Piloting a Virtual Arts-Based Methodology to Explore Children’s Experiences of Chronic Pain: Methodological Insights and Lessons Learned

Abstract

In the field of childhood pain, the knowledge and expertise of children has long been overlooked. Instead, adult knowledge has been privileged over child knowledge, despite contemporary understandings that the experience of pain is subjective in nature and can only be fully appreciated by the person experiencing it – regardless of age, stage, or status. In this paper, we report on a pilot study that combined virtual semi-structured interviewing methods with arts-based research methods (drawing or painting, produced offline in the time between virtual interviews) to explore children’s experiences of chronic pain from their own perspectives. We use this study as a backdrop to make visible the ‘behind the scenes’ methodological work of arts-based research with children, paying particular attention to the ways in which our methodological approach created time and space for reflection, supported the co-production of knowledge, provided a means through which to visualize the effect of broader social influences on knowledge production, and provoked novel lines of analysis and inquiry. All these affordances call for deeply reflexive research practices. We suggest the methodological approach described in this paper can help amplify and add value to research with young children. The richness of the children’s accounts concerning chronic pain add to the body of evidence demonstrating that ‘even’ young children have knowledge, expertise, and insights that should be elicited to expand understandings of children’s pain and other similarly abstract topics, phenomenon, and lines of inquiry in health.

Keywords

children chronic pain qualitative arts-based research methodology co-production

Background

While it is estimated that up to a third of children experience chronic pain, with prevalence rates ranging between 11–38% (King et al., 2011; Leake et al., 2023), the contemporary understanding that children can feel pain is a relatively new phenomenon that remains understudied and scarcely understood (Carpenter, 2020; Dell’Api et al., 2007; McGrath, 2011). As recently as the 1980s, many clinicians dismissed the possibility that infants and children had the capacity to experience pain (Carpenter, 2020). In time this medical stance was overturned owing to child rights activists and researchers whose advocacy spurred interest in and led to the growing field of childhood pain research we know today (Birnie et al., 2014; Caes et al., 2016; Eccleston et al., 2021).

Contemporary understandings recognize pain as an unpleasant sensory and emotional experience that is subjective in nature and can only be fully appreciated by the person experiencing it (Canadian Pain Task Force, 2019; Raja, 2020). Pain, however, can also be conceptualized as an intersubjective experience that recognizes the connection between a person’s internalized knowledge about their pain and the social context in which that understanding is produced, meaning that pain can be recognized even if it has not been experienced first-hand (Garcia-Rodriguez et al., 2023). Chronic pain may be understood as any persistent or recurring pain lasting longer than three months that causes significant distress or significantly interferences with daily functioning (WHO, 2020). Current understandings of children’s experiences of chronic pain are perhaps best described in terms of the impact it has on their daily lives. Children living with chronic pain may withdraw from social activities, miss days of school, and experience emotional distress, all of which have the potential to affect their well-being (King et al., 2011; Kosola et al., 2017; Lisman-van Leeuwen et al., 2013). As a child with pain grows and matures, the chronic pain they experience is likely to persist into adulthood, along with the psychological and social effects of under-managed pain (Eccleston et al., 2021; Hasset et al., 2013; Lauridsen et al., 2020).

Whereas most adults who experience chronic pain can independently seek diagnosis and negotiate suggested treatment, children are reliant on their parents or guardians to access and navigate healthcare services (Joslin et al., 2023). In this way, children’s interactions within the clinical setting are always negotiated in a triangulated relationship between themselves, their parent or guardian, and the presiding healthcare professional. By design, this triangulation systematically lessens children’s power by positioning the parent or guardian as the default ‘knowledge holder’, those believed to interpret and communicate their child’s experiences and perceptions with an implied accuracy on their behalf (Carnevale et al., 2021; Joslin et al., 2023).

Researching Children’s Chronic Pain: A Privileging of Adult Knowledge

Unsurprisingly then, engaging adults to interpret and communicate children’s health experiences extends beyond the clinical setting as parents or guardians are often consulted when seeking to understand children’s thoughts, views, and opinions in research (Mah et al., 2020). In privileging adults as the vehicle by which to access and interpret children’s perspectives, clinicians and researchers alike tacitly assume that the experiential knowledge held by these young people is less important or less valid (Mah et al., 2020, 2021; Morrow, 2008). Although parents might be well informed of the pain their child is experiencing from a caregiver perspective—as it relates to the rhythms of their family dynamics and impact on their life quality—their perspectives should not be conflated with their child’s experiential knowledge (Caldairou-Bessette et al., 2020; Hurtubise & Joslin, 2023; Plummer et al., 2021).

Despite children having experiential knowledge of their own health, documented barriers continue to influence children’s systematic exclusion, or marginal inclusion, within research that explores difficult or sensitive topics, inclusive of pain. For example, children have been considered difficult to communicate with, difficult to understand, or unable to form complex opinions due to limitations of age and stage-based development, attitudes which presently persist in some fields like psychology, for example (Pate et al., 2019). Moreover, ethical tensions of engaging children with severe pain in research have often led them to being paradoxically excluded on the grounds that they are in ‘too much pain’ to share their perspectives (Plummer et al., 2021).

