It’s up to you if you want to take part. Supporting young children’s informed choice about research participation with simple visual booklets

ABSTRACT

Formal consent for children’s research participation legally resides with adults, and guidelines typically recommend consulting children about their participation only from 7 years of age. How can researchers support younger children’s informed decision-making about their research participation, particularly in larger-scale studies without extended researcher-participant engagement? In this paper, we share our experience of four studies (270 children) using drawings, observations, interviews, and biological and anthropometric measures and the visual information booklets we devised to support young children’s informed agreement. Critically evaluating the notion that ‘evolving capacities’ necessarily increase with age, we consider young children’s contextualised decision-making capacity. Reflecting on process and outcomes, we conclude that simple visual information booklets benefit not only children but all actors in the research process, functioning as material artefacts that remind adults as well as children of young children’s right to choice about research participation.

KEYWORDS:

• Assent
• consent
• young children
• illustrated booklets
• evolving capacities
• rights

Introduction

The four-year-old boy who had come to sit with me in the classroom listened thoughtfully as I read the illustrated booklet about our research project. Turning each page to an image of the activities involved, I read the description out loud, and to each, he replied “hmmmm yes”. But on the final page, as I explained the key principle of consent: “It’s up to you if you want to take part” he said: “Well I’d like to play now, how about you come back to us another day”.

The above encounter illustrates our approach to young children’s informed decisions about their research participation. Some of our work involves large-scale studies that require multiple researchers to work at pace, to a strict schedule of data collection, often interviewing many children in each site visit and negotiating parameters and expectations with many different gatekeepers and stakeholders. Under these conditions, it is easy for information about a study and decisions about participation to remain with adults. Indeed, even in settings with inclusive practices, formal informed consent processes are rarely extended to young children. There appears to be little shared understanding about what children can understand when – and thus when and how their informed agreement can legitimately be obtained.

Foregrounding children’s agency together with their development, we aim to provide an appropriate, meaningful level of information, to be flexible to children’s preferences and to respect their decisions. We use low-cost, easily produced simple illustrated information booklets for young children, designed specifically for each project. Initially conceived of as a communicative aid with which parents would explain research to children, we have found these booklets play further roles in the research process, as material artefacts that remind all actors (children, parents, gatekeepers, carers and teachers) of children’s right to be informed and make their own decision about participation. In this paper, we describe the principles and process of this approach. We also consider how literacy research informs the booklets’ design. Overall, we ground our reflections in considerations of the United Nations Convention on the Rights of the Child (UNCRC; United Nations 1989) framing of children’s evolving participation rights and argue for competence as a contextual rather than purely developmental characteristic.

Participation, assent and consent: theory, guidance and practice

Article 12 of the UNCRC (United Nations 1989) articulates children’s right to express their views and to have these taken seriously in all matters affecting them. However, the Convention specifies children’s ‘age and level of maturity’ should influence the weight given to their views, leaving open the conclusion that older children’s views are to be taken more seriously. Furthermore, children’s ‘evolving capacities’, are a foundational value of the UNCRC (Tobin and Varadan 2019); the United Nations Committee on the Rights of the Child (2005) refers to ‘processes of maturation and learning whereby children progressively acquire knowledge, competencies and understanding’ (CRC GC7 (n25) para 3; see Tobin and Varadan 2019, 173). This classical linear cognitive developmental approach infused in the UNCRC tends to lead to assumptions that children’s ability to understand and make decisions is necessarily age-based, and therefore that younger children simply do not have this capacity. This is a widespread social construction that limits opportunities offered to children to make these decisions. Further challenges that we have observed are assumptions in education and care settings that adult authority must shape children’s actions, and perceptions among researchers that practical implementation of such an information-consent process is difficult.

The UNCRC’s use of ‘evolving’ capacities understanding of incremental cognitive ability situates capacity solely within a child rather than factoring in social and contextual relations. This risks two things: first, underestimating younger children’s ability to form and express views and second, assuming that as children become older and gain cognitive capacity, they necessarily become more able to integrate and act on this information. As a result, children’s participation rights can be constrained not only where adults have limited awareness of the rights conferred by Article 12 UNCRC, but also where adults apply linear interpretations of children’s capacity.

