Ethical Research Involving Children

But, what is a researcher?: Supporting informed consent with young children. By Laura Benton and Julia Truscott

You can download this case study as a pdf here.

It is now common practice to seek children’s own consent for research participation, alongside (usually) that of a parent or guardian. This is advocated in the ERIC Charter and also represents a commitment to children’s rights, as laid out in the United Nations Convention on the Rights of the Child (1989). Many researchers now use colourful, graphical informed consent forms aimed at children, animated participant information videos, comic strips, stories or playful processes to support children’s understandings of a research project (Arnott et al., 2020; Dockett, Perry & Kearney, 2012; Grootens-Weigers et al., 2015; Knapp et al., 2021; Mayne & Howitt, 2022; Truscott, Graham & Powell, 2019). These sorts of creative materials cannot ensure an ethical informed consent process, but they can be valuable and engaging tools to support conversation with children, assisting them to understand a study and their participation within it (Mayne & Howitt, 2022; Pase, 2019; Rogers & Labadie, 2018; Ruiz-Casares & Thompson, 2016).

Recently, we led some knowledge exchange workshops on child research ethics at University College London (UCL). During these, researchers shared ideas and discussed the on-going challenges surrounding ethical research involving children, including informed consent. One challenge discussed, and something we have noticed in our own educational research projects, is that despite the many efforts and creativity around informed consent, young children are often not familiar with the role of a researcher. In trying to position a researcher within the realms of their experiences, they have sometimes wondered aloud whether we are, “someone’s mum” or “really a teacher?” (Truscott, Graham & Powell, 2019). Inevitably children gain greater understanding of research, of a particular project, and of their participation within it through the experience of taking part. However, when asking young children to make their initial ‘informed’ choice, there is some discomfort in asking them to consent to participate in ‘research’ when they have little knowledge or understanding of what it is. We have increasingly felt that there was an ethical obligation to educate them, in a simple and understandable way, about what ‘research’ actually is, as part of asking them whether they would like to take part in a particular research project. This educational imperative is also enshrined in children’s rights as laid out in the UN Convention on the Rights of the Child (Lundy, McEvoy & Byrne, 2011; Lundy & McEvoy, 2012; Rogers & Labadie, 2018; UN, 1989).

The ethical challenge:
Despite good intentions towards engaging in educational, informed consent processes with children, we have found funding constraints, time and expertise sometimes limit opportunities to develop creative, participant information materials on a project by project basis. Furthermore, having sufficient time for informed consent conversations can be challenging in reality in contexts where children are commonly involved in research, such as schools.

Choices made:
We undertook a pilot project to develop a short, engaging introductory resource to help young children (age approx. 3-7 years) better understand research. Our aim was for it to be relevant across a range of projects and by researchers from many different fields to help them explain to children what they do – to spark conversations and questions around research, ahead of inviting children to make decisions about taking part in a particular research project.

We initially considered developing a book, similar to the ‘First Experience’ type books (Going to the Dentist, Learning to Swim etc.) available for young children. However, in the end we decided to apply similar story-telling principles and illustrative style to the creation of a short video (2-3 mins long). In this way, we could distribute the resource readily to schools and families online, and share it widely and for free with other researchers. (A book format, either as an e-book or otherwise, may still be a possibility in the future).

We began by searching for definitions of research that would be understandable to young children and broad enough to encompass research involving children across different fields and approaches. In doing so, we consulted existing literature and with other researchers experienced in research with young children. We then worked with a small advisory group of children and parents. Drawing on their feedback, we developed a storyline, which went through a number of iterations to ensure the message, ‘What IS a researcher?’, came through in a clear and memorable way. Their feedback also helped us to build from young children’s own life experiences and questions (e.g., surrounding the sorts of jobs adults do, what a question is, what they think researchers might do etc.).

We shared the final video with advisory group participants and also other children who had not previously seen it to check that the tone, style and messages worked well for our target age group (approximately age 3-7 years). The final, illustrated videos (a shorter version and a longer version) incorporate bright colours and attractive graphics of pirates, treasure and a magnifying glass to support children’s engagement and understanding of research. Below are some stills images from the videos.

A selection of the bespoke graphics prepared for the videos by illustrator, Holly Smith.

The videos are freely available to view and use here.

Reflexive questions / considerations:
In addition to questions relating to the storyline and the definition of research, we kept asking ourselves when and how we (and others) might best make use of the video as a part of the initial informed consent process with young children.

After gaining final feedback from children and families, we consulted with a range of researchers who had previous experience working with children to find out how they might use this resource within their own work. These were their suggestions for when to use the video:

And, how to build on the video:

Reflexive questions for you:

Contributed by: Dr Laura Benton (Project Leader), Senior Research Associate, UCL Knowledge Lab, IOE, UCL’s Faculty of Education and Society. E-mail: l.benton@ucl.ac.uk
And, Julia Truscott, The CYRA Service (www.cyraservice.com)

This project was funded by an impact grant (2021-22) from the Department for Culture, Communication and Media – part of IOE, UCL’s Faculty of Education and Society.

References
Dockett, S., Perry, B., & Kearney, E. (2012). Promoting children’s informed assent in research participation. International Journal of Qualitative Studies in Education, 26(7), 802-828.

Grootens-Wiegers, P., de Vries, M. C., van Beusekom, M. M., van Dijck, L., & van den Broek, J. M. (2015). Comic strips help children understand medical research: targeting the informed consent procedure to children’s needs. Patient Education and Counseling, 98(4), 518-524.

Knapp. P., Mandall, N., Hulse, W., Roche, J., Moe-Byrne, T., Martin-Kerry, J., & Sheridan, R. (2021). Evaluating the use of multimedia information when recruiting adolescents to orthodontics research: A randomised controlled trial. Journal of Orthodontics, 48(4), 343-351.

Mayne, F., & Howitt, C. (2022). The Narrative Approach to informed consent: Empowering young children’s rights and meaningful participation. Routledge.

Moore, T. P., McArthur, M., & Noble-Carr, D. (2017). More a marathon than a hurdle: Towards children’s informed consent in a study on safety. Qualitative Research, 18(1), 88-107.

Pase, F. (2019). “You have to sign here:” A hermeneutic reading of young children’s politeness play. In Eckhoff, A. (Ed.). Participatory Research with Young Children part of the Springer Series Educating the Young Child: Advances in Theory and Research, Implications for Practice. (Chapter 3, pp. 39-51) Springer: Switzerland.

Rogers, R., & Labadie, M. (2018). Rereading assent in critical literacy research with young children. Journal of Early Childhood Literacy, 18(3), 396-427.

Ruiz-Casares, M., & Thompson, J. (2016). Obtaining meaningful informed consent: Preliminary results of a study to develop visual informed consent forms with children. Children’s Geographies, 14(1), 35-45.

Truscott, J., Graham, A., & Powell, M.A. (2019). Ethical considerations in participatory research with young children. In Eckhoff, A. (Ed.). Participatory Research with Young Children part of the Springer Series Educating the Young Child: Advances in Theory and Research, Implications for Practice. (Chapter 2, pp. 21-38) Springer: Switzerland.

United Nations. (1989). UN Convention on the Rights of the Child. Geneva: United Nations.