Centering Children’s Knowledge Using Arts-Based Research Methods

While qualitative research has long privileged words-based data collection strategies, arts-based visual methods have been gaining momentum as a highly versatile means of producing more nuanced understandings of experiential knowledge within health research (Bowman & Mah, 2024; Hurtubise & Joslin, 2023; Teachman & Gibson, 2018). Art-based methods consist of a diverse range of media from drawing or painting activities to photo-elicitation tasks, marionettes, vignettes, and more (Hurtubise & Joslin, 2023; Noyek et al., 2024; Teachman & Gibson, 2013). Such methods have been widely used in anthropological research to overcome the limitations of words-based data generation approaches (e.g., interview transcripts, field-notes) and have engaged groups of all ages and abilities in sharing their experiences and perspectives (Facca et al., 2020; Guillemin, 2004a, 2004b; Mah et al., 2020; Teachman & Gibson, 2013, 2018).

Arts-based methods continue to be employed in research with children across a range of disciplines, including health, as a democratic way to invite them into the research space and offer an avenue to visually communicate their experiences, and scaffold their engagement, throughout the data generation process (Lomax et al., 2022). These approaches have been recognized as a way to not only champion the co-production of knowledge between researchers and children, but also to help mitigate conventional researcher-participant power differentials by posing questions and the possibilities by which to answer them in ways that move beyond dialogue and cultivate creative spaces underpinned by dimensions of play, improvisation, patience, curiosity, and experimentation (Lomax et al., 2022; Spray et al., 2022). Some consider the processes of arts-based research to offer an alternative temporal rhythm to data generation, emboldening children to think and work through time and space, rather than demanding verbal responses in-the-moment (Angell et al., 2015; Bowman & Mah, 2024; Kalenjuk et al., 2023). Many have found success in using arts-based methods with children when aiming to examine questions that are abstract or difficult to explain such as their perspectives on health, healthcare environments, illness, and risk (Caldairou-Bessette et al., 2020; Hurtubise & Joslin, 2023; Mah et al., 2020; Mah et al., 2021; Piko, 2006; Teachman et al., 2020; Water et al., 2017).

Despite the noted contributions of arts-based methods to health research with children, this methodological choice is not without criticism, particularly in relation to analysis. From an audience perspective, the outputs of arts-based research tend to be thought of as “finished” products that exist separate from the context in which they were produced, however, many researchers caution against adopting this tacit and problematic assumption (Mah et al., 2020; Spray et al., 2022). Some argue that arts-based methods beget even more intense ethical reflexivity on behalf of the researcher so as not to overlook the generative processes that shape children’s creative outputs in the research space or divorce children’s creative expressions from the contexts in which they were made (Lomax et al., 2022; Spray et al., 2022). From this lens, content and form are inextricably bound; the processes of arts-based methods are just as important and worthy of exploration and analysis as the “final” products (Bowman & Mah, 2024; Caldairou-Bessette et al., 2020; Mah et al., 2020; Spray et al., 2022). Research within this context then requires openness to the “messiness” that underpins arts-based methods with young people, not as a concern to be circumvented or methodological failure to be weary of, but a foundational aspect of undertaking this work that demands a rigorous level of reflexivity (Caldairou-Bessette et al., 2020; Spray et al., 2022).

In this paper, we report on a pilot virtual arts-based study that embraces and leverages the “messiness” of arts-based methods (Caldairou-Bessette et al., 2020; Spray et al., 2022) in research with children. The study we report elaborated on Mah et al.’s (2020, 2021) approach for engaging children in drawing and painting as visual arts-based methods in combination with strategies for conducting semi-structured interviews with children (Teachman & Gibson, 2013) to elicit their perspectives on a topic of inquiry. We use this study as a backdrop for the aim of this paper, which is to make visible the ‘behind the scenes’ work of arts-based research with children while highlighting the promise of our methodological approach for generating new and meaningful insight into children’s experiences of living with chronic pain. In what follows, we pay particular attention to the ways in which our methodological approach creates time and space for reflection, supports the co-production of knowledge, provides a means through which to visualize the effect of broader social influences on knowledge production, and provokes novel lines of analysis and inquiry – all of which require a deeply reflexive research practice. We suggest this methodology, if scaled and leveraged in future studies, has the potential to inform best practices when engaging children in health-related research that concerns them (including but not limited to pain) as it firmly grounds the co-production of knowledge within a creative practice that champions children’s experiential knowledge.

Study Overview

In a virtual pilot study conducted in London, Canada, we explored children’s experiences of chronic pain (Ferreira, 2022). Following ethics approval obtained through Western University Health Science Research Ethics Board, we aimed to develop and refine innovative methods of data generation and analysis (Mah et al., 2020, 2021; Teachman & Gibson, 2013, 2018), with a view to engage children living with chronic pain in research in ways that privilege their first-hand accounts as knowledge. We framed the study within a social constructivist paradigm of inquiry, seeking not to uncover a single objective reality or ‘truth’ of childhood chronic pain, but to explore the multiple lived realities of chronic pain, and the meanings attributed to those lived realities from the perspectives of children (Lincoln et al., 2011).

