Supporting children to make informed decisions about research participation
It is now standard practice across most disciplines not only to seek consent from parents/carers but to honour children’s rights and dignity by informing them directly about research participation and seeking their own consent to take part. However, providing sufficient, clear and age-appropriate information to allow children to make a suitably informed decision, can be more elusive than current practice might suggest.
Consent forms and information sheets tailored to children and young people have become common practice for over a decade now. They typically include information about research participation in a ‘child-friendly’ way – reduced text volume, clear, simple language, and making use of colour and graphics. Some researchers also make use of multimedia, such as e-books or videos (Mayne & Howitt, 2022; McInroy, 2017; Parsons, Sherwood & Abbott, 2016). Where possible, researchers also aim to provide an opportunity to talk over consent information with children, to answer questions and provide further explanation. Indeed, the informed consent process is often when ethics moves from being a theoretical exercise or administrative task to a relational, reflexive endeavour. This is when a children’s rights-informed approach begins to be negotiated in practice.
While ‘child-friendly’ informed consent forms and associated discussions are helpful, researchers acknowledge that key concepts such as confidentiality (Jackson-Hollis, 2019; Lobato et al., 2021; Moore, McArthur & Noble-Carr, 2018; Ruiz-Casares & Thompson, 2016), are complex and can be challenging for children to fully comprehend. As such, researchers have continued to critically reflect on and problematise the informed consent process.
Here we share some insights and a range of creative ideas prompted by a recent collaborative event organised at the UCL Knowledge Lab at University College London, UK.
What does the informed consent process need to cover?
In alignment with the ERIC guidance, there are a number of concepts common to the majority of research projects, which typically need to be covered in some way in the informed consent process. These might include:
- What actually is research?;
- Concepts of privacy, confidentiality and anonymity;
- That research participation is voluntary;
- That consenting to participate is renegotiable.
In addition, there will be project-specific information such as:
- What is this research about?;
- What would participation involve (methods, duration…)?;
- Are there any benefits or risks related to taking part?;
- Other practical project details (such as dates, location etc.).
The informed consent process does not need to provide children and young people with every detail of, for example, a nation’s data protection laws. It is about providing enough information so that they can make as informed a decision as possible about whether to take part or not. This is underpinned by children’s right to ‘seek, receive and impart information’ (UNCRC Article 13) (Lundy, McEvoy & Byrne, 2011; Lundy & McEvoy, 2012) in addition to UNCRC Article 12 (typically referred to as their ‘Right to Participation’).
Improving the informed consent process: What’s the evidence?
Key to improving the informed consent process is to generate evidence regarding how, and to what extent, children understand key concepts (such as confidentiality, anonymity, voluntariness, participation etc.) and what sorts of approaches can assist this process. There are a number of papers in this vein collated in the ERIC resource library. These explore questions such as:
• To what extent do children understand notions of confidentiality and the voluntary nature of research participation? (see for example, Kumpenen et al., 2012; Jackson-Hollis, 2019; Ruiz-Casares & Thompson, 2016)
• How can we fully know this until children disclose something of concern? (Jackson-Hollis, 2019)
• To what extent do colourful informed consent forms or comic book style information support understanding? And, do children interpret images in the same ways? (Dockett, Perry & Kearney, 2012; Ferrer-Albero & Dìez-Domingo, 2020; Massetti et al., 2018; Grootens-Wiegers et al., 2015)
• What other approaches might be helpful? (Arnott et al., 2020; Kustatcher, 2014; Mayne & Howitt, 2022; O’Lonergan & Forester-Harwood, 2011; Rogers & Labadie, 2018).
• Do we need to coach children in exercising their right to ‘dissent’? (Bourke & Loveridge, 2014; Kumpenen et al., 2012; Jackson-Hollis, 2019)
Informed consent in practice
The event at UCL offered the opportunity to explore some of the above kinds of dilemmas and for researchers to share examples of how they have approached these in their own research.
Laura Benton undertakes design-oriented digital technology research to support children’s learning, including those with diverse learning needs such as autism and dyslexia. She discussed how she has built in additional time (at least a week) between the informed consent process and the commencement of the research to allow children to ask questions and relieve the pressure to decide on the spot. She also highlighted that typical consent forms for children and young people could be improved by asking children to actively opt in or out of the various aspects of the research process. The most recent iteration of her consent forms for children typically include the following options:
Seray Ibrahim undertakes research to improve assistive communication technology for children and young people. Working with children and young people who communicate in ways other than natural speech or who have a cognitive impairment that affects how they understand language can require added creativity and innovation when communicating abstract concepts relating to research. Seray often uses visual strategies such as symbol cards or ‘Talking Mats’ (see image below) to present and discuss concepts and to maintain a record of the conversation. She also uses visual props such as a physical ‘Ideas Box’ to convey information sharing – that the children’s perspectives and input will be collected and taken safely to the university.
