Engaging With Children: Why We Must Continue to Learn From Every Study We Undertake

Introduction

The recent emphasis on foregrounding data generated with children is now firmly established, with researchers viewing each child as an active participant in research (Wall & Robinson, 2022). A new sociology of childhood has been accepted, one that now positions children as valuable social actors who should be heard (Darbyshire et al., 2005; James, 2007; Koller, 2021). We need to find the best ways to hear from children. In the context of decision-making, Lundy’s model (Lundy, 2007) helps us to establish conditions and environments that enable children to effectively express themselves to be heard, where it is not just about ‘voice’, it is about them being given space and opportunity, it is about the audience, about being listened to and given due weight, as well as influence, where views are acted upon appropriately. In the context of children as research participants, Lundy’s rights-based model continues to have significance (Department of Children, 2024), and our focus shifts here to think about how we elicit children’s voices, about our approaches to data collection that are supportive of children’s diverse abilities and perspectives, and conducted in a participatory manner (Carnevale, 2020). Hence, it is important for us to use methods that can optimise the participation of children (Rollins, 2018). It falls to researchers to collect data with methods that respect children’s ways of communicating (Sevón et al., 2025). Helpfully, there has been a swell of literature related to methods of undertaking research with children (Coyne & Carter, 2018); the scholarship for doing so is growing, but these methods should not be considered unproblematic (Bryan et al., 2019; Waller & Bitou, 2011). Significant assumptions are emerging as areas of recent concern that require careful reflexive thought from researchers working with children. First, the child voice is almost always produced through intergenerational dialogue, ‘there is always an adult present somewhere’ (Facca et al., 2020), with research inevitably driven by adult research agendas, adult-centric views, and priorities (Holland et al., 2010). Second, the belief that the ‘participatory tools’ themselves somehow enable participation; they require ‘personal engagement of the researcher to support and understand children’s participation’ (Caldairou-Bessette et al., 2020). We join this ongoing dialogue, as we recognise the importance of researchers explicitly and reflexively attending to the methodological implications of their approach to ‘voice’ (Facca et al., 2020), paying close attention to ‘how’ participation is enacted (Holland et al., 2010), how children are facilitated to express their views, and challenges involved in eliciting and understanding children’s voices in research.

Our study did not fall into the category of participatory research design (Brown, 2022), where participants are involved in the research process, from problem identification and developing the research question to dissemination of results. Nonetheless, we feel our learning in relation to research methods that facilitate children’s participation in research (Rollins, 2018) offers insight into the potential benefits of describing what Franks might refer to as a ‘pocket of participation’ (Franks, 2011) when involving children in the entire research process is not possible. We used creative techniques within a qualitative study in order to optimise children’s abilities to participate during data collection. Expressive methods were used based on our understanding that they would provide children with the language needed and confidence to express their thoughts and describe their experiences. Our discussion draws upon a study we conducted with five children aged between 7 and 11 years; they all had a rare craniofacial condition. We wondered to what extent children were engaged with us in the research, reflecting on the different approaches we used with the expressed aim ‘to engage’ by providing children with the language needed to express their thoughts and describe their experiences of happiness, fulfilment, and resilience. We present a brief overview of the study to contextualise the discussions that follow.

Description of the Context

Our aim was to explore happiness, fulfilment, and resilience in children with rare diseases and their families. Resilience is a known protective factor, where a positive health outcome can be achieved through successful coping (Haase et al., 2014). Connectedness has been shown to support the development of resilience, for example, connectedness to family and social domains, such as friends, parents, school, and home: children who are highly connected have been shown to have the lowest levels of post-traumatic stress symptoms (Howard Sharp et al., 2015). Feeling loved and having positive supportive relationships, particularly with family and friends, was a top priority for children to have a happy life (Office for National Statistics, 2020): maintaining connections with loved ones is clearly important to children. Thus, it may offer an approach that is amenable to intervention. We set out to amplify the ‘voice’ of children living with a rare disease by understanding how they viewed their own happiness and to trial the idea of using a physical ‘Bank of Happiness’ for storing reminders of happy moments and memories. We considered this could facilitate a continued sense of connection with people, places, and objects which instilled a sense of happiness, that children living with a rare disease could draw on to help them cope with difficult situations and build their resilience. As a visible and tangible way of creating, before the child’s eyes, what inner strength may actually look like, we considered the ‘Bank’ had the potential to enable children to practice and rehearse strategies that help them cope with their emotions, resolve inner conflict, and bring them to a calm emotional state. We thought this a possible ‘tool’ that children might be able to draw upon at difficult times, for example, when in hospital.