As Laura Lundy (2007) argues, it must be remembered that children’s participation (i.e. having their views heard and taken seriously), is not the ‘gift of adults but a legal imperative which is the right of the child’ (931). Rather than making age-based assumptions about young children’s ‘capacity’ to be informed and express their views about research participation, we argue that the UNCRC mandates researchers to devise meaningful opportunities so children can make such informed decisions. Yet it remains the case that adults hold the legal right to make decisions about children’s research participation. ‘Consent’ is adults’ purview and there is no legal basis to ensuring children are informed.

Establishing young children’s informed consent to participate (Hughes and Helling 1991; Mayne, Howitt, and Rennie 2016) is generally framed as assent (see e.g. Conroy and Harcourt 2009; David, Edwards, and Alldred 2001; Lundy, McEvoy, and Byrne 2011; Twycross, Gibson, and Coad 2008): e.g. the child’s ‘affirmative agreement to participate in research’ (Modi et al. 2014), applied when children are considered to be without capacity to make independent decisions constituting informed consent about research participation (Nuffield Council on Bioethics 2015).

Assent is widely used in international declarations, guidance, and regulations on research ethics, but there is considerable variation in its meaning and implications for involvement in decision making. The Society for Research in Child Development (2007) suggests assent means agreement to participate without necessarily reaching the bar of comprehension required for informed consent. Others argue assent is better positioned as the process of involving children in decision making about research participation (Sibley et al. 2016). The Nuffield Council on Bioethics (2015) strongly endorse these ideas of involvement and process, highlighting that researchers have an ethical imperative to involve children ‘as much as they wish and are able, in decisions about participation’ (148).

Informed agreement: consent and assent

Underlying all consent and some assent processes is the requirement that information has been provided and understood, so a participant can assimilate it, and communicate their decision (Cocks 2006). Yet there is little agreement across researchers and disciplines about when children are able to do this (Ford, Sankey, and Crisp 2007). Involving children in decision making about research participation varies (Mangochi et al. 2019) with cultural, legal and social constructions of childhood. These constructions are often curiously at odds between research expectations and other domains such as criminal, work and family responsibility – even within any given country. A stark example is the UK where children are subject to criminal responsibility at ten years of age in England and Wales and eight years in Scotland – yet do not have legal capacity to decide on research participation. In other countries, children considered too young to make decisions about research participation are expected to undertake considerable caring or work responsibilities (Nuffield Council on Bioethics 2015). Complex factors that pertain in areas of poverty, lower- and middle-income countries, and humanitarian settings are often overlooked. These include children’s and families’ education and literacy, familiarity with research, social hierarchies, and family forms such as child headed households or families that have experienced displacement, separation or loss (Berman et al. 2016; Mangochi et al. 2019). As well as national variation (Gill 2004) ontological, theoretical and practical stances vary substantially by discipline e.g. childhood studies, education, paediatrics and child health, psychology, psychiatry, geography, nursing, paediatrics (see Coyne 2010) and there is little consensus on best practice.

Across all these spaces the underlying justification for assent is often not clear, leading to confusion and variation (Sibley et al. 2016). Decisions are often left with research ethics committees/institutional review boards (REC/IRBs) and researchers themselves.

Age and understanding: thinking about capacity and context

Even in the assent process, younger children tend to be overlooked. A threshold of 7 years has been applied for seeking informed assent, by, for example, the American Academy of Pediatrics, the National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research and The Royal College of Paediatrics and Child Health (see Katz et al. 2016; Modi et al. 2014). The very frequent reference to the age of 7 years in assent guidelines across countries likely has its roots in Piagetian cognitive development theory, which finds that the ‘concrete operational’ stage confers the capacity for logical reasoning (Inhelder and Piaget 1958).

However, an exclusive focus on logical reasoning ignores the role of other capacities, and that of the context in which assent is being sought. Empirical research has demonstrated that well before 7 years of age, children already have the capacity to make choices, express feelings and preferences, to understand their environments, and their own emotional states and motives (Goodvin et al. 2008; Lansdown 2010). Given that research still often overlooks young children’s perspectives, even on topics addressing their everyday lives (O’Farrelly et al. 2020; O’Farrelly and Hennessy 2014), it seems likely that children’s competencies also continue to be underestimated. Researchers may benefit from tools to support young children’s decision making and participation in research about their lives – and from greater competence in implementing them.

