In this paper, we draw on an illustrative case example from a critical qualitative arts-based study to demonstrate how conceptualizing concussion, and young people, ‘otherwise’, enabled the co-production of a more nuanced and complex understanding of the experience of pediatric concussion from the perspective of young people (Mah, Reference Mah2021). Specifically, we draw on our critical analysis and interpretation of illustrative data co-produced with study participants Rose, Vincy and Ava (pseudonyms), to demonstrate a central finding of the study, namely, an ‘at risk’ experience of concussion. We draw on this finding to demonstrate how re/imagining what concussion ‘is’, and who young people ‘are’ in relation to concussion, enabled us to envision new ways of ‘doing’ pediatric concussion that is oriented to both clinical and research practice. This act of re/imagining required us to approach our research differently, to think of young people in other terms and to include them in research in ways that acknowledge their expertise as ‘knowers’.
In proposing a re/imagining of the field of pediatric concussion, we do not signal that current ways of doing pediatric concussion are necessarily or uniformly bad or wrong (Nixon, Yeung, Shaw, Kuper, & Gibson, Reference Nixon, Yeung, Shaw, Kuper and Gibson2017). Rather, we draw from Gibson, Nixon, and Nicholls (Reference Gibson, Nixon and Nicholls2010) who stress that prevailing ways of knowing and understanding embedded in health practices ‘constitute just one way’ of approaching practice (p. 99). Following in this tradition, our aim in this paper is to demonstrate how the field of pediatric concussion is constrained by conventional ways of knowing and discourses, before inviting health and rehabilitation practitioners and researchers to engage a critical perspective and move beyond this ‘one way’ of approaching practice. To achieve this aim, we (a) contrast conventional ways of knowing in the field (i.e., biomedicine, positivism) with our critical approach to research, (b) outline the ways in which biomedical discourse constrains who young people ‘are’ in relation to concussion, before (c) presenting an illustrative case example from our empirical work to demonstrate how we study concussion ‘otherwise’. We conclude this paper by discussing the implications of our critical analysis for clinical and research practice.
Pediatric Concussion: A Field of Practice Dominated by Particular Ways of Knowing
In approaching this topic of study, we are acutely aware of the pervasiveness of biomedicine and positivist science in the health and rehabilitation sciences, and the role of both in constructing dominant ways of thinking and knowing about health-related phenomena and the people this affects (Gibson, Reference Gibson2016; Hammell, Reference Hammell2006; Phelan, Reference Phelan2011). We use the term ‘biomedicine’ to denote the predominant medical theory, practice and profession in Western nations that emphasizes biology, pathology and the scientific method (Gibson, Reference Gibson2016; Hahn & Kleinman, Reference Hahn and Kleinman1983). Our specific concern is with biomedicine’s particular way of understanding the body and disease. With its near-singular focus on pathology, the person within biomedicine occupies a passive role, constructed as the object that disease inhabits (Armstrong, Reference Armstrong2009; Jewson, Reference Jewson1976). This construction of the person-as-object is congruent with how bioscience is conducted, grounded in the positivist paradigm of inquiry and guided by the scientific method.
Central to positivism, the paradigm commonly guiding research in the field of pediatric concussion (Mah et al., Reference Mah, Gladstone, King, Reed and Hartman2020), is the pursuit of knowledge through a one-way process, whereby the neutral scientist collects data from the research subject (Green & Thorogood, Reference Green and Thorogood2018; Lincoln, Lynham, & Guba, Reference Lincoln, Lynham, Guba, Denzin and Lincoln2011). Through this one-way process of data collection and diligent application of the scientific method, the positivist scientist uncovers the objective ‘truth’ of health phenomena. The pervasiveness of biomedicine, positivism and the scientific method in the field is concerning to our research team, yet not surprising. The dominance of this way of knowing is so entrenched in healthcare that it is often unrecognized as a particular way of knowing (Gibson, Reference Gibson2016; Holmes, Murray, Perron, & Rail, Reference Holmes, Murray, Perron and Rail2006) and is thus taken-for-granted as the only way of knowing. Our concern arises first because biomedicine cannot fully account for the complexity of health phenomena, and second because its dominance as a way of knowing renders other ways of knowing unthinkable (Gibson, Reference Gibson2016), particularly ways of knowing put forward in this paper. In what follows, we outline our paradigmatic orientation, paying particular attention to how this has allowed us to approach pediatric concussion ‘otherwise’.