Children took part in individual interviews and group creative workshops (Figure 1) and were encouraged to identify, reflect on, capture, and store happy moments. They were given a camera and printer, art materials, and a box that would represent their ‘Bank of Happiness’. Our overall aim was to explore happiness, fulfilment, and resilience in children with rare diseases. The study had the following specific objectives:

(1) To explore with children with rare diseases ways of generating feelings of happiness using each of the five senses.

OPEN IN VIEWER

Figure 1.

Data collection with children

Five children participated. They were aged between 7 and 11, only one was female, and all had a rare craniofacial condition, some with accompanying fusion of the fingers and/or toes. One of the children had a tracheostomy, two had a hearing impairment, and one had attention deficit hyperactivity disorder (ADHD).

We used a number of different approaches to support engagement with children, beginning with a home visit, to learn more about the child. Data generation took place over a period of 10 weeks and involved two workshops with a face-to-face interview between the workshops. The researchers all had extensive experience of working with children. Two researchers (SG and AW) undertook the interviews, and alongside the rest of the team (FG, KO, and JW) participated in the workshops. An artist (IM) joined the research team at each of the workshops, which meant we were able to maximise creativity when working with children at various stages of this project. Parents were in attendance, and in some cases we were joined by siblings. Remuneration was provided for attending any data collection sessions at the hospital, making participation accessible, and we covered the cost for families to attend, including siblings.

Ethics approval was sought as our study involved recruiting children from a hospital; this was given by the Yorkshire and Humber NRES committee (reference: 15/YH/0088). The procedural ethics was straightforward, and we examined closely the ethical principles relevant to and important for research with children. Undertaking consent, maintaining confidentiality, and ensuring child protection were well described in our study procedures. We used research team meetings and reflexivity to examine more closely ethics in practice, the ethically important moments in research practice (Guillemin & Gillam, 2004).

Drawing upon the work of Leavy (Leavy, 2015, 2017), ‘Connection’, ‘Creativity’, ‘Collaboration’, ‘Consideration’, and ‘Congruence’ (the ‘5Cs’) were at the heart of this study involving children, parents, researchers, and a professional artist: we were all active in creating data via inquiry. We were somewhat ambitious in our plans, so we have chosen to reflect on each of these ‘Cs’ to share our learning, in particular exploring what worked and what did not work, examining closely how engagement was facilitated through the methods we chose. We do so, suggesting reasons to best illuminate methodological decisions we make when working with children in the context of research.

Methodological Approach – What We Did

Workshop 1 – Artist-Led

At the beginning of the first workshop, all children and members of the research team introduced themselves. Children had been asked to bring their favourite item to show the group, and this proved to be a good icebreaker, a way for children to become immersed in the workshop from the start and ensured that the workshop was focused on them and their narrative at the outset. The artist leading the workshop had prepared a number of things for children to do; activities she had successfully used before with children. Children were given a ‘world map’ comprising three areas – places, people, and things – which would serve as a pictorial representation of their world to use and refer back to when completing the photography element of the study, in relation to ‘capturing’ the things that made them happy. In order to complete their map, stickers were provided; children could either draw on stickers themselves or use the pre-printed stickers (Figure 2). The artist had created some of the stickers using information children had given during their initial interview about the things they like, forging further connections in the workshop, evidence also that we had listened to what they had to say. Children loved seeing their favourite things laid out on the table and being able to stick them onto their map (Figure 3). Having stickers pre-printed helped to ensure they had a variety to work with by the end of the task and helped them not to feel pressurised to create their own images.OPEN IN VIEWER

OPEN IN VIEWER

Figure 3.

An example of a child’s map

We soon realised that children could have spent more time on the map exercise as they became engrossed in meticulously drawing members of their family. It was therefore suggested that they took extra stickers to finish at home so that the group could move onto the next activity. The artist discussed with the children the different ways of storing memories and presented each of the children with a ‘Happiness Bank’ (Figure 4). Children were informed that this was their box to keep and they could use it to store their happy moments and memories. The boxes operated using a small key which gave children ownership of their box and the privacy to lock things away. The artist had sourced wooden boxes which could be decorated by the children and they enjoyed spending time painting and personalising these during the workshop. Unfortunately, there was not enough time during the workshop for children to be able to finish decorating their boxes and it was difficult to bring the task to an end. Some of the boxes were still slightly tacky when it was time for them to be taken home.OPEN IN VIEWER

Creativity and Cameras

Children were participants as generators of data (Punch, 2002). They were given their own digital camera and printer at the end of the workshop to take home and were asked to draw upon some of the techniques discussed during the workshop to capture their happy moments and store them in their ‘Bank of Happiness’ prior to the next workshop. We gave them control over what photos to take with no suggestion on what should be captured, allowing them to construct their own world into which they could invite the researchers (Harper, 2002). We anticipated that by giving choice, the photographs would more likely reflect what children rather than adults considered to be important (Cook & Hess, 2007). A few weeks after workshop 1, children met with a researcher to review their progress and engagement with this ‘happiness’ activity.

