indicate, utilize, and reflect on their consent.
Steps for Embedding Informed Consent Into Research Practices
Informed consent is crucial when conducting research with any group of participants. It requires potential participants to understand what they are being asked to do, the capacity for them to make an informed decision about whether they are willing to participate or not, and a formal mechanism (or series of mechanisms) for them to indicate that they agree to participate under the conditions presented (Cocks, 2006). Rather than see consent as being a one-off exercise, there has been an argument that consent needs to be considered an ongoing process whereby participants are given multiple formal and informal opportunities to decide whether they are still happy to continue, and choices to withdraw when they are not (Moore et al., 2018; Rooney, 2015; Warin, 2011).
Although researchers often consider the consent process as being rather straightforward, it may not be as simple as once thought—particularly when participants are children or young people. In children’s research, researchers may need to spend additional time considering whether particular children and young people have the capacity to consent and, if not, the ways children and young people might be better informed about the study; the extent to which they understand potential risks, benefits, choices, and limitations; their ability to make free choices within the research context; and how to best facilitate their formal agreement. Rather than exclude children and young people from studies, researchers should reflect on how practices and processes can better meet their needs.
Regardless of whether parental consent is required, there is an expectation that children and young people enter research fully informed and voluntarily and that researchers afford them opportunities to opt in or opt out of research even when parental consent has been granted. Several steps can used by researchers, even if they are not required to seek formal informed consent from children but wish to demonstrate their respect for children’s autonomy and their right to choose even if this is not a formal requirement. The steps are:
(1) providing understandable and adequate information;
(2) ensuring that information is comprehended;
(3) formally indicating consent;
(4) offering openings for disengagement or withdrawing consent; and
(5) seeking an agreement at the end of the research activity.
Moore, T. (2019). Informed Consent From Children. In P. Atkinson, S. Delamont, A. Cernat, J.W. Sakshaug, & R.A. Williams (Eds.), SAGE Research Methods Foundations. https://www.doi.org/10.4135/9781526421036878708
Open-Access Articles and Library Resources about Ethics and Research with Children
This curated list of open-access articles offers a mix of disciplinary, methodological, and global perspectives about consent and ethical research with children. If you would like to learn more about research with children, see this SAGE Research Methods Reading List for books, chapters, videos and cases. If you don’t have access to a library with this subscription, you can use this free trial option.
Adler, K., Salanterä, S., & Zumstein-Shaha, M. (2019). Focus Group Interviews in Child, Youth, and Parent Research: An Integrative Literature Review. International Journal of Qualitative Methods. https://doi.org/10.1177/1609406919887274
Abstract. Focus groups are becoming increasingly popular in research, especially in parent and child research. Focus group interviews allow participants to tell their own stories, express their opinions, and even draw pictures without having to adhere to a strict sequence of questions. This method is very suitable for collecting data from children, youths, and parents. However, focus group interviews must be carefully planned and conducted. The literature on focus group interviews with adult participants is extensive, but there are no current summaries of the most important issues to consider when conducting focus group interviews with children, youths, or parents. This article outlines the use of focus groups in child, youth, and parent research and the important factors to be considered when planning, conducting, and analyzing focus groups with children, youths, or parents.
Atkinson, C. (2019). Ethical complexities in participatory childhood research: Rethinking the ‘least adult role.’ Childhood, 26(2), 186–201. https://doi.org/10.1177/0907568219829525
Abstract. This article draws on data from a comparative ethnography of two UK primary schools to explore the complexities inherent in Mandell’s ‘least adult role’. In the interest of gaining insight into children’s informal productions of sexuality and gender, this role was used to gain access to peer group cultures and diffuse the imbalance of power between researcher and researched. However, while found to be productive in a number of ways, ‘least adulthood’ was revealed as a positionality suffused with practical, ethical and emotional complexities, and characterised by a fundamental misconstruction of the workings of ‘power’. In line with recent critiques that have recognised both ‘power’ and ‘agency’ as largely under-theorised in childhood research, I conclude this article by offering a tentative alternative to least adulthood, which attempts to respond to some of the key methodological and ethical challenges in contemporary childhood ethnography.
