By Laura Benton (UCL)
Back in 2018 after several conversations with colleagues around how we can best inform children about the research we are doing and gain their consent to participate I realised that many of us had struggled with this aspect of our research, but also that along the way we had developed helpful strategies and resources as a result of our experiences working with children. So, I decided to organise an informal workshop within the UCL Knowledge Lab to provide a forum for us to exchange ideas and resources, and also to discuss some of the challenges we faced in undertaking ethical research with children. I found this workshop to be extremely valuable in my thinking and helped to shape my subsequent iRead research studies, for example I built in additional time (at least a week) between the informed consent process and the commencement of the research to allow children time to ask questions and not put pressure to decide on the spot. I also redesigned my resources, for example adding additional checkboxes on my consent forms so children had to actively provide an answer for each question instead of simply checking if they agreed.
However, undertaking ethical research with children is an ongoing process of reflection and refinement of practices, and for me having opportunities to discuss difficulties and solutions with other researchers working with children is a key part of this. Earlier this year I was pointed to the UCL Researcher-Led Initiative awards which provided funding to develop research skills and professional development initiatives for your peers. It seemed like a great opportunity to be able to run a follow-up event which would this time be UCL-wide as well as involve an external speaker with experience in the area. In preparing for funding application I came across Julia Truscott who had set up the CYRA service which provides science communication services within the child and youth field to ensure research has real world impact, including developing resources to inform the children and young people themselves about research. Julia was very happy to be involved with the initiative and agreed to give a keynote talk during the event. I also involved two colleagues from the UCL Knowledge Lab, Minna Nygren and Seray Ibrahim, who had experience working with groups of children, very young children and children with disabilities, who often require us to come up with more creative ways of communicating about the research to ensure it is understandable. We were excited to hear that the funding application had been successful and quickly got going on planning the event. The final aims of our event were:
- To increase awareness and develop an understanding of the importance of seeking consent in research work with children, and what it means for researchers working in different contexts
- To share real life examples of seeking consent with children as well as existing resources, enabling for us to learn from each other’s work
- Identify themes of importance for developing practices for seeking consent in future research with children
- Support creative ideation around practical ways to address challenges in seeking consent
We had 37 researchers sign up for the event, many of which were students or early career staff, from across UCL departments and faculties including:
- Institute of Education
- Division of Psychology and Language Sciences
- School of European Languages, Culture and Society
- Department of Science, Technology, Engineering and Public Policy
- Institute for Global Prosperity
- Department of Computer Science
Prior to the workshop we asked participants to tell us about their background, the type of research they do, the child populations they work with as well as any resources they had developed and particular ethical challenges they have faced. Attendees were working with a range of child populations including primary/secondary students, bereaved children, young people with mental health difficulties, children with SEND, recent immigrant and refugees, children with developmental disorders such as Down Syndrome, William’s Syndrome and ASD, and visually impaired children. We used the online visual collaboration tool Miro to collate all the ideas and challenges from our attendees and combined this with those from our own research.
Our event began with Julia’s keynote which drew on examples from two initiatives, ERIC (Ethical Research Involving Children) which actually originated from an international meeting held at UCL and CYRA (Communicating Childhood & Youth Research for All). She focused on informed consent, what it is, why it is important and also shared some practical examples from a range of research projects. I followed this by providing an overview of the relevant UCL ethics procedures and requirements, and reflected on my own research and how my approach to ethics has evolved over the 4.5 years of iRead. Seray and Minna then had a discussion about their own research with very young children, and children with disabilities, sharing some examples of the resources they had developed to support their understanding and participation in research. We concluded with a Q&A session to discuss specific challenges the attendees had experienced.
Our discussions during the event highlighted a number of key challenges and insights, which we summarise below under four overarching aspects of ethical research with children.
Helping Children Understand about Participation
At the start of our research studies we need to find ways to help children understand what it means to participate in research. One of the challenges raised was how to manage children’s expectations and experiences so that it is a positive, beneficial and empowering experience for them. Particularly given that we are often conducting our research during what would otherwise be children’s learning or social time. It can also be difficult to explain to children about related concepts such as confidentiality and anonymity. We need to ensure children are not pressured to take part in research, either from us as researchers as well as because of the influence of gatekeepers such as teachers. Lastly it can be complex to frame the research for a range of different stakeholders including the ethics committee, gatekeepers as well as the children themselves – with further challenges supporting the understanding of populations such as the parents of minority children who do not speak the same language as the researcher.