Given the communication profiles of her research participants, Seray’s analytical work also often draws upon analysis of body language from video stills. In an effort to maintain participant anonymity, while also providing robust, illustrative data, both for discussion with participants and publication, she creates line drawings from the video stills.
Minna Nygren works with Professor Sara Price to study how young children interact with science-themed exhibits in science museums. This means that informing children and their families about the research and seeking their consent is usually undertaken ‘on the run’, with families making quick decisions during the course of a family outing. While time is of the essence, it is vital that families and children are sufficiently informed about the research and research process. Minna has developed ‘at a glance’ visual representations of the research for children, which she uses as discussion aides.
We also looked at some of the ERIC case studies that explore ethical dilemmas surrounding informed consent and offer innovative approaches:
• In a long-term ethnographic study in a Scottish classroom, Marlies Kustatcher, sought a way to make the on-going and renegotiable nature of research participation tangible for 5-6 year old children. She created magnetised pictures of each child, which were positioned on the teacher’s filing cabinet. On any given day, and throughout the day, children could move their picture onto the relevant drawer to opt in or out of the researcher’s observations.
• Fiona Mayne and Christine Howitt have developed the Narrative Approach to informed consent suitable for supporting the understanding and research participation of very young children. The narrative approach involves the development of a digital ‘informing story’, which includes information about the research and research process usually accompanied by photos of the real people and places involved in the research. The digital stories can be updated throughout the research process with photos and other contributions from the children, supporting their on-going and evolving understandings of research participation and acting as a touchstone for on-going ethical discussions. Mayne and Howitt have developed a case study for ERIC showcasing the approach in practice with 4-year old children.
• Tim Moore highlights the important reality that children and young people’s understanding of concepts such as privacy, confidentiality and anonymity develop throughout the research process – their understandings are likely greater towards the end of a research encounter, when they can reflect on what they actually shared. Consequently, it may be more ethical to revisit these aspects towards the end of the research process. His case study draws on insights from focus groups with children and young people of a range of ages and abilities and across a range of settings who were involved in research on child safety (including abuse). At the end of the focus groups the children reflected on and negotiated what could be shared and with whom (e.g., in anonymous reports, with centre staff to improve practice etc.).
The event concluded with an opportunity for questions and an open discussion around informed consent and associated ethical issues in research involving children. Ahead of the event attendees were invited to share any issues of concern or creative approaches. These were collated onto a Miro Board (see image below). This mapping exercise was valuable not only as a tool to help guide the discussion but in offering insight into recurrent issues of ethical concern and where similar concerns arise with different groups or in different contexts.
Where to next?
On 9th December 2021 we will continue the conversation through a one hour open discussion forum guided by the most prevalent issues collated on the Miro Board. The event is free and open to all, and you are very welcome to register here. Following registration you will have the opportunity to share any of your own dilemmas or ideas, which will be added (anonymised) onto the existing Miro Board.
With many thanks to Dr Laura Benton, Dr Seray Ibrahim and Minna Nygren for their collaborative organisation of the above events, the first of which was funded by a UCL Researcher-Led Initiative Awards Scheme. To view a recording of the first event and for further on associated efforts from the UCL Knowledge Lab see here.
Outside of the above events, we warmly welcome you to share ethical dilemmas and creative ideas or approaches to ethical research involving children, including informed consent, via the ERIC social media channels: Twitter, Instagram and LinkedIn.
Julia Truscott is founder of The CYRA Service (Communicating Childhood and Youth Research for All) and associated with the Centre for Children and Young People at Southern Cross University. She works across a wide range of projects relating to contemporary childhood, children’s rights, wellbeing and ethics. For the past 8 years she has been part of the core team coordinating the ERIC initiative.
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Bourke, R. & Loveridge, J. (2014). Exploring informed consent and dissent through children’s participation in educational research. International Journal of Research & Method in Education, 37(2), 151-165.
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.
Ferrer-Albero, C., & Díez-Domingo, J. (2021). Does a comic style informed assent form improve comprehension for minors participating in clinical trials? Clinical Ethics, 16(1), 37-45.
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.
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