A further consideration is young children’s capacity for altruism. This is rarely addressed in discourse on ‘child-centred’ research – perhaps because of concerns about raising this factor amid the undeniable power differentials between children and adults. It has in fact been argued that children younger than 10 years of age do not have the capacity for altruism and hence cannot even assent to research (Wendler and Shah 2003), as if they help others, they do so in hope of a reward, to comply with adults, or because they feel bound by unwritten social rules. Yet empathy is observed in children as young as two years and it increases through childhood (Eisenberg 2000) – providing the foundation for making altruistic choices from the preschool years, as altruism research posits that helping behaviours are prompted by empathy, ‘an other-oriented emotional response elicited by and congruent with the perceived welfare of someone else’ (Batson et al. 2002, 486; see Nelson and Reynolds 2003). Indeed, altruism is often key to older children’s decisions to take part in health studies (Lynch and Lynch 2013; Wolthers 2006). Given young children’s ability for empathy and altruism, we consider that this amplifies the need to inform even young children about research studies, and to create conditions for them to be able to refuse to participate.

Finally, research settings need to be assessed as facilitators or inhibitors of children choosing about participation. Certainly, older children may understand more about technical aspects of research, yet in a formal school setting, they may be less empowered to make their own choices than in ECCE settings that are – in the Global North – often less structured. In school, in contrast, the norm prevails that children should always act on adults’ instructions – an element of the hidden curriculum that children quickly internalise as they are required to adhere to disciplinary practices and develop docile bodies (Devine 2003; Dixon 2011; Giroux 2001).

Achieving valid consent: what is an appropriate level of information?

Typical legal consent guidelines specify that, at minimum, a participant should be informed about and understand: the nature of the research; what participation will involve; risks and benefits; the right to withdraw; what will happen to data and subsequent findings; and how these will be communicated (see e.g. MacNaughton, Rolfe, and Siraj-Blatchford 2010). Applying the same standards to young children may not be appropriate and depends on the nature of the study. A helpful principle in this regard is the more recent idea of ‘valid’ consent and the principle of proportionality (British Psychological Society 2014; Health Research Authority 2017). Valid consent assumes that information will be appropriate to the research topic and commensurate with the balance of risk and benefits involved. Participants should not be overwhelmed by unnecessarily excessive information, but rather it should be succinct, relevant, and promote autonomy. Indeed, the few available examples of young children’s information resources tend to focus on the nature of the research and the tasks/activities involved (e.g. Billy and his Heart Information Sheet: University of Oxford n.d.).

Presenting information to young children: what is ‘child friendly’?

Policy and practice recommendations recognise that how information is presented is critical in supporting children’s decision making (e.g. Department of Health 2001). Early examples of ‘child friendly’ image-based resources tended to involve decorative child-directed signifiers, such as cartoon characters, generic clip art, or smiley faces – yet these were unrelated to research activities, whose meaning was still communicated in text alone.

Illustrated resources may appeal to many readers but are particularly important for young children who have not yet learned to read. They are increasingly common in research with older children, yet reports of their use are surprisingly infrequent in research with young children. Recently, Mayne, Howitt, and Rennie (2016, 2017) developed an ‘interactive nonfiction narrative’ or ‘informing story’ with two three-year-old boys, on 27 slides combining text and images, to explain the research problem, the child’s participation, data collection, use, and the study’s potential audience. Similarly, Arnott et al. (2020) used an animated video and narrative picture book to communicate the research purpose, activities, dissemination and voluntary participation.

Illustrations encourage children to interact with text, both through enjoyment and attention and as a result of receiving information visually as well as verbally (Fang 1996). Illustrations assist children’s comprehension and memory of content (Beck 1984; Fang 1996). Young children who cannot yet read words can make meaning with pictures; pictorial texts have been found to support early readers’ learning: second-language learners (5–6 years) responded substantially more to images than to words when presented with both in picture books (Walsh 2003). Research on presentation indicates that young children prefer uncluttered pages, larger type, colour and bright-realistic illustrations (King 1967; Brookshire, Scharff, and Moses 2002).