We shared some ideas for supporting children’s understanding which included explaining our background and where we are from using visual support systems, for example showing pictures of the university (see below left), and providing time to answer children’s individual questions about who we are and what we do. Also the use of explanatory and accessible videos that explain what it means to do research, what the research topic is and what the researcher will do during his/her visits, and presenting this information well in advance of the research taking place. Further making specific adaptations to information sheets such as presenting it in a more accessible format like a booklet which includes visuals, highlighting the key points that are relevant to the children, or presenting it verbally along with symbol cards. Lastly the option to use props that would support the explanation of abstract concepts, for example the idea of a post box to post ideas into (see below right) and that would be taken away by the researcher to represent the concept of information sharing.
Helping Children Express Themselves
During the research it is important to provide different ways and supports to enable children to express their preferences and concerns. Some of the particular challenges that were highlighted here included what to do when a child wants their name and identify to be revealed – often we are focused on ensuring confidentiality and anonymisation, but sometimes children want to be given recognition for their participation and input. Also, concerns were raised around the length of time that it would be appropriate for a child to be involved with the research.
Some of the strategies we discussed during the event included the use of warm-up games to enable rapport building at the start of the research, and in particular for very young children ensuring there is a familiar adult present in situations which involve a new person such as a researcher. It is important to find appropriate ways to communicate to the child what their role is within the research and what you would like their help with and insights about. We should consider discarding any research methods that may hinder children’s expression, for example methods that overly rely on researcher interpretation, and ensure we pay attention to the individualised ways that children communicate. There are various resources we can use to support children’s expression, particularly for those children that may have particular communication difficulties, such as children’s personal communication systems (Porter, 2007), talking mats (Murphy, 1998), or the use of active consent forms which require children to indicate yes/no to each question (see below).
Monitoring and Renewing Consent
Consent is not a one-off activity, as researchers we should view consent as an ongoing process which we monitor and renew with children on a regular basis. This can be particularly challenging for longer-term research as children’s profiles, abilities and preferences can evolve quickly over time in line with their rapid development and learning. It can also be difficult to identify in advance all the potential emotional and psychological harms the research may present, and again the researcher needs to find ways to continue to consider any potential harms that may emerge as the research progresses to ensure these can be addressed in advance. Further concerns were highlighted around how to best make sure children feel comfortable and empowered to indicate that they need a break, don’t want to answer a question or want to finish a research activity.
We presented some strategies that may be useful to ensure children are happy to continue their participation in research, which included breaking research tasks apart and identifying specific points at which to renew children’s consent, providing different ways/levels to participate and for their data to be captured (e.g. offering written notes as an alternative to recording), looking at/pointing to any recording devices being used and in the early stages observing carefully how the children react to the researcher presence to ensure there are no signs of distress. Furthermore, throughout the research paying attention to the indirect ways children express discomfort or anxiety, looking for shifts in body language, as well as ensuring there are clear ways that children are familiar with to signal for a break or opt out of an activity. It may also be helpful to keep a field note journal to reflect on these and any other evolving ethical issues.
After the Research has Ended
Lastly it is important to think about what will happen after the research has ended, which as researchers we often don’t consider in advance. What and how will we inform children about the impact of their participation? This can be challenging as the typical ways academics share research findings is through talks and publications which are not accessible for children. There is also a need here to be clear what the children have consented to and that the data is not used beyond what has been agreed. Furthermore, there are challenges with other modes of dissemination such as books or films as well as potential media interest in the research findings tapping into the more personal stories within the research which can be difficult to balance to ensure confidentiality is maintained.
Some of the ideas that arose in relation to this aspect included planning and sharing the particular dissemination plans for the research in advance (e.g. a museum exhibition, a radio documentary), ensuring we are available to gatekeepers to answer any follow-up questions after the children’s participation, and being aware/prepared for the child’s right to subsequently access their data. However, we felt that this particular aspect can typically receive the least amount of attention and therefore there is a gap for further ideas and strategies to address this.
Although the iRead project has now ended I hope that I will have opportunities to further build on these insights through follow-up events as well as contributing to the development of resources to provide support and guidance to researchers.
The recording of the event is available to watch online.
Murphy, J. (1998). Helping people with severe communication difficulties to express their views: a low tech tool.Communication Matters Journal, 12(2), 9-11.
Porter, G. (2007) Pragmatic Organisation Dynamic Display (PODD) communication books: Direct access templates. Melbourne: Cerebral Palsy Education Centre.
iread-project.eu 