Approaching Pediatric Concussion ‘Otherwise’
We committed to approaching our study topic, ‘otherwise’, from a critical social paradigm of inquiry. We were motivated by concerns that we approach young people differently, not as objects inhabited by disease. We were also concerned that conventional ways of knowing on their own fail to account for the complexity of pediatric concussion as a health phenomenon.
Importantly, the term ‘critical’, as we employ it is not meant to infer disapproval, judgment or negativity of the sort implied by the term in its colloquial usage. Rather, critical refers to a very specific way of thinking about how we study the world, by inquiring ‘against the grain’, questioning how we know what we know and deconstructing what is assumed to be ‘true’ about health phenomena (Eakin, Reference Eakin2016; Eakin, Robertson, Poland, Coburn & Edwards, Reference Eakin, Robertson, Poland, Coburn and Edwards1996; Kincheloe & Mclaren, Reference Kincheloe, Mclaren, Hayes, Steinberg and Tobin2011; Nixon et al., Reference Nixon, Yeung, Shaw, Kuper and Gibson2017). The aim of this deconstruction is to move beyond dominant ways of understanding, to create space for new ways to see what is possible (Eakin et al., Reference Eakin, Robertson, Poland, Coburn and Edwards1996). Our critical approach was guided more specifically by post-structuralism, wherein there is no one unchanging reality or ‘truth’ to uncover. Rather, multiple competing realities exist, constructed through talk, texts and media. What is ‘known’ about health phenomena is an effect of discourse, or pervasive ways of thinking, talking about and coming to understand phenomena in the social world (Belsey, Reference Belsey2003; Lincoln et al., Reference Lincoln, Lynham, Guba, Denzin and Lincoln2011; Schwandt, Reference Schwandt and Schwandt2015).
In our work, we use discourse to refer to (a) patterned ways of thinking, speaking and acting (e.g., a discourse of pediatric concussion), (b) the relationship between language (i.e., what one says) and practice (i.e., what one does) and (c) the effect this has in the world (e.g., on the limits of what can be said and known about a particular phenomenon) (Foucault, Reference Foucault1980; Funk & Stajduhar, Reference Funk and Stajduhar2009; Mills, Reference Mills2004; Rose, Reference Rose2016). We were motivated to understand how prevailing discourses concerning who young people are, and what concussion is, shape young people’s lives and their understandings and experiences of pediatric concussion (Foucault, Reference Foucault1980).
In the next section, we describe discourses that construct concussion, and young people, in particular ways, and pervade what we know in the field of pediatric concussion. We then outline how we included young people in research, differently, how this led us to think ‘otherwise’, producing new knowledge about pediatric concussion, not only as a biomedical injury, but also as a social phenomenon that young people come to know and make sense of in the social world.
The Research Problem
Biomedical discourse constrains who young people are in relation to concussion
Over the past two decades, pediatric concussion has been named a public health crisis due to steadily increasing rates of injury, concerns regarding the potential severity of symptoms and long-term consequences to the brain (Harrison, Reference Harrison2014; Lumba-Brown et al., Reference Lumba-Brown, Yeates, Sarmiento, Breiding, Haegerich, Gioia and Timmons2018b; Mathieu, Ellis, & Tator, Reference Mathieu, Ellis and Tator2018; Wiebe, Comstock, & Nance, Reference Wiebe, Comstock and Nance2011; Zemek et al., Reference Zemek, Grool, Rodriguez Duque, DeMatteo, Rothman, Benchimol and Macpherson2017). In response, there has been an urgency in scientific and clinical communities to understand how best to prevent and manage this common health concern. Despite this increased attention, concussion as a concept has rarely, if ever, been taken up and questioned in the field of pediatric concussion. That is, little attention has been directed toward understanding what concussion ‘is’ (e.g., what concussion looks like, how concussion is experienced by young people, the social and political forces and discourses shaping how concussion is understood), or how young people are regarded in relation to it. The result is a decidedly simplistic biomedical understanding of pediatric concussion and a narrow base of knowledge from which to inform the individualized care that is called for in clinical practice (Gioia, Reference Gioia2015; Lumba-Brown et al., Reference Lumba-Brown, Yeates, Sarmiento, Breiding, Haegerich, Gioia and Timmons2018a, Reference Lumba-Brown, Yeates, Sarmiento, Breiding, Haegerich, Gioia and Timmons2018b; McCrea & Manley, Reference McCrea and Manley2018; Reed et al., Reference Reed, Zemek, Dawson, Ledoux, Provvidenza, Paniccia and Yeates2019).