Conceptualizing Children and ‘Child Voice’

In undertaking this study, we aligned with the branch of sociology known as childhood studies. We regarded children as ‘knowers’, as expert research participants with the capacity for insight into their own lived experiences of chronic pain and the competence to recount these experiences through research (Clark & Statham, 2005; Grover, 2004; Kortesluoma et al., 2003; Mah et al., 2021; Morrow, 2008). Importantly, in regarding children as ‘knowers’ in our research and seeking to foreground their voices on matters that concern them, we did not work within the limits of conventional constructions of ‘child voice’. That is, we did not regard children’s voices uncritically as having a singular or authentic point of origin, as owned by or internal to the individual (for seminal critiques of how child voice has been taken up in qualitative research see e.g., Komulainen, 2007, Spyrou, 2011). Instead, we engaged a more complex and nuanced theorization of ‘child voice’ that regards voice instead as interdependent, relational, and open to multiple interpretations (Carnevale et al., 2017; Carnevale, 2020; Facca et al., 2020; Spencer et al., 2020; Teachman & Gibson, 2018). We elaborate upon how this theorization of child voice informed our data analysis below.

This qualitative study, as originally designed, was to be conducted in-person. The shift to virtual methods was made due to the Covid-19 pandemic and related restrictions on in-person interactions and research. While this shift resulted in methodological innovation and benefits, it also posed a challenge to study recruitment. Our sample size of three participants is relatively small and limited in diversity; however, it is sufficient to support the conservative methodological and substantive claims made in this paper concerning the promise of our methodology (Kuzel, 1992).

Participants ranged in age from seven to thirteen years, and all had been living with chronic pain for a minimum of one year. Data were generated by the second author (KN), using virtual semi-structured interviewing methods combined with visual arts-based methods (i.e., drawings or paintings, produced by participants offline in the time between virtual interviews). This study was carried out by KN for her graduate thesis. KN’s interest in exploring children’s lived experiences of chronic pain stemmed from her own tacit knowledge of living with chronic pain since late adolescence. Throughout the study, KN engaged in a reflexive practice, acknowledging how her own experience necessarily shaped how she approached the topic of inquiry, interacted with study participants, and understood the meanings participants ascribed to their own experiences and understandings of chronic pain (Guillemin & Gillam, 2004; Patton, 2015). This reflexive practice was facilitated by the larger research team. Informed consent and assent were obtained via email, prior to data generation. Following this initial consent procedure, we adopted an ethics-as-process approach (Ramcharan & Cutcliffe, 2001) wherein informed consent and assent were revisited at frequent intervals throughout the study to ensure ongoing consent. For example, participants were offered frequent reminders that interviews could be ended early and continued at a later time for any reason, including those related to pain.

Study Design and Data Generation Methods

In setting out to explore this topic, our team was intentional in drawing on KN’s firsthand knowledge of living with chronic pain to design a study suited to the needs of this population. For example, our study design accommodated the need for frequent breaks and provided the option of multiple shorter interviews if desired. Children participated in two virtual interviews scheduled approximately two-weeks apart. Both interviews occurred virtually through the digital platform Zoom, ranged from 30-60 minutes in length, and were audio- and video-recorded for later transcription and analysis. Participants appeared to be located in shared spaces in the family home, which were conducive to the virtual study format (e.g., not too loud or busy). Parents were present at times during the interviews (e.g., to set up technology) but KN reinforced with each participant and parent that the child was “in charge”. In keeping with our understanding of ‘child voice’ as co-constructed, including within intergenerational relations, the presence of parents in the space was not viewed as problematic. The virtual interview space was similar in many ways to our experiences with in-person interviewing in the home. In the two-weeks between interviews, participants engaged in a visual arts-based task which occurred offline on the participant’s own time, without oversight or input from the research team. The specific data generation activities are elaborated.

Activity 1: ‘Getting to Know you’ Interview

Building on Teachman and Gibson’s (2013) recommendations for optimizing data generation in single qualitative interviews with children, the first interview began with a warm-up activity. This warm-up took the form of a virtual ‘question-and-answer’ game which served a dual-purpose of guiding the initial interview and serving as a warm-up activity, allowing KN and each study participant to establish a level of comfort and familiarity with each other. Using Zoom’s screen-sharing function, KN displayed a list of questions (labelled 1 through 10) on one side of the screen, and a virtual die on the other. The die was virtually rolled to display a number between 1 and 10. The participant was given the choice to read the corresponding question or have the question read to them, then decided who answered the question first (i.e., the participant or KN). Questions explored a variety of topics, including those designed to increase participant and researcher familiarity (e.g., what is one person, place, or thing you can’t live without?) and to spark imagination (e.g., if you could have any superpower, what would it be?). KN was intentional in making the interaction playful and allowing the participant to take the lead at times. If participants referred to their pain in the game, KN would follow their lead, exploring participant’s experiences of pain with them. The remainder of the first interview involved dialogue oriented around getting to know the participant’s daily routines, social network (e.g. family, school, preferred activities, etc.) as well as some introductory discussion of the child’s experiences of pain.

This format allowed the participant and KN to come to know each other as more than ‘a child living with chronic pain’ and an adult researcher interested in learning about children’s chronic pain. It laid the foundation for a research relationship in which participants felt secure to share their experiences through the study activities that followed. Nearing the end of the interview, KN introduced each participant to the visual arts-based task they would complete prior to the second interview. Instructions for the task and sample drawing templates were also sent to parents by email.

Activity 2: Visual Arts-Based Task

Participants completed the visual arts-based task outside of the virtual research setting, each generating one visual response to the prompt ‘on a good pain day, I…’, and a second in response to the prompt, ‘when my pain gets worse, I…’. (Mah et al., 2020). Participants were asked to use blank white paper and any drawing utensil they enjoyed drawing with (e.g., wax crayons, markers, paint, pencil crayons). Two of the three participants chose to paint their responses to the prompts that were provided, and one chose to draw. Photo elicitation was described and offered as a less physically taxing option for responding to the prompts, but no participants chose to engage in the task in this way. Once complete, the drawings or paintings were digitally scanned or photographed and emailed to KN by each participant’s parent. Visual data were digitized for later analysis.