Overall, while research suggests children and young people benefit from enhanced paper forms that include simplified language, illustrations, and narrative approaches, less is known about the value of these features with young children (Soll et al. 2020). We drew on these insights in developing the features we incorporated into a range of illustrated research information booklets we developed for large-scale studies with children aged 2–5 years. In the following sections we introduce examples and reflect on our experiences of their use.

Case studies: creating conditions of informed assent

We have used simple, visually led information booklets with 270 children in four larger-scale research studies, in early childhood care and education (ECCE) and formal school settings in the UK and Ireland, aiming to involve young children in a process of informed agreement. The studies explored children’s views and experiences via a range of methods: being observed, weighed and measured; providing saliva samples; carrying out executive function tasks on a tablet; reviewing video clips; taking part in interviews, and completing tasks such as drawing and image matching. Our aim was to ensure that, in addition to their parents and early years practitioners/teachers, young children themselves were adequately informed about research participation.

Case study 1: transitions in early childhood care and education settings

This mixed methods study explored experiences of children aged 2.4–4.4 years in ECCE settings. Adults reported children finding transitions stressful when they move ‘up’ to another age group and room – but children themselves had not been consulted. Tracking children’s moves in five settings over six weeks, we observed their behaviour and carried out child participatory interviews (including drawing and photograph activities) and parent semi-structured interviews. We charted parents’ and practitioners’ views of 26 children’s stress and behaviour over six weeks through standardised measures of adjustment and collected saliva swabs from children before and after transitions (to test for the stress hormone cortisol: O'Farrelly and Hennessy 2013; O’Farrelly and Hennessy 2014). In addition to parent information sheets, an illustrated children’s information booklet and a storybook supported children’s engagement (Figures 1 and 2). Our goal was to ensure that young children were adequately informed about processes of being observed; of engaging in research activities; and of giving a saliva sample.

Figure 1. Information booklets, Case Study 1, introducing the researcher and study. © Leungchopan; Jelena Stanojkovic; Robert Kneschle; _jure; wektorygrafika; owattaphotos; bravissimos; Photographee.eu; New Africa /stockadobe.com, Reuse not permitted. © yatate; Tartila; Elene Eskevich/Shutterstock.com, Reuse not permitted.

Figure 2. Story booklets, Case Study 1, introducing the process of collecting saliva swabs. © Tartila; Musjaka; Elena Eskevich; Duta indesign; yatate/Shutterstock.com, Reuse not permitted.

Case study 2: young children’s understanding of foods, brands and advertising

A multi-site, two-country mixed methods study in preschools and schools (172 participants, 3–5 years) examined awareness and understanding of food brands, advertisements, and ‘healthy’ and ‘unhealthy’ foods (Tatlow-Golden et al. 2013; Tatlow-Golden et al. 2014). In this study, to explain the concept of ‘healthy’ food to young children, researchers read a story about a mouse who wanted to grow up ‘big and strong’ (Figure 3), before showing children images of food and drinks and asking about eating these. Next, children were invited to match brand logos to a board of food images. They then watched YouTube food advertisements and were interviewed about them. Finally, height and weight were measured. First, however, these activities were all described in a 12-page A5 size information booklet (Figure 4) which formed part of the information pack. We asked preschool managers, school principals, or individual class teachers to read these with the children to prepare them for our arrival.

Figure 3. Mabel Mouse story to explain concept of ‘healthy’ food. © Orla O Boyle, Reuse not permitted.

Case Study 3: Children’s Thoughts about School Study

To consult with children about early school experiences, the Children’s Thoughts about School Study’s mixed methods included an individual interview with a structured measure about school liking and avoidance, a pictorial measure of school stress and wellbeing, semi-structured questions about a fictional rabbit starting school for the first time, and a draw-and-talk activity. As part of a larger randomised control trial of a home visiting programme, 57 children (4–5 years) in a disadvantaged community in Ireland participated. Illustrated information booklets were given to teachers and parents, and parents were asked to use them when discussing the research with their children (Figure 5). The research team used the booklet to explain the research to the children on an introductory visit; read it to children at the start of each interview; and used the booklet template to provide feedback to children at the end of the study.

Figure 4. Information booklet for children participating in the food, brands and healthy eating study. © Orla O Boyle, Reuse not permitted.