Photo-Elicitation Interview – Researcher-Led

Researchers conducted photo-elicitation interviews (Leite et al., 2021), a method that already has a place in the tool box of researchers working with children (Gibson et al., 2012). These were conducted approximately 4–6 weeks after children had been given their camera. We recognised the need to be flexible in our approach to working with families, providing choice as to whether interviews were undertaken in the family home or at the hospital just prior to workshop 2. Only one family chose to be interviewed in the home, and other families were interviewed in the hospital setting. During these interviews, the child’s box and its contents served as a prompt for discussion, enabling the child’s data collection and storage process to shape the direction of the interview and provide insight into their world. As it was the first time that the researcher had seen the child’s photographs and box, the ‘interview’ was organic in nature, with children guiding the researcher through the items they had selected to store. The child picked out the items to show the researcher, so the ordering was led by them: any item not discussed was because the child chose not to show them to the researcher.

Although visiting children at home was time intensive for the researchers, it served to support the study’s focus – about the child’s world outside of the hospital context. Children had access to things which they could show the research team, and it placed children in control of how much they showed the researcher and how long the interview lasted. During the one home interview, a child went back and forth from his bedroom retrieving items to show the researchers, and finished the interview by giving a demonstration of his karaoke machine.

During these interviews, children were only asked questions about their life and what they enjoyed doing so as to ensure that they were easily able to answer the researcher’s questions. In all cases, one or both of the child’s parents were present. Whilst it is sometimes felt that parental input can prevent the child’s own narrative from emerging, our experience is that their presence is crucial to the child being comfortable and facilitating communication between the researcher and the child. Parents were able to remind children of things they had forgotten, or to encourage them to give more detail about their favourite people, places, and things which had not been captured by their photo. For example, one child showed the researcher a picture of a castle explaining which castle it was and what could be seen. When the child’s parent asked them to tell the researcher what they had done that day, the child gave a detailed account of how they had had a family picnic and this led on to a conversation about ‘family time’. This role of being an ‘aide-memoir’ to their child, a more interpretive role (McNeilly et al., 2021), was how the interviews progressed, with the researchers engaging directly with the child, and asking the child to comment on what a parent had said.

However, in one of the interviews, parental presence dictated the course of the interview, with the child largely responding to what their parent told them to show the researchers. The absence of a parent during one interview also had an impact, as the child was not able to recall anything outside of the photo they were showing the researcher, simply stating that they could not remember. Given that the researcher knew nothing of the circumstances surrounding the taking of the photo, this child was limited to describing what could be seen. On occasion, parental presence did sometimes make for a chaotic interview, with the child trying to balance what they wanted to show the researcher with what their parent had suggested. Parental presence or absence had an impact on children’s engagement.

The number of photographs taken and stored in each child’s ‘Bank of Happiness’ ranged from nine to 19. Photographs included children’s favourite toys and games, pets, family, friends, school, holidays and days out, hobbies such as singing and dancing, and significant events such as an award from the headteacher, birthday celebrations, and one child giving a speech in church following their craniofacial surgery. One child also took a photograph of their ‘happiness box’. Examples of what children said about their photographs are provided in Table 1.

OPEN IN VIEWER

Table 1.

Selection of Quotes From Children About Their Photographs

Photograph	Comment
Pet dog	‘It’s a Beagle, it’s a girl’, she’s called Piper. She really likes to eat food, she’s literally a hoover, she eats anything. I like playing with her. I like cuddling with her especially when it’s at night, when I’m almost asleep’.
Friends	‘We were on the trampoline in our back garden … we were playing with that ball … it was really exciting to play with the ball’.
School	‘I really like it because it gives me a good education, I really like the teachers, they’re kind and helpful. Especially on Fridays because that’s when we have ICT and maths’.