In addition to being variably named a public health ‘crisis’, ‘concern’ and ‘priority’ (Harrison, Reference Harrison2014; Lumba-Brown et al., Reference Lumba-Brown, Yeates, Sarmiento, Breiding, Haegerich, Gioia and Timmons2018a; Wiebe et al., Reference Wiebe, Comstock and Nance2011), pediatric concussion is defined by and centrally organized around its pathophysiology and clinical signs and symptoms. For example, the Guidelines for the Prevention and Management of Pediatric Concussion define concussion as ‘a condition that exists along a clinical pathological spectrum of traumatic brain injury…result(ing) in nonspecific physical, cognitive, sleep and emotional symptoms’ (Reed et al., Reference Reed, Zemek, Dawson, Ledoux, Provvidenza, Paniccia and Yeates2019, p. 12). Beyond this explicit definition, concussion is implicitly constructed as a threat to young people’s short and long-term health, and participation in school and sport (Lumba-Brown et al., Reference Lumba-Brown, Yeates, Sarmiento, Breiding, Haegerich, Gioia and Timmons2018a; Reed et al., Reference Reed, Zemek, Dawson, Ledoux, Provvidenza, Paniccia and Yeates2019). Common across biomedical constructions of concussion is the central position of the injury and the peripheral position of young people in relation to concussion. In this, young people become the objects of concussion: those whom concussion happens to.
The above biomedical constructions of what concussion ‘is’ and who young people ‘are’ in relation to concussion may appear familiar to health and rehabilitation scientists and practitioners. However, such biomedical constructions are not self-evident, or the only way to think about concussion, and young people. Rather, they are based on assumptions that are problematic in two important ways. First, by framing concussion in decidedly narrow terms, limits are placed on how concussion as a concept can be studied, and the knowledge and practices that result. For example, by thinking of concussion as the primary concern, the potential exists for the young person to be considered only secondarily, and in relation to the injury to the brain, rather than to the whole of the person they are. A potential consequence of this way of thinking is a perpetuated notion of the passive and peripheral patient, and their continued exclusion from conversations that concern them. Second, what concussion ‘is’ has been defined almost exclusively by adult experts, while young people have been excluded from producing knowledge about concussion or have been included only in marginal roles (for an in-depth review of the pediatric brain injury knowledge base and how the perspectives of young people have largely been excluded from knowledge production, see Mah et al., Reference Mah, Gladstone, King, Reed and Hartman2020). When these implicit assumptions, the limits they impose, and the consequences they carry are considered in the context of this special issue’s theme, the question becomes: how can we bring young people into pediatric concussion practice as people rather than as passive objects of study? To begin to answer this question we felt a pressing need to re/imagine who young people are in relation to concussion, what they can contribute to its study and the implications this ‘thinking otherwise’ might have for pediatric concussion practice.
Re/thinking who young people ‘are’ in relation to concussion
Our use of the term ‘young person’ rather than ‘child’, ‘adolescent’ and/or ‘youth’ when referring to members of a younger generation signals our move away from the naming practices of biomedicine, inspired as they are by developmental models of childhood, and toward those of the branch of sociology known as childhood studies. Developmental models, which construct childhood as a preparatory phase for adulthood, view children as incomplete adults or ‘human becomings’ (James, Jenks, & Prout, Reference James, Jenks and Prout1998; James & Prout, Reference James and Prout1997; Qvortrup, Reference Qvortrup, Close and Collins1985). In contrast, childhood studies construct young people as human beings who, rather than being valued for the future adults they will become, are valued for who they are in the present, as social beings in their own right, who influence and are influenced by their social worlds (Brady, Lowe, & Olin Lauritzen, Reference Brady, Lowe and Olin Lauritzen2015; James et al., Reference James, Jenks and Prout1998; James & James, Reference James and James2012; James & Prout, Reference James and Prout1997). We have engaged this view of the young person in our own empirical work, which we introduce in the section that follows.