Activity 3: Elicitation Interview

In preparation for the second interview, KN iteratively tailored a provisional interview guide to each participant. Questions and probes for the second interview were informed by the team’s knowledge of each participant (e.g., their likes and dislikes) and tailored to the participant’s visual arts-based product (drawings or paintings). In this way, the visual data served as an elicitation device through which to generate meaningful insight into the experience of chronic pain from the perspective of the child. KN opened each elicitation interview by asking the participant to describe how they had visually represented ‘a good pain day’ and ‘when my pain gets worse’. This was followed by probing questions and dialogue concerning specific aspects of the visual representation, for example, those that resonated with KN’s own experience of living with chronic pain or that were unexpected based on KN’s earlier interactions with the participant. By describing the intended meaning of their representations of pain, participants were engaged in the first stage of co-analysis and interpretation of their own drawing or painting in situ (Teachman & Gibson, 2013; Drew & Guillemin, 2014; Mah et al., 2020). Both sets of interviews were transcribed for later analysis.

Data Management and Analysis

Data analysis in qualitative inquiry is an iterative, ongoing process that occurs concurrently throughout the research process including data generation and through which analytic insights gained early-on inform subsequent stages of data generation, analysis, and interpretation (Eakin & Gladstone, 2020; Green & Thorogood, 2013). Data for this study consisted of the interview transcripts, digitized copies of the visual arts-based products, detailed post-interview fieldnotes and reflexive memos maintained by KN, and analytic memos maintained by the research team (Birks et al., 2008; Guillemin, 2004a, 2004b; Kvale, 1996). Data were imported into NVivo data management software (Release 16.1), which provided a digital platform to support analysis.

In keeping with our understanding of ‘child voice’, we treated and accounted for children’s data of their chronic pain experiences as complex constructions. Specifically, we regarded participant data as always produced within social and power relations, situated within broader sociopolitical context, and mediated by the research process (Facca et al., 2020; Spencer et al., 2020; Teachman & Gibson, 2018). Moreover, while the visual arts-based products were not produced in the virtual research space, they were nonetheless mediated by the research process and by the “absent but present” researcher (Gibson, 2005; Teachman & Gibson, 2018). In addition to engaging participants in a co-analysis of their data during the elicitation interview, this early analysis was elaborated through subsequent and robust team-based analysis to ensure that multiple perspectives and interpretations of all data (i.e., visual arts-based product, interview transcripts, reflexive memos, analytic memos) were considered alongside each other (Angell et al., 2015; Drew & Guillemin, 2014; Mitchell et al., 2011). This movement between co- and team-based analysis was significant to our interpretive process in that it enabled us to not only consider several unique interpretations of the data, but to bring these interpretations into conversation with one another and consider how each informed our collaborative understanding and analysis of the larger dataset.

Throughout all analytic activities, we leveraged our own reflexivity as an invaluable analytic tool, a resource that drew upon our team’s internal resources, knowledge, and experience (i.e., KN’s prolonged experience of living with chronic pain, the research team’s extensive clinical and research experience in the fields of childhood health, rehabilitation, and pain) for the unique insights it could provide in relation to the phenomena of interest (children’s chronic pain) (Eakin & Gladstone, 2020; Finlay, 2002; Mauthner & Doucet, 2003). The level of reflexivity with which we approached this work was necessary, enabling us to consider the ways our distinctive positionalities influenced how we approached the topic of study, interpreted the data, and told the story of the data. We elaborate on the ways in which we leveraged reflexivity as an analytic tool after we introduce and discuss our substantive results.

Preliminary Results

We briefly describe the study sample before presenting interpretive narratives for each participant and two intersecting analytic threads which we constructed through our analysis of the data across participants. Preliminary results, while modest due to the scale of the study, demonstrate the potential of this novel visual arts-based methodology to generate rich data with children concerning their experiential knowledge of chronic pain.

Participant Narratives

Three children participated in this study, two of whom were siblings (Simran and Kaia; pseudonyms) and lived in the same two-parent household in an urban center in Ontario, Canada. The third participant (Sarah; pseudonym) also lived in a two-parent household in an urban center in Ontario, Canada. While all three participants identified as girls, they each uniquely indicated their belonging to racial/ethnic communities based on the identity categories provided to them in our study demographic form: one participant identified as Mixed Race; one participant identified as having West Asian/Middle Eastern and East Asian descent; and one participant identified as having South Asian descent. Participants were not required to share their clinical diagnosis (if any) with the research team. The type of pain reported by the participants included headaches, stomach pain, and gastro-intestinal upset and pain.

Simran

Simran was 7 years old at the time of the study. She described her favourite pastime as playing imaginary games with imaginary friends. She shared that she had a passion for nature, especially flowers and other plants. Simran experienced chronic stomach pain and occasional headaches. She explained that it was difficult for her to identify what caused her pain to flare-up, or to improve, as her pain didn’t seem to follow any pattern.