In most interviews, children were fairly limited in what they were able to say about their photographs, particularly when it came to recalling how they felt. Most exclaimed ‘happy!’ but were unable to discuss more abstract concepts, for example, why they felt happy or what that felt like. Connecting emotions to photographs was not easy. Children remained quite factual in their descriptions, despite researchers asking them specifically about how they felt. The use of photographs stimulated conversations about events and experiences; we were invited into their worlds (Zurba et al., 2017). But despite the fact that photo-elicitation is known to elicit powerful emotions (Leite et al., 2021), when asked specifically about happiness, and what made them happy, children struggled to answer this. We had in our ‘toolbox’ emotion cards. We used these towards the end of the interview, and used ‘bear cards’ (Kreicbergs et al., 2022) which allowed greater exploration of different emotions that the children might feel in response to their photographs (Figure 5). Children responded well to this exercise, although still tending to opt for the bears that looked ‘happy’, perhaps reflecting their state of happiness; their use generated further discussion of other emotions that the children might feel at different times.OPEN IN VIEWER

Collaboration: Working Creatively in a Group

Children were brought together for one final workshop which took place at the hospital. They were asked to talk about their ‘Bank of Happiness’ and share some of the happy moments they captured during the data collection period. This exercise provided an opportunity for children to share their experiences of feeling happy with others. During the workshop, there was an initial senses activity, used to expose children to everyday things that might generate feelings of happiness or trigger happy memories. In the second half of the workshop, children collaboratively created artwork using some of the ‘happy moments’ they had captured.

The senses activity was used to make it more vivid for children by thinking about what they could smell, see, taste, feel, and hear at the time that these memories were stored. A table with common household items, musical instruments, and toys was set up, and children were invited to explore the items and think about what they liked about them, relating it to their senses. They were then asked to think about the photographs that they had brought with them and whether they could identify anything in them that they could taste, smell, touch, or hear. Although children enjoyed looking at the various objects, so much so that before the workshop started they had already begun playing some of the instruments and with some of the toys, they found it difficult to relate their senses to their own experiences.

Collaborative artwork, through the creation of a happiness tree (Figure 6), was used as a way of giving children a chance to work together and create something collectively. Children were asked to stick some of their chosen photographs onto the tree in turn, explaining to the group what the photograph was of and why they had chosen it. But there was no peer ‘audience’, as the other children were busy gluing and sticking. The children happily completed the task and contributed to something that would be kept by the research team. However, they found it difficult to work together and actually creating the artwork became a individual process, as did the process of sharing with the group how their ‘Bank of Happiness’ had helped them (Figure 7). This may have been because the children were relatively young (7–11) and had only met once before, so they had not had time to build connections with each other. We should also consider whether having 1:1 support during the workshop inadvertently acted as a barrier to children interacting with each other because their attention and efforts were instead focused on the interactions they were each having with the supportive adult. Being cognisant to this in future and placing more attention of the role of adults in facilitating group interactions could mitigate against this. However, it is also important to recognise that bringing children together with diverse and complex health needs may mean that working alongside each other, rather than working ‘together’, is the most appropriate and likely outcome and that what we should be asking is what impact that has on what we are trying to produce and whether that matters.OPEN IN VIEWER

Figure 6.

The tree of happiness

OPEN IN VIEWER

Figure 7.

My box has helped me to…

Discussion – What We Learnt

The methods we used seemed to engage children and foster creativity. We have reflected on what worked and what did not work (Table 2), in the context of research that aims to be engaging and to helpchildren to express their thoughts and describe their experiences.

OPEN IN VIEWER

Table 2.

Learning From Our Study

Objective	Achieved/not achieved	Reflections
(1) To explore with children with rare diseases ways of generating feelings of happiness using each of the five senses		This objective was incorporated into the topic guides for one to one interviews with participating children, as well as into an activity during workshop 2. It seemed to be too abstract a concept for the younger children to grasp, and we did not manage to explore this in the way we had intended to.
(2) To understand what makes children with rare diseases feel happy and why		Children were able to very clearly articulate what made them happy and, to a lesser extent, explore why, both in one to one interviews and during the workshops. It was also apparent through their use of the happiness box that they were able to identify and capture the things that made them happy.
(3) To explore the feasibility and acceptability of • Art • Photography as methods of helping children with rare diseases to capture moments of happiness and remind them of happy memories		Two out of five children used the art materials to record happy moments.
		All five children took photographs, printed these, and put them in their boxes.
(4) To explore the feasibility and acceptability of a ‘Happiness Box/book’ as a way of fostering happiness and fulfilment in children with rare diseases through empowering them to  (a) Store visual and written reminders of happy moments  (b) Draw on happy memories when they need to		It was evident from the second interview carried out with children that they were able to use the box as intended, to store reminders of happy moments.
		It was less evident that they used it to draw on happy memories when they needed to, as none reported any particularly difficult times since they had received the box, or indeed reported using it in this way.