Case Study 4: the Playback study

The Playback study included eight children aged 4 and 5 years from reception classes in two UK schools participating in a pilot of a video feedback programme promoting teachers’ sensitive responding in classroom settings (the Video-feedback Intervention to promote Positive Parenting and Sensitive Discipline: Juffer, Bakermans-Kranenburg, and van IJzendoorn 2008, 2017) to explore children’s adjustment to Reception (first formal school year) and a complementary guided play module. In five sessions, the intervener films the teacher interacting with four children during free, structured, and guided play (10–15 min); the children return to the classroom and the intervener explores clips with the teacher, identifying positive, successful interactions. We sought children’s perspectives on taking part and whether they experienced the guided play interactions as ‘play’. As in the Children’s Thoughts about School Study, illustrated information booklets were given to teachers and parents; parents were asked to use the booklet when discussing the research with their children and it was read to children at the start of each interview (Figure 6).

Figure 5. Information booklet for the Children's Thoughts about School Study. © Rawpixel.com; micromonkey; Monkey Business; Oakozhan; James Steidl /stockadobe.com, Reuse not permitted.

Figure 6. Booklet for the Playback study. © Rawpixel.com; Photographee.eu; micromonkey; James Steidl; Oakozhan /stockadobe.com, Reuse not permitted.

Discussion and reflections

Having applied illustrated information booklets with 270 children aged 2–5 years, across four studies, spanning multiple methods and settings in two countries, we have concluded that the practice adds ethical and methodological robustness to research in several ways. Here, we consider expected and unanticipated benefits of their use; challenges encountered; and how the booklets interact with our intention to realise children’s rights, supporting their agency and voice.

Adapting practice: how the booklets were used

There is a risk, particularly in larger studies with multiple researchers, that the mere distribution of booklets as part of the family information process could function as a shorthand for assuming children have been informed and have given assent. It soon became evident however that we could not assume adult stakeholders had actively engaged children with the booklets. We trialled reading the booklets to a group, but found the process worked best as one-to-one interaction with potential participants (see also Arnott et al. 2020). The familiar form and narrative structure of booklets may be particularly well suited to this, as looking at the images and turning pages together supported dialogue and questioning: the child is more of an active participant who can manipulate and explore the booklet and revisit previous pages. Reading the booklet together also had the benefit of starting interactions with a material, familiar artefact that helped establish rapport and reduced the immediate ‘spotlight’ on the child.

Exercising agency: children chose methods, timings and whether to take part at all

In using these booklets, we found children exercised their agency regarding research participation in a number of ways.

The booklets supported some young children to exercise agency by identifying a time for participation that felt right, e.g. when they would not miss valued playtime, as illustrated by the anecdote at the start of this paper. Choosing a convenient time is a basic courtesy that researchers routinely accord to adult participants, yet this may not always be easy for researchers as it may disrupt plans to achieve session participation targets. The material artefact of the booklets supported children and researchers to honour the principles of voice and choice.

Researchers may often feel uncomfortable at the experience of ‘losing’ a young participant whose caregiver had consented. Yet we took as a measure of our success the occasions when children sat with us to read the booklets and then decided not to participate – particularly in schools, where children quickly begin to learn compliance with the hidden curriculum (Giroux 2001), in contrast to the relatively freer ethos in preschool settings. For example, during the Children’s Thoughts about School Study, children in Junior Infants (aged 4–5 years; UK Reception) for whom we had received parental consent came to meet the research team; after going through the booklet with the researcher, two decided not to take part.

On multiple occasions we saw evidence that the booklets and images supported a ‘layering’ approach (BPS 2020) that broke the research process and activities into smaller points. Children decided exactly which parts of the research they were willing to take part in; for example, in the food and brands study, two 4 year olds chose to take part in all activities but not to be measured for height and weight. This suggested that the booklets worked to familiarise children not only with the idea of research in general but with the specific activities they were about to encounter. We believe the use of realistic images was key, particularly in the case of saliva sampling and height and weight measurement which may be less familiar to children in these settings.