When asked to describe her painting of a ‘good pain day’ (see Figure 1), Simran explained that she painted things that bring her joy since this is how she feels on a day when she has relatively little pain (“just a teeny, teeny bit”) or is able to distract herself from the pain she does have (for example, through play or schoolwork). She painted a flower with diamonds for petals and what she described as a soft, welcoming wind. She explained that she added smiling faces to the flower and the wind because a good pain day reminded her of being happy. Nature, flowers, and a day without pain flares were “happy things” according to Simran, helping her to feel hopeful for a good day at school and, if it lasted, a good week as well.

Figure 1.

Simran's representation of a 'good pain day'.

Simran represented a day when her pain was worse than usual with a fire that she described as burning out of control (See Figure 2). The fire wore an angry expression and breathed “cells of fire” which Simran described as helping the fire to grow and become more powerful. A small person speaking the words “I’m hot” stands beside the fire, which looms large over her. Simran stressed the relative size of the fire compared to her representation of herself, explaining “the fire is a giant...when it grows, my pain grows”. Simran’s account of this pain was deeply enmeshed with expressed feelings of fear. She explained that the fire she painted to represent her pain could be replaced with any “scary thing”, such as a dinosaur, dragon, or monster. For Simran, her pain and fear were inextricably linked, with her pain evoking fear, and fear worsening her pain. To illustrate, she explained “[fires] can make me a little scared, and then my tummy starts hurting when I get scared. But then if my tummy hurts, I think...I think of being scared.”

Figure 2.

Simran's representation of a day when her pain was worse than usual.

Kaia

Kaia was 9 years old at the time of the study. She enjoyed playing the piano, reading, and spending time outdoors in nature. Just like her sister, she had a special love of flowers. She experienced stomach pain that fluctuated throughout the day and was often accompanied by nausea. Kaia reported experiencing this pain for as long as she could remember.

In representing a ‘good pain day’, Kaia painted trees, flowers, and a shining sun. She likened this ‘good pain day’ to a peaceful day outside, explaining that she “drew a little forest because it makes me feel like I’m out in nature and I’m just having a lot of fun, and I just feel great!” She explained that a large part of a good pain day for her meant being distracted by nature’s sights, smells, and sounds. On these days, Kaia was not necessarily pain-free, but instead experienced ‘regular pain’ that she could cope with throughout the day. Kaia shared that pain was a part of her daily life but there were some days that were worse than others.

Kaia represented a day ‘when my pain worsens’ as a wilting blue flower, explaining that wilting flowers made her feel down and unhappy, just as she felt when experiencing pain. Kaia shared that when she would experience worsening pain, she wouldn’t feel annoyed or angry about it at first. But as this worsening pain would approach the three-day mark, she would begin to feel frustrated. She explained “sometimes when [pain] happens a few days in a row, I think to myself, why? Why does it have to be me with the pain, or why do I have to have pain? Why can't I just not have pain?“. While Kaia described ‘bad pain days’ as causing suffering, she said they also helped her appreciate her good days and cope with days that were even worse.

Sarah

Sarah was 13 years old at the time of the study and attending online school due to the Covid-19 pandemic. She has a younger sibling. Sarah enjoyed drawing, which prompted her interest in the study. She described experiencing pain in her stomach, bowel, and head. At times, Sarah reported, she would experience an increase in pain that could be triggered by any number of things including light, sound, hunger, or bowel-related symptoms.

When asked to represent a day ‘when my pain gets worse...’, Sarah drew three simple line drawings, one of her in bed which she labeled ‘lay down’, another of her sitting in front of an empty plate with a troubled expression on her face labeled ‘don’t feel like eating’, and a close-up of her face with eyebrows furrowed, a downturned mouth, and a squiggly line over her head labeled ‘am in a bad mood’. She also described feeling annoyed, easily irritated, and not in the mood to socialize on ‘bad pain days’, explaining that socializing was just too much work. Of her ‘bad moods’, Sarah explained that “I’m definitely not happy about being in a bad mood. I would like to change it, but I don’t really know how. Because like when you’re in pain you’re gonna be in a bad mood and that’s that.”

When asked to represent a ‘good pain day’, Sarah drew four simple line drawings, one labeled ‘draw’ showed her sitting on the ground drawing, a second labeled ‘walk’ in which she was walking outside with the sun shining down on her, a third labeled ‘eat’ in which she was sitting at a table with a plate full of food, and the last labeled ‘talk to friends’ of her facing another girl. In all these drawings, Sarah represented herself with a big smile on her face. When asked to describe her drawing, Sarah explained,

[…] when I’m feeling good, like, I like to draw, so I’ll draw. Sometimes with a bad pain day, sometimes walking is difficult, so that’s why I put ‘walk’ [on a good pain day], also I don’t feel like eating at all when it’s bad, so, like, my appetite will be more. And ‘talk to friends’, I don’t like to socialize as much when I am in pain, because it just puts me in a bad mood.

Interestingly, in offering this explanation of her drawing, Sarah contrasted nearly all that she was able to do on a ‘good pain day’ with what she was not able to do or didn’t like to do on a day when her pain was worse.

Analytic Threads

We present two interconnected analytic threads as a modest example of the type and depth of data about living with pain that can be produced with young people via the arts-based methodology piloted in this study.