Studying the Research Problem ‘Otherwise’: An Illustrative Case Example From a Critical Qualitative Arts-Based Study
Introduction to the study
Guided by the methodological and philosophical writings of Michel Foucault (1926–1984) and the key concepts of discourse, power/knowledge and the subject (Foucault, Reference Foucault1971, Reference Foucault1980, Reference Foucault1982a, Reference Foucault, Dreyfus and Rabinow1982b), we used a critical arts-based research design (Guillemin, Reference Guillemin2004a, Reference Guillemin2004b; Rose, Reference Rose2016) to explore how young people responded to pervasive discourses about concussion and young people (Mah, Reference Mah2021). Arts-based research methods have the potential to generate abstract, tacit and emotional forms of knowledge that can be difficult to generate when words-based methods, such as qualitative interviews or focus groups, are used in isolation (Boylan et al., Reference Boylan, Linden and Alderdice2009; Hartman et al., Reference Hartman, Tibbles, Paniccia and Lindsay2015; Literat, Reference Literat2013; Mah et al., Reference Mah, Gladstone, King, Reed and Hartman2020; Tay-Lim & Lim, Reference Tay-Lim and Lim2013). When used in conjunction with words-based methods, past studies in health (see e.g., Eldén, Reference Eldén2013; Guillemin, Reference Guillemin2004a, Reference Guillemin2004b) have demonstrated the potential of drawing as an arts-based method to explore the multiplicity and complexity of the human experience of health and illness. It was for these reasons that an arts-based design, using participant-generated drawing and qualitative semi-structured interviewing methods, was deployed.
The findings reported in this paper are drawn from a larger study exploring how young people, with and without a history of concussion, experienced concussion as a social phenomenon (Mah, Reference Mah2021). In this paper, we focus specifically on findings generated with a selection of young people without a history of concussion to demonstrate how including this group in research ‘otherwise’ enabled a central finding of the study: an ‘at risk’ experience of concussion (elaborated below). Below, we introduce the setting, participants and consent procedures before elaborating on the methods of data generation and analysis. In reporting the number of participants and discussing how we generated data with them, we refer only to this group (i.e., young people without a history of concussion). Ethical approval for the study was obtained from the Research Ethics Board at the Bloorview Research Institute.
The setting for this study was a large interactive science museum in Ontario, Canada. Twenty-nine young people (6–18 years of age; 15 female) who self-reported a familiarity with the word ‘concussion’ participated in this study. A purposive sampling logic was used to select information-rich cases of importance to the study’s purpose (Patton, Reference Patton and Patton2002). Guided by this logic, we adopted a maximum variation sampling strategy to select a wide range of cases to account for heterogeneity in age and gender (Patton, Reference Patton and Patton2002; Sandelowski, Reference Sandelowski1995). Informed consent/assent was sought for study participation, as well as for the public display of data for knowledge dissemination purposes. Participants were informed that study participation was voluntary. Further, using an ethics-as-process approach, participants were informed prior to study participation, and reminded throughout study participation, that they could stop the interview or drawing process, refuse to answer a question, or withdraw from the study at any time (Ramcharan & Cutcliffe, Reference Ramcharan and Cutcliffe2001).
The data set for this study consisted of drawing data (with the option to write text), qualitative semi-structured interview data, researcher constructed data summaries, and researcher constructed reflexive memos (Birks et al., Reference Birks, Chapman and Francis2008; Guillemin, Reference Guillemin2004a, Reference Guillemin2004b; Kvale, Reference Kvale and Kvale1996; Rose, Reference Rose2016). Each participant was provided a large sheet (11″ high × 17″ wide ledger size cardstock paper) with the phrase ‘When I hear the word concussion, I…’ written at the top. Each participant was asked to create a visual response (a drawing with the option to write text) depicting how they thought or felt upon reading the phrase (or having the phrase read to them for those unable to read). No other direction was provided. For participants who chose to write their responses, thought bubbles with lines were provided for this purpose. Participants were provided a selection of drawing and writing utensils (e.g., pencils, pencil crayons, crayons and/or markers) and an unlimited amount of time to create their response. Each participant was told that we were not interested in how well they drew or wrote, but in what they had to share about their drawing or written response during the semi-structured interview that followed. Drawings and written responses generated during this phase served as elicitation devices for the interview that followed.
After generating their drawing or written response, each participant was invited to engage in a semi-structured interview that followed an interview guide specific to the visual data they chose to generate (i.e., drawing or written response data). All interviews were audio-recorded. Participants were asked to describe their drawing or written response, share how they learned about concussion and identify their intended audience. A series of questions and probes were used. For example, with regard to the intended audience, participants were asked ‘can you tell me who you drew your picture/have written your message for?’ If necessary, this initial question was followed by questions to probe further such as, ‘who do you think should see this picture/hear this message?’ and, ‘what would you tell that person about your drawing/message?’ This act of reflecting on their drawing or written response during the interview enabled a level of co-construction of knowledge of concussion that might not have been possible had either method been used in isolation (Einarsdottir et al., Reference Einarsdottir, Dockett and Perry2009; Guillemin, Reference Guillemin2004b; Mitchell et al., Reference Mitchell, Theron, Stuart, Smith, Campbell, Theron, Mitchell, Ann and Stuart2011).