Establishing relationships with children

Familiarity is especially important in research with young children (Barley and Bath 2014), and ideally every study would involve familiarisation before research begins. Yet, particularly for larger-scale studies, advance research visits prior to data collection proper are not possible due to study design, resource demands, settings (e.g. home) and scheduling constraints if there are multiple team members. The children’s information booklets were valuable in bridging this gap.

Even though not all parents had read the booklets with their children, we found the booklets did help to foster familiarity between the research team and children even before the research encounter. The Children’s Thoughts about School Study booklet included images of all five researchers in the team carrying their canvas bags with research materials; the Playback study also included images of children’s own school. On arrival at the school on research days, children sometimes spontaneously greeted researchers by saying that they recognised us, and often enjoyed picking out members of the research team from the photo. This acted as a useful icebreaker.

Establishing rapport and trust is likely to be key to supporting decision making in any interaction, and adults told us that it was helpful to have resources that visually introduce the research team ahead of time (Mattock et al. 2020). In this way, the illustrated resources help to build an identity for the research and this may be especially beneficial in longitudinal studies.

Communicating complex concepts

Communicating a study’s purpose to justify a researcher’s presence is a complex exercise, and research methods rely on children engaging in behaviours that may be unfamiliar, or understanding new words or concepts. Can abstract notions be communicated to young children? Here narratives and analogies may be well employed. Mayne, Howitt, and Rennie (2016) effectively employed the image of a toymaker who wants to find out how good his toys are for helping children to learn about science. Similarly, we found that narratives offered creative ways of communicating information about the study rationale and underlying complex concepts, using storybooks based on anthropomorphised characters. In these studies, Rocco the Astronaut (Case Study 1; Figure 2) helped to introduce children to the process of using a swab to collect a saliva sample. ‘Mabel Mouse’ (Case Study 2; Figure 3) helped researchers to establish rapport with participants and to introduce the complex idea of what kind of food was ‘healthy’. The staged process of reading information and other booklets with children individually allowed for strong rapport building during large-scale research studies and those that employed complex concepts or unfamiliar methods.

Better relationships and understanding leading to better data?

Our application of these booklets not only supported informed assent procedures, but may have helped to enhance the quality of the data in each study. Children actively make sense of their research participation (Tudge and Hogan 2005) including decoding the role of the researcher. In early years and school settings the information booklets can help the researcher to explain that they are adopting a ‘least adult’ or ‘interested other’ role (Mandell 1988; Thomas and O’Kane 2000). Such roles help to subvert possible assumptions that adults are there to teach children rather than to learn from them. By situating ourselves outside of typical adult instructional roles, and positioning ourselves as wishing to learn from children, we found that children were patient with our many questions about their everyday experiences, whether these were about foods to eat or explaining what it means to ‘learn through play’.

We found the assent booklets were also a helpful prompt for researchers to consider the child’s perspective in the research encounter. In particular in studies with multiple researchers gathering data from different research sites, the booklets help all those engaged in the study to honour these principles, and may mean that the teams’ questions and prompts were of better quality.

An unexpected benefit: relationships with gatekeepers and families

An unexpected benefit of these simple illustrated booklets, devised for young children themselves, was fostering communication and trust with gatekeepers. Arriving to education settings as outsiders, we found that the booklets helped to establish our positioning: that we viewed children as agentic and capable individuals who would actively make sense of their research participation and that children’s experiences were worthy of study in their own right. Although it had not originally been the intention, this helped to open the door for various discussions about the research with prospective settings. As with Arnott et al. (2020) we found that the values inherent in the booklets tended to resonate with the ethos of practitioners in early years sectors. Another benefit was that the booklets helped to establish relationships with families. In studies based in education settings, parents and guardians may be asked to give consent without ever coming into contact with researchers; the booklets allowed us to introduce ourselves to families via photos of researchers.

A further, important and unanticipated benefit of these visual resources was that we learned that they can support adults’ understanding of the research study. To ensure compliance with universities’ ethical requirements, formal information sheets are often long and complex (Mattock et al. 2020) and schools and early years settings consistently feed back to us that these are off-putting to parents. Feedback from gatekeepers at education settings was that the illustrated, simplified booklets were considered more appealing. A related and important benefit was that education settings reported to us that the booklets facilitated comprehension among parents whose English reading skills were limited. This is in keeping with general principles for making information more accessible to research participants such as breaking complex information into smaller points (BPS 2020).