Pain is Like Nature

Kaia, Simran, and Sarah all compared their pain metaphorically with aspects of nature. During their interviews, they each referenced nature in explaining how they understood pain on a good day as compared to a day when their pain was worse than usual. As a prominent example, Sarah drew many small pictures in her representation of a ‘good pain day’, one of which showed her walking outside. When asked about this drawing, and whether nature was meaningful to her understanding of a good pain day, she explained that this drawing was meant to represent that she could walk more, and outside, on days when she is experiencing less pain. She contrasted this with days when her pain was worse, and she could walk very little and only indoors. Sarah also likened her pain, or how she felt when she heard the word ‘pain’, to the sun’s hot rays. Mid-interview, Sarah asked KN if she could use Zoom’s annotation feature to illustrate what comes to mind for her when she thinks of pain, explaining:

Sarah: The colour red. […] But it kind of looks like the sun, and it has, like, can I annotate on this thing? Just imagine like a full circle, and it goes like this [draws a circle] and then the background is black and it kinda looks like a ball of light, like this [fills the circle in with red] and it’s orange as well… here [adds some orange to the red circle]. And then the background is blue...here [fills in the space surrounding the red circle with blue], and when it goes further away it’s black… except it’s a background.

KN: Okay. So, it’s kind of like a red blob with all these different extending red arms. And then the background all fills in to be a dark blue and black.

Sarah: Yeah… kind of like the sun.

At times when Sarah’s pain was especially prominent, she explained, it was like the sun, with a bright hot center, and a reach extending outward. As her pain lessened, it faded to a dark blue-black backdrop. But it never disappeared completely.

Pain as Both Good and Bad

Participants expressed understandings of pain as both ‘good’ and ‘bad’. Kaia drew on a nature metaphor to explain how her pain was at once ‘good’ and ‘bad’:

KN: I’m curious to know why you drew nature for a good pain day and a bad pain day…

Kaia: Well because I think nature represents many different things. It can represent good things and bad things...Like a good thing is that trees give us oxygen. A bad thing is that wildfires can hurt us, plants, humans, animals. So, there’s lots of different ups and downs about nature.

KN: And do you believe that’s very similar to pain?

Kaia: Yeah…pain can sometimes be good when it hurts…because like when it's bad...it helps you to learn how to cope with it. And the next time if you get something bigger, it’ll be easier than last time.

For Kaia, both pain and nature were at once ‘good’ and ‘bad’. What Kaia described as minor, or “cope-able” pain, elsewhere helped her learn how to manage and live with the pain flare-ups that would inevitably occur down the road. Similarly, while flare-ups of pain (i.e., temporary periods of intense pain) were difficult to experience in the moment, they helped Kaia cope with the “something bigger” that would inevitably occur. Kaia’s ‘bad pain days’ helped her cope with worse days. They also helped her appreciate her good days.

Across all three accounts, participants can be seen resisting binary thinking that equates the absence of pain with ‘good’ and the presence of pain with ‘bad’. Instead, the combination of visual representations with oral dialogues illustrates the participants’ sophisticated and novel use of nature metaphors (fire, wind) to show and explain something (pain) that is ‘out of their control’. There is a suggestion that these young participants are making sense of pain (likened to nature) not by trying to domesticate or control it but rather letting it pass through its cycle. To invoke a further metaphor, the data brings forward a sense that these young participants had internalized strategies that involved ‘weathering the storm as it passes through’.

The Promises of our Approach to Researching Children’s Experiences of Chronic Pain

Providing Space for Reflection

In designing this study, we used a series of short data generation activities. While the decision to space data generation out over a series of activities was motivated by patient comfort, this decision became an invaluable opportunity for reflection. As noted by others, creative research methods offer young people the time and space to contemplate the topic of interest and to build on their ideas in the moment while removing the expectation of an immediate or fully developed response (Angell et al., 2015; Bowman & Mah, 2024; Gauntlett & Holzwarth, 2006; Kalenjuk et al., 2023). In this study, we found that the time and space for reflection afforded by our creative research methods, combined with the spacing out of data generation over a series of activities was significant to our approach, providing ample opportunity for deep reflection regarding the topic of study. As we discuss, this time and space was not only of benefit to participants, but also to our research team who became able to slow down the earlier stages of our team-based analytic process.

When the COVID-19 pandemic required us to reimagine our study design, we carefully considered the question of whether it would be ‘best’ to have participants create their visual arts-based product with us in the virtual space of the study, or on their own, outside of the virtual space between the first and second virtual interviews. In our own past research, we have made the decision in some instances to have participants create the visual product in our presence (Mah et al., 2021). In other instances, we have opted not to be present (Teachman & Gibson, 2018). Even in those instances in which we were not physically present when the arts-based outputs were created, we have noted the ways we have been implicated in those outputs even in our absence (e.g., in what participants chose to represent or leave out, in how they chose to represent themselves to us as their “absent but present” audience) (Gibson, 2005; Teachman & Gibson, 2018). Knowing we would mediate the knowledge generated through this study regardless of our physical presence in the research space, we made the methodological and creative choice to have participants create their visual arts-based data between data generation sessions. This would provide them both the temporal space (time between sessions, no time-limit on the activity) and physical space (space away from the research team and virtual research environment) to reflect on what they were being asked to represent without the burden of time (e.g., the expectation of an immediate response) (Bowman & Mah, 2024; Kalenjuk et al., 2023) or other pressures that might be exerted by our physical presence (e.g., a feeling of being watched, having their output judged as ‘good’ or ‘bad’). This temporal and physical space afforded participants the opportunity to consider what ‘good’ and ‘bad’ pain days looked like for them, and how they wanted to represent this to their imagined audience through their drawings and paintings, and to KN when they next met (Gibson, 2005). For example, Simran explained that she produced both her paintings on a day when she was experiencing very little pain. When KN asked if her paintings would have looked different had she created them on a ‘bad pain day’, she responded matter-of-factly, “No. Because I already thought about what I was going to draw for a good pain day and a bad pain day before.” For Simran, creating her paintings was not only a creative process but also an intentional process that required forethought (e.g., about what she wanted to represent) and planning (i.e., to do this activity on a ‘good pain day’). Notably, the spacing out of data generation activities across time also became a reflexive opportunity for KN and the team, providing space to engage in extensive dialogue and reflexive memo writing (Eakin & Gladstone, 2020; Finlay, 2002; Mauthner & Doucet, 2003), tasks that were invaluable to our analytic process (as elaborated in this section). In this way, the slowing down of data generation resulted in a slowing of our analytic process, providing time between sessions for KN and other members of the team to become deeply familiar with each participant’s data, probe beyond the surface meaning of the data, and consider relations between the data.