Furey, R., Kay, J., Barley, R., Cripps, C., Shipton, L., & Steill, B. (2010). Developing Ethical Guidelines for Safeguarding Children during Social Research. Research Ethics, 6(4), 120–127. https://doi.org/10.1177/174701611000600403
Abstract. A working party of academics from both professional safeguarding backgrounds and research backgrounds developed and wrote ethical guidelines on safeguarding children in research on behalf of their faculty research ethics committee. The working party encountered a lack of useful precedents while developing the guidelines leading to a lengthy process of debate and consideration of the issues. This paper explores the various issues and dilemmas arising during this process, particularly the tension between safeguarding children from abuse and maintaining research confidentiality. One of the main areas of discussion was how to establish the limits of confidentiality without compromising the research in hand.
The paper reflects the process of considering these issues and the conclusions the working party drew as to how best to support children’s welfare during research. It also outlines the key elements of the guidelines and the structures developed to ensure researchers could get advice if suspected child abuse became an issue in their research.
The paper includes a short version of the guidelines which were eventually approved across the Higher Education Institute.
Lamb, K., Humphreys, C., & Hegarty, K. (2020). Research ethics in practice: challenges of using digital technology to embed the voices of children and young people within programs for fathers who use domestic violence. Research Ethics. https://doi.org/10.1177/1747016120936324
Abstract. There has been growing enthusiasm amongst those who undertake research with children, for the development of participatory and visual research methods. The greater availability and affordability of digital technology (such as digital cameras, tablets and smart phones) has meant that there has been greater scope for digital technology to support participatory research methods, or augment more traditional qualitative research methods.
While digital technology provides new opportunities for qualitative researchers, they also come with a series of challenges – some of which have been grappled with by those using more traditional research methods but also some which are new. Our study was undertaken in Victoria, Australia, and used a combination of interviews, focus groups and digital storytelling to bring together two strands of work which have historically occurred separately: work with children experiencing domestic violence and programs for men who use domestic violence. While digital storytelling proved to be an effective method of engaging children and young people in the research, a range of challenging ethical issues emerged. Some of these issues were considered as part of the formal ‘procedural ethics’ process, but additional and more challenging issues relating to anonymity and the complex safety considerations of using of the children’s digital stories within programs for men who use violence and dissemination emerged in practice. It is hoped that sharing our experiences and decision-making will contribute to the knowledge base for others considering engaging in sensitive research using digital technology.
Meloni, F., Vanthuyne, K., & Rousseau, C. (2015). Towards a relational ethics: Rethinking ethics, agency and dependency in research with children and youth. Anthropological Theory, 15(1), 106–123. https://doi.org/10.1177/1463499614565945
Abstract. While anthropologists have reflected on ethics and power since the late 1960s, the specific dilemmas that arise in research conducted with children and youth have scarcely been addressed. Nevertheless, critical anthropology’s reflections on power relations and reflexivity can valuably contribute to the interdisciplinary debate in the field of childhood studies, by complexifying categories of voice, dependency and agency, which are often taken for granted in the ethical conversation. Drawing on ethnographic fieldwork with undocumented youth in Montreal, this article argues for the importance of a critical understanding of childhood within a wider context of interdependence, and consequently, for a redefinition of ethics as a reflexive and relational space of intersubjectivity.
Montreuil, M., Bogossian, A., Laberge-Perrault, E., & Racine, E. (2021). A Review of Approaches, Strategies and Ethical Considerations in Participatory Research With Children. International Journal of Qualitative Methods. https://doi.org/10.1177/1609406920987962
Abstract. Participatory research can change the view of children from research subjects to active partners. As active partners, children can be recognized as agents who can contribute to different steps of the research process. However, “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. As such, it raises particular challenges for researchers. Based on a pragmatic ethics approach, we were inspired by the realist review methodology to synthesize the current literature, identify different strategies used to engage children aged 12 and below in participatory research, and analyze how they affect children’s active participation and the ethical aspects related to each. Fifty-seven articles were retained for inclusion in the review. A variety of strategies were used to involve children in the research process, including discussion groups, training/capacity-building sessions, photography and filming, children as data collectors and questionnaires. The most prevalent ethical considerations identified were related to power dynamics and strategies to facilitate children’s expression and foster the authenticity of children’s voices. Researchers should address these ethical considerations to actively involve children within the research process and prevent tokenistic participation. Active inclusion of children in research could include co-identifying with them how they want to be involved in knowledge production (if they want to) from the beginning of a project.