Booklets as material artefacts with discursive power: setting out principles for all to see and hold to

We found the booklets held a kind of discursive power for all of those engaged in the research process – children, teachers, ECCE and school gatekeepers, parents, and researchers themselves. As a material artefact connecting researcher, school or preschool, teachers, parents, and the child, they were a formal, visible articulation of the principle of children’s agency and of our expectation that young children can and do understand these concepts.

Negotiating choices about participation can often be a challenge in school settings in particular, where we found that it counters the disciplinary norm that children will act on adults’ requirements – an element of the hidden curriculum that children quickly internalise within months of first attending school. The booklets helped us as researchers in situations where we needed to resist (well-intentioned) adult pressure for all children to participate. The discursive power of ‘official' study booklets allowed us to diffuse authority and advocate for children’s right to be heard regarding their research participation preferences without offending education setting staff and gatekeepers by contradicting them.

Ironically, considering the widespread assumption (supported by UNCRC principles of evolving capacities) that children’s ability to express consent increases with age, in fact we found that negotiating about choice was often easier with younger children in preschool settings, compared to older children in school. Here, understanding the context is key. In most school settings, compliance with adult demands forms part of the hidden curriculum, meaning that even if children had greater understanding about research activities, it could be harder for them to exercise agency regarding research participation. In schools, the material artefacts of information booklets were particularly helpful, acting as reminders for all adults in school settings that the values of valid, informed choice about participation trumped contextual social expectations that children should comply with adults’ requests.

Further developments

The influx of technology and digital devices into everyday life also opens up new possibilities for visual resources. Study websites and information videos can now be created at relatively low cost (Mattock et al. 2020). Video may be suitable for specific studies. For example, in Case Study 1, we found that it was difficult to convey the nature of the mouth swab saliva collection procedure via still images alone: a brief video would have been helpful for clarifying the exact process for children. In another study in the PEDAL research group, a PhD researcher (Graber, in preparation) conducted remote video interviews with children about their experiences of play during the pandemic. Graber produced a brief video for children aged 3–10 to watch with their parents to introduce herself and the purpose and nature of the study. However, we also note that video is not inherently superior to narrative booklets, particularly as it is less flexible to adaptation for the pace of the child and to being explored in a non-linear sequence.

A further opportunity for developing the scope of information booklets would be to draw on these to communicate the limits of confidentiality, particularly for studies exploring more challenging topics. Here, they can explain to children that the researcher may need to talk to another trusted adult (e.g. teacher) that can help if further help is needed, and support field researchers to follow appropriate safeguarding procedures if a child does make a disclosure.

Conclusion

We have found that, in studies with young children, information booklets were effective in multiple ways: facilitating young children’s agency and choice ; supporting relationships with all stakeholders; articulating the underlying values about voluntary research participation; and supporting the quality of the research encounter itself. They also supported the process of children’s decision making as part of the researcher’s ethical radar (Skånfors 2009) in which the researcher must not take assent or refusal as absolute but rather attune to the child’s verbal and non-verbal signals throughout the research process. Like other socio-legal processes, assent and consent are interactive, relational, influenced by the contexts in which research is situated, and should be responsive to individual children’s needs, understanding, capacity and preferences (Mayne, Howitt, and Rennie 2016).

We therefore conclude with a caution that focusing on the rights-based concept of ‘evolving capacities’ and applying decontextualised linear notions of children’s development can lead to underestimating young children’s capacity to understand and make informed choices about research participation. Indeed, our experience is that illustrated booklets can successfully support children as young as 2 years to express their views about their research participation.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The reflections on young children's rights, informed choice and research participation in this paper are those of the authors.The informed consent processes took place within four different studies across Ireland and the UK, supported by the following funders: the Department of Children and Youth Affairs (Ireland) at University College Dublin; Safefood (The Food Safety Promotion Board, Ireland/ Northern Ireland) at University College Dublin and Queens University Belfast; the Northside Partnership Department of Children and Youth Affairs, Ireland and The Atlantic Philanthropies, at University College Dublin; and the LEGO Foundation (Playback Study) through a donation to the Play in Education, Development, and Learning (PEDAL) Research Centre at the University of Cambridge .