Building Trust, Co-Producing Knowledge

The interview guide that was developed prior to the elicitation interview was not intended to be rigid or fixed, but rather to respond to the shifting understanding of chronic pain that was being co-produced by the participant and KN in the research setting. The second interview was thus an opportunity for the participant to work with KN to co-construct an evolving analytic understanding of their own chronic pain. This excerpt illustrates how Sarah and KN co-produced an understanding of the nature of chronic pain, and Sarah’s experience of it, through the elicitation interview.

KN: So then, when you hear the word ‘pain’, does anything different come to mind? How do you feel when you hear the word ‘pain’? Instead of [how do you think when you hear the word ‘pain’], how do you feel?

Sarah: Um. You know like how when you touch something you can kinda still feel it on your fingers and it like, yeah? It’s kind of like that but with where the pain is, a little bit...if I really think about it [participant's emphasis]. But if I just hear the word ‘pain’, I don’t really feel anything.

KN: Like you don’t—like, do you feel… happy? Do you feel… surprised? Do you feel… Nervous?

Sarah: No.

KN: No? You feel, like, neutral?

Sarah: Yeah [nods].

KN: Just hearing the word ‘pain’.

Sarah: Mmhm.

KN: And we were talking about how, like when you touch something, I kind of imagine, when you were saying that first scenario - when you touch something hot, and you still feel the heat on your finger, you know that feeling? Or when you’re freezing cold outside, and your toes are still cold for a minute after coming inside and you still feel that lingering feeling. Is that what you mean, like, in terms of pain?

Sarah: No like if you just like touch a chair, and you take your hand off of it, you can still kind of feel like it was just there?

KN: Okay [nods].

Sarah: Except that’s like where the pain is supposed to be, so it doesn’t necessarily hurt, you can just feel that like pain is there, but it doesn’t necessarily hurt at the moment.

KN: Gotcha.

Sarah: If that makes sense?

KN: [nods] Yeah, so almost like, like, tender.

Sarah: [makes grimace]

KN: Or like, like bothered?

Sarah: A little bit.

KN: A little bit? Okay. I think I understand. Just like something has happened, something was meant to be there.

Sarah: Mmhm. Or like an elastic has been on your wrist for a really long time and when you take it off you can still kind of feel like it’s there?

KN: Okay. [nods] I get it.

In the question that begins the above excerpt, KN attempts to steer Sarah toward sharing the feelings she experiences when she hears the word ‘pain’. Sarah responds by describing how hearing the word evokes a sense of pain as a presence in her body, something that is “just there”. As KN attempts to probe by naming emotions, Sarah responds with a firm “No”. KN then adjusts and follows Sarah’s lead, attempting to gain a deeper understanding of Sarah’s meaning. She probes whether what Sarah senses is like “when you touch something hot, and you still feel the heat on your finger”, or perhaps “when you’re freezing cold outside, and your toes are still cold for a minute after coming inside” then asks if the pain Sarah refers to could be described as “that lingering feeling”. To Sarah, this isn’t quite right, and so she attempts to describe her thinking again but differently this time, like “if you touch a chair, and you take your hand off of it, you can still kind of feel, like, it was just there?” The exchange continues like this, with Sarah and KN negotiating a shared understanding of Sarah’s embodied experience of pain as something that is always there, even when it isn’t, an understanding that KN acknowledges with a nod and “I get it”.

This excerpt has been a source of analytic interest for our team. First, it should be noted that Sarah’s nuance description of embodied pain aligns closely with the seminal work of Drew Leder (1990) whose scholarship introduced the notion of pain as an absent presence. Sarah’s sophisticated explanation makes it clear that being a child does not preclude the development and expression of complex understandings of lived experiences, such as those related to pain. The above quote also prompted our teams’ considerations of whether the meaning-making negotiation that occurred in the interview space and that resulted in this collaborative meaning-making would have been possible if not for the relationship that was established and the trust that was built between Sarah and KN in the first interview (Caldairou-Bessette et al., 2020; Teachman et al., 2018). For example, would Sarah have challenged KN’s ‘adult authority’ in the moment, disagreeing with her interpretations, and persisting to arrive at this shared understanding if not for the familiarity they had developed in the first interview? How did KN’s acknowledgement that she and Sarah shared the experience of living with chronic pain shape the interview? Did this disclosure open space for shared dialogue and meaning-making so that Sarah felt comfortable elaborating on KN’s attempts to clarify, for example, “that lingering feeling”? How would the co-production of knowledge differ if an interviewer without lived experience of chronic pain had been involved? These questions are critical points of reflexivity that have allowed us to gain insight into factors that mediate the co-production of data, and the potential of our methods to yield new insights into children’s experiences of chronic pain from their own perspectives.