Connection and building a rapport were key components of our study. We employed specific strategies to help us get it right, for each child, and this relied on us making the process relevant to them, to be highly personalised, both at the individual and group levels. The pre-interview phone call with parents ensured that researchers knew the child's physical and communication needs, enabling them to prepare in advance for meeting each child. The inclusion of the first interview we believe was crucial to establishing an initial relationship with both the parents and their child. Taking the time and investing in this relationship, this initial conversation, helped us as researchers to have a good understanding about what matters to children. Learning about children’s knowledge and working with generational issues (Kiili et al., 2024), we emphasised the importance of their participation, on why we needed to learn from them. Of course one meeting is not enough to establish rapport (Irwin & Johnson, 2005), but it was enough to form a connection that was built-on in the workshops, assisted also by the use of a semi-structured format that encouraged children to talk freely and guide the direction of the interview (Spratling et al., 2012), and familiarity with the research team (Barley & Bath, 2014). On reflection, this pre-workshop meeting was essential; despite the additional time this would add to a project, we would highly recommend a period of ‘getting to know’ children and showing them how much we want to learn about them.

Key to addressing the question of ‘what makes children happy’ was giving children control and autonomy, and we used creative methods to assist us. We provided a camera and printer for each child, and they were given control over the whole process. Children had to make several choices: what photos to take, what to print, what to store in their box, and what to show the research team, placing them in control of what was shared and collected as ‘data’. It was evident that some parents had made suggestions to their child of what they could take photos of, which may have influenced the choices children made of what photos to take. How far this influenced what to store in their ‘Happiness Bank’ is somewhat unknown. But what was also evident is how important parental presence was, particularly in the interviews, and how interviewing children is enabled through rapport with parents, with researchers having an important role in sensitively guiding parents in what their role is.

In the majority of cases, parental presence helped to facilitate engagement in the interviews. Our perception was that parents contributed to children’s accounts, by supporting them in thinking about ‘what makes them happy’ and drawing upon family experiences in the telling of their story. The unique understanding parents have of their child and of events in their child’s lives might have been missed if we had limited the presence of parents during interviews. Our concern as researchers is in examining how far these interactions resulted in leading the child, even in a complementary way, and hence compromised the integrity of the data. Similar to others, we are of the belief that their assistance and use of cues during interviews were helpful, adding a completeness to the child’s stories (Gardner & Randall, 2012). Children will often look to adults for cues and assistance in conversations (Irwin & Johnson, 2005). In our study, parents were key to helping us connect with their children, to us developing a rapport, and supporting their child in the telling of their story. In the interviews, although some children had clearly been guided by their parents as to what photos to take, children chose which photos they wanted to talk about in the interviews, the researcher was guided by the children, and any support by parents was followed through with questions to the child. In the workshops, parents were not present. We positioned the child at the centre in all of our activities; it was the child’s voice we were committed to reporting on.

The data collection was participant-led: children were ‘active’ participants rather than ‘passive’ subjects (Hill, 2006). Information gathered at each stage of the study was used to inform the next part, for example, personalising the stickers that children would use in workshop 1 with information gathered during the initial interview. The activities for workshop 2 were not finalised until the research team had run workshop 1, ensuring that activities were suited to the individuals as well as the dynamics of the group as a whole. This iterative process, of learning about each child, learning from the data collected, and combining this knowledge in the final workshop, we believe, helped us to continue to engage with children. We needed to be more flexible around the timings of activities, most importantly is that children and their families know when the workshops will end. There is a balance between keeping the workshops tight, reducing the burden of participation on families, and allowing enough time to accommodate individual needs to fully engage. In our study, we were balancing the needs of children who needed longer to undertake physical tasks such as crafting due to the fusion of their fingers, with those with ADHD who struggled to concentrate for long periods. Such challenges are inevitable when bringing children with diverse needs together. Important is not assuming that either shorter or longer sessions are better but giving due consideration to all factors and being clear from the outset where compromises can and cannot be made.