To render the large amount of data generated for this study more manageable for analysis, a number of techniques were used: interview data was transcribed, drawing data was digitized and a data summary of each participant’s drawing or written response and interview data was created in an Excel spreadsheet. To gain a deep familiarity with the data, we engaged in multiple readings of the data (i.e., the drawing or written response data, interview data and data summaries), extensive reflexive memo writing and generative coding (Birks et al., Reference Birks, Chapman and Francis2008; Coffey & Atkinson, Reference Coffey, Atkinson, Coffey and Atkinson1996; Eakin & Gladstone, Reference Eakin and Gladstone2020; Kvale, Reference Kvale and Kvale1996; Miles & Huberman, Reference Miles, Huberman, Miles and Huberman1994). Analysis was guided by the study’s Foucauldian framework (Foucault, Reference Foucault1971, Reference Foucault1980, Reference Foucault1982a, Reference Foucault, Dreyfus and Rabinow1982b) and oriented by interrogative questioning with regard to the production, content and intended audience for the data (Eakin & Gladstone, Reference Eakin and Gladstone2020; Guillemin, Reference Guillemin2004a, Reference Guillemin2004b; Rose, Reference Rose2016). Questions asked of the data included: who produced this drawing/interview? what is represented in this drawing/interview? what discourses were in operation for this participant to experience and represent concussion in this way? who is the intended audience for this drawing/interview? Asking these theoretically driven questions of the data enabled us to account for the role of discourse in shaping how young people experienced concussion. Of note, we strove for what Eakin and Gladstone (Reference Eakin and Gladstone2020) term ‘value-adding’ analysis, or analysis that extended beyond the self-evident meanings of the data and common-sense conceptualizations of them. ‘Value-adding’ analysis maximizes the creative insight of the researchers, who re-conceptualize phenomena through theory to generate new knowledge, including ‘not just the ‘discovery’ of things heretofore unknown, but also the re-conceptualization of what is already known’ (Eakin, Reference Eakin2016; Eakin & Gladstone, Reference Eakin and Gladstone2020, p. 1). Using our Foucauldian framework (Foucault, Reference Foucault1971, Reference Foucault1980, Reference Foucault1982a, Reference Foucault, Dreyfus and Rabinow1982b), we re-conceptualized what is known about concussion, expanding the understanding of concussion only as a biomedical injury to consider it also as a social phenomenon that young people come to know and make sense of through discourse.
Including young people in research as ‘knowers’
We included young people in our study as ‘knowers’, as experts in their own lives, with the capacity for insight into their own experiences, and the competence to recount these experiences through research (Clark & Statham, Reference Clark and Statham2005; Grover, Reference Grover2004; Kortesluoma, Hentinen, & Nikkonen, Reference Kortesluoma, Hentinen and Nikkonen2003; Morrow, Reference Morrow2008). Notably, this inclusion of young people as ‘knowers’ did not result from the deployment of a specific research approach or method of data generation (e.g., ‘child-friendly’ drawing methods) but rather from the way we considered the role of young people in the production of knowledge. We regarded young people as co-producers of knowledge, taking seriously their experiences of concussion. For example, in asking young people to describe their drawing or written response, they contributed their expert knowledge to the first stage of analysis and interpretation, sharing with us what they considered meaningful about their experiences. It is worth noting that we were not interested in uncovering some supposed truth of young people’s experiences, in a positivist sense, but were keenly interested in how young people interpreted and responded to their experiences, and how these were shaped (or not) by discourse. Had we not adopted a critical social and post-structuralist approach, included young people in our research as ‘knowers’ and focused on the pervasive discourses circulating through their data, our finding of an ‘at risk’ experience of concussion would have remained obscured.
A central finding of the study: Young people ‘at risk’ of concussion in their everyday lives
In this section, we draw on an illustrative case example to demonstrate how we arrived at a central finding of our study – an ‘at risk’ experience of concussion (Mah, Reference Mah2021). Specifically, we draw on our analysis of data co-produced with Rose (12 years of age), Vincy (11 years of age) and Ava (11 years of age) which, when theorized, provides novel insight into how young people experienced concussion as a social phenomenon. All terms or phrases that appear in double quotation are taken directly from drawing or interview data produced with participants. Italicized text indicates emphasis placed on a word by the participant.