Visualizing Social Influences on Children’s Understandings of Chronic Pain

From the outset of the study, we conceptualized visual data not as offering a window or unobstructed view onto the world of the participant as is presumed by simplified constructions of ‘the child’s voice’ (Facca et al., 2020; Teachman & Gladstone, 2020), nor as data that ‘speak for themselves’ (Yates, 2010). Rather, in keeping with the constructivist groundings of the study, we regarded the visual data as a visual record of how the participant understood their pain and chose to represent it at the time of the study, as well as what they chose to include (or leave out) of their final visual product (Guillemin, 2004a; Mah et al., 2020; Prosser, 2011; Rose, 2016). As the study progressed, we took notice of the many ways the drawings and paintings provided a glimpse into the ways participants took up particular social discourses of pain (i.e., patterned ways of think about and coming to understand pain). As a prominent example, Simran’s metaphorical representation of a ‘bad pain day’ as a fire burning out of control provides us insight into the ways that children reproduce socially prevalent ways of expressing their pain, relying on the communicative power of metaphor to make the subjective, abstract, and invisible experience of pain knowable to others (Munday et al., 2020; Venkatesan et al., 2022). Beyond the specific substantive knowledge offered by this analysis, our methodology has enabled us to visualize and thus gain insight into the ways our young participants have already begun to take up and internalize social meanings of pain (e.g., as both good and bad, as fire burning out of control) and how they ‘should’ respond when in pain (e.g., with fear, by looking on the bright side, or for the ‘good’ in a bad situation). Moreover, these insights have advanced our team’s theorization of what visuals do, including the ways they reproduce conventional understandings of health phenomenon while circulating these understandings anew, to be taken up by yet another audience.

Our methodological approach has the potential to support shifts in how knowledge has traditionally been generated in the field of childhood pain (i.e., through methods that involve children directly rather than privileging adult perspectives). In keeping with child rights activists and scholars who remain committed to working with children and championing their knowledge as knowledge that is worthy of inquiry in and of itself (Caes et al., 2016; McGrath, 2011), our methodological approach requires researchers to (re)imagine the place of children in research, to acknowledge the legitimacy and importance of their knowledge, and to shift how children are invited into research. It calls on researchers to engage children in research as ‘knowers’, who have unique and valuable insight into their own experiences, and the capacity to share this insight in research (Clark & Statham, 2005; Grover, 2004; Kortesluoma et al., 2003; Mah et al., 2021; Morrow, 2008). By shifting how children are regarded in research, and how knowledge is generated with them, our approach to research also holds great substantive promise, particularly in relation to attending to the nuance and complexity of what we know about children’s chronic pain. Areas of future inquiry suggested by our findings include the present absence of pain (i.e., the notion that pain is always there, even when it is not, as suggested by Sarah), the reproduction of common metaphors of pain (as illustrated by Simran), and the internalization of particular ways of thinking about pain and related ideas about how children in pain ‘should’ behave (e.g., looking for the ‘good’).

Future Directions

This study was framed within a social constructivist paradigm of inquiry. While this framing yielded meaningful yet modest substantive findings, this preliminary work suggests that employing our approach within a critical social paradigm of inquiry will allow us to extend our analysis, for example by attending more explicitly to how children take up and internalize pervasive social discourses of pain, and how this internalization then shapes how children understand, experience, and express their own pain (Mah et al., 2021). For example, engaging a critical social science perspective (Eakin et al., 1996), would allow us to consider the taken-for-granted assumptions underlying the field of childhood pain, to consider the role and distribution of power across the research process (e.g., between adult-researchers and child-participants), and acknowledge the two-way relationship between individuals and their contexts (e.g., social, political, economic contexts). Regarding visual materials specifically, engaging a critical social perspective would allow us to attend more closely to how we theorize the visual products of our research, including the ways they are embedded in the social world and only understandable and interpretable when that context is considered (Rose, 2016). This shift in paradigmatic perspective would enable us to deepen our analysis of visual materials to consider their sociopolitical embeddedness while also considering what those visual materials do when put out into the world (e.g., in published papers, conference presentations). As we continue to move this work forward through a critical social lens, we will be tasked with further theorizing what images do, and how they make intersecting social identities—such as gender, race, class, generation, age, dis/ability, among others—visible in relation to the broader systems of oppression that shape a person’s experiences, and by extension, their artistic expression (Bowman & Mah, 2024; Rose, 2016).

Conclusion

We have outlined a virtual arts-based approach to exploring the experiences of children living with chronic pain, and the meanings they attribute to those experiences. Our pilot study supports the body of evidence demonstrating that ‘even’ young children have knowledge, expertise, and insights that should be elicited to expand understandings of children’s pain. Children hold sophisticated views of their own health experiences and are able to communicate these when study methodologies support the topic of inquiry as well as participant needs and modes of communication. Our substantive findings are modest due to the pilot nature of the study and our sample size. Yet, they are compelling, yielding new and meaningful substantive insights into children’s chronic pain from their own perspectives, and suggesting future lines of substantive inquiry and methodological development.

Footnotes

Acknowledgement

The authors would like to thank the participants without whom the research, and ideas put forth in this paper, would not have been possible.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Katie Mah

Kristina Nazzicone

Danica Facca

Gail Teachman

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