Use of the ‘arts’ in research is known to help researchers explore experiences, feelings, and emotions, or other concepts which are known to be difficult to verbalise, either as an adult or child. Their use can provide new insights and understandings, and they can also empower children in relation to the adult researcher (Driessnack & Furukawa, 2012). Despite the complexity of their medical condition and associated limitations and learning needs, children engaged with the creative elements of the study – particularly building their world maps and personalising their ‘Bank of Happiness’.

At the outset, we wanted to make sure our study was fun, engaging, and accessible, with ‘serious fun’ and ‘study robustness’ working together (Barker & Weller, 2003; Carter & Ford, 2013). We sought to work with children, and placed Central to participation was the use of arts-based approaches. We saw these approaches as key to engaging with children. We created space, and provided materials and activities tailored to this group of children to help them tell their story. Incrementally building on data already shared with the researchers, we showed how we were listening to them, how we were working with them in each workshop, and that we were using what we were learning from them. But this was an entirely adult-designed study. We selected photo-elicitation and shaped the techniques we used in each of the workshops. We did this on the understanding that we had used these techniques before, that we were competent in using them, and were confident they were fit for the purpose. The creative element, and working with an artist, was again our choice, based on experience (Oulton et al., 2024). Artists and researchers have much in common; we are driven by curiosity and creativity. Workshop 2 was all about exploring meaning; the artistic element was about exploring with children ‘what does this mean’, ‘how does it make you feel’, and ‘can you explain this to others’. Each activity was chosen to help children, to provide fun ways so that we could learn more. The activities themselves did not provide answers; they provided more data to be worked with. This was what we anticipated; nonetheless, we had to work hard to help children engage with the activities, particularly in workshop 2. Despite this, we can be confident that children did engage, they were certainly willing photographers, and they enjoyed talking about what was in their ‘Bank of Happiness’ during the interviews.

What was more difficult were group activities, and on reflection we needed to be more prepared tofacilitate children working on their own - playing more to their strengths and preferences. Paying closerattention before and during the workshop to how we could facilitate both group interactions andchildren working on their own. We learnt how adult supportive roles, whilst necessary to support individual participation, may sometimes act as a barrier to children interacting with each other.

Conclusion

Reflecting on what we do as researchers is key to improving both the science and practice of undertaking research with children. We have learnt much through this exercise, and are confident that connecting with children and creativity will always be key to success, assisting children and researchers when working together in the context of research that aims to understand their experiences. On reflection, for this group of children, we learnt that they were able to identify and capture things that made them happy. They were able to use the box as intended, to store reminders of happy moments. However, it was less evident that they used it to draw on happy memories when they needed to, as none reported any particularly difficult times since they had received the box, or indeed reported using it in this way. As an intervention, it has potential.

Consideration, evaluation of all elements of a study, and what it means to children to participate and what works best for them have only been touched on in this study, and we recognise the need to prioritise this, allowing more time and including them in our study design. Prior to any study being shaped from a research grant into a research protocol, we now work with children to ensure our methods are the best fit. We learnt much about collaboration with young children with complex needs, and the need for more responsive activities that help those who despite being in a group setting want to work on their own. The importance of working with children with lived experience was highlighted as a priority going forward, as research methods and techniques might need adjusting to be the best fit for a particular population. As much as it is essential to consider chronological and developmental age and physical and intellectual needs in our planning, simply knowing how children like to learn and interact with their peers is also important. Furthermore, whilst ‘ice-breakers’ are widely used to help research participants feel more at ease with others and the research team when first coming together, it may be more helpful to think about the need for ‘ice-melting’ activities, which allow participants more time to connect with each other before engaging in tasks intended to elicit much-needed research data. This has implications for resources, particularly time, and reinforces the need for careful planning at the outset by involving experts by experience in each stage of our research.

Most learning was gained thinking about congruence, and the need to make sure that our methods are fit for purpose, how far they facilitated engagement. There is now an increasing range of arts-based and creative methods to tempt researchers, and all require application by researchers who have knowledge of their use, and have training and experience to sensitively work with children; none should be used naively (Gallacher & Gallagher, 2008). In this context, we feel there is much to learn from Franks’ (Franks, 2011) notion of ‘pockets of participation’, where participation may not necessarily be evenly dispersed throughout the project (p. 22), for example,in the acute setting with children and young people in hospital or receiving palliative care. By focussing on and defining clearly ‘pockets of participation’, in this case the methods used in a study, and how to get those right, researchers have an opportunity to build their skills and confidence in this area, and for children and young people to be positively involved in that particular stage of a study. Our message is to keep on sharing and learning.