Moore, T., McArthur, M., & Noble-Carr, D. (2008). Little Voices and Big Ideas: Lessons Learned from Children about Research. International Journal of Qualitative Methods, 77–91. https://doi.org/10.1177/160940690800700205
Abstract. Over the past three decades social researchers have increasingly engaged children in projects that explore their experiences, views, and understandings. In this paper the authors share the observations of children involved in a project exploring family homelessness, particularly about what they think is important when conducting research with children and ways in which their views were implemented in the design and delivery of the project.
Morrow, V. (2013). Practical Ethics in Social Research with Children and Families in Young Lives: A Longitudinal Study of Childhood Poverty in Ethiopia, Andhra Pradesh (India), Peru and Vietnam. Methodological Innovations Online, 8(2), 21–35. https://doi.org/10.4256/mio.2013.011
Abstract. A great deal of attention is now paid to the ethics of social research. Research governance has expanded, and a burgeoning literature describes the processes, practices and questions that arise in social research with children, families and communities. This paper outlines the approach taken to research ethics within Young Lives, a longitudinal study of
childhood poverty in Ethiopia, Andhra Pradesh (India), Peru and Vietnam, co-ordinated by a research team based in the UK. Drawing on fieldwork reports, qualitative data and other material, I offer some ‘real life’ examples of ethics questions encountered in research, providing insights into the experiences of fieldworkers. The paper emphasises the importance of understanding local contexts in undertaking research with children and families in environments that change rapidly, economically, environmentally and politically. Overall, my aim is to contribute to current debates about research practice.
Nicholas, D. B., Lach, L., King, G., Scott, M., Boydell, K., Sawatzky, B. J., Reisman, J., Schippel, E., & Young, N. L. (2010). Contrasting Internet and Face-to-Face Focus Groups for Children with Chronic Health Conditions: Outcomes and Participant Experiences. International Journal of Qualitative Methods, 105–121. https://doi.org/10.1177/160940691000900102
Abstract. In this study the authors examined Internet-mediated qualitative data collection methods among a sample of children with chronic health conditions. Specifically, focus groups via Internet technology were contrasted to traditional face-to-face focus groups. Internet focus groups consisted of asynchronous text-based chat rooms lasting a total of one week in duration. Participants comprised 23 children with cerebral palsy, spina bifida, or cystic fibrosis, who were assigned to either an Internet or face-to-face focus group. Focus group analysis and follow-up participant interviews identified a range of content outcomes and processes as well as participant experiences and preferences. Findings yielded differences in terms of the volume and nature of online and face-to-face data, and participants’ affinity to focus group modality appeared to reflect differences in participant expectations for social engagement and interaction. This study identifies both benefits and limitations of asynchronous, text-based online focus groups. Implications and recommendations are discussed.
Ritterbusch, A. E., Boothby, N., Mugumya, F., Wanican, J., Bangirana, C., Nyende, N., Ampumuza, D., Apota, J., Mbabazi, C., Nabukenya, C., Kayongo, A., Ssembatya, F., & Meyer, S. R. (2020). Pushing the Limits of Child Participation in Research: Reflections from a Youth-Driven Participatory Action Research (YPAR) Initiative in Uganda. International Journal of Qualitative Methods. https://doi.org/10.1177/1609406920958962
Abstract. Violence against children (VAC) in Uganda is recognized as an urgent dilemma; however, most research has been quantitatively oriented and has seldom involved children in the research process.
We discuss what we learned about child participation in the research process as a means of informing ethical praxis in future child- and youth-led research initiatives. As an overarching aim of this paper, we utilize our engagement with YPAR as a springboard to reflect on methodological best practices for VAC research that involve children themselves as part of a movement to democratize the research process.
Abstract. Child co-research has become popular in social research involving children. This is attributed to the emphasis on children’s rights and is seen as a way to promote children’s agency and voice. It is a way of putting into practice the philosophy, common amongst childhood researchers, that children are experts on childhood. In this article, we discuss ethical complexities of involving children as co-researchers, beginning with an analysis of the literature, then drawing on data from interviews with researchers who conduct child co-research. We identify six ethical complexities, some of which are new findings which have not been mentioned before in this context. In light of these possible ethical complexities, a key finding is for researchers to be reflexive – to reflect on how the research may affect child co-researchers and participants before the research starts. A separate overriding message that came out in responses from the researchers we interviewed was the need for support and training for child co-researchers. We conclude by providing a list of questions for reflexive researchers to ask of themselves when they use child co-research methodology. We also provide important questions for human research ethics committees to ask when they review projects using child co-research.