Concussion was perceived by young people to have an undiscerning nature, with the potential to effect ‘anyone’ and ‘everyone’. This notion of an indiscriminate adversary was summed up succinctly and with humor by Rose in response to the question, ‘who do you think can get a concussion?’:
Rose: Anybody…anything, anybody [pause]. Except for chairs or inanimate objects.
KM: So, any living thing? [confirming]
Rose: Yah. Any living thing! [laughing]
Originally, we assumed that Rose misspoke when she explained that ‘anything’ can sustain a concussion. However, after a brief pause, she clarified her response, saying, ‘except for chairs or inanimate objects’. We initially understood this clarification through her tone, as an attempt to poke fun at herself, for a ‘slip of the tongue’. And, as a single instance, these words could be interpreted as such, however, in the context of other data produced by participants in response to our questions, we have come to view Rose’s statement differently, as a warning of sorts. Rose stressed not once but twice that ‘anybody’ can get a concussion, before using humor and hyperbole to underscore the pervasiveness of concussion and the ‘at risk’ position of all living things in relation to it.
Like Rose, Vincy shared the sense that concussion was undiscerning with regard to who was ‘at risk’. When asked who she believed could get a concussion, Vincy shared:
Anybody can get a concussion because, it’s not something that you, like, you make happen. It’s something that just comes, because you’ve like, either you did an accident, or you’re fooling around…so it can happen to anybody, anywhere.
To Vincy, concussion is something that can happen to ‘anybody, anywhere’, a belief which served to reinforce the notion that concussion is undiscerning. To this Vincy added that concussion, ‘just comes’, wording which implied to us an injury that occurs as pure happenstance, and with the potential to affect, ‘anybody’. Within this same exchange however, Vincy also described concussion as the result of specific actions. While this might be considered as ambivalence with regard to who is at risk of concussion (i.e., anybody versus only those who fool around), this might also be interpreted as ambivalence regarding whether the risk of concussion can be avoided. To illustrate, in explaining that concussion is ‘not something that you, like, you make happen’, the idea of avoiding that which ‘just comes’ seems near impossible, futile even. However, when Vincy added that concussion ‘just comes, because you’ve like, either you did an accident or you’re fooling around’, concussion is constructed as a consequence of specific actions and thus as avoidable, for example, by not ‘fooling around’.
This same ambivalence with regard to who is at risk of concussion and whether concussion can be avoided was also evident when Ava shared the following in response to the question, ‘who can get a concussion?’:
Anybody who doesn’t be super careful, they don’t have to necessarily have to be super careful, but they can still get one even if they’re just being careful because it just, it can happen to anyone who plays sports or just turns around while running or something like that…
In this exchange, concussion is again constructed as an injury to which ‘anybody’ is at risk and which results from specific actions and thus should be avoidable. However, like Vincy, Ava appears to waver in just how avoidable she believes concussion to be. While she floats the notion of a protective ‘super caution’, she almost immediately replaces the notion with ‘caution’ before explaining that a person ‘can still get one’ even if they’re being careful. Later, Ava returned to the notion of a protective caution when asked who she would share her drawing with and why:
Um…people who don’t think they need to be careful… because it’s very easy to get a concussion is you’re not being careful and just being careless.
The above does suggest that Ava believes caution to be somewhat protective against the risk of injury. While the ‘careful’ person may still be injured, Ava’s phrasing – ‘it’s very easy to get a concussion if you’re not being careful and just being careless’ – suggests that the ‘careless’ are much more likely to be injured. That is, even for the young person who is ‘careful’, concussion is difficult to avoid because of the ordinariness with which it occurs. Whether ‘fooling around’, ‘play[ing] sports’ or ‘just turn[ing] around while running’, activities which are arguably very common in young people’s everyday lives, young people are ‘at risk’ of concussion.
From our analysis of this case, we gain a sense of how young people conceptualize concussion, and how they think about themselves in relation to it. First, concussion is constructed as an injury that is so indiscriminate that all young people are constituted ‘at risk’ in relation to it. Second, if ‘at risk’ young people are to minimize their risk, they must choose being ‘careful’ rather than ‘careless’, each and every time. Yet, despite these measures, young people continue to be ‘at risk’ because of the everydayness with which concussion occurs. The effect is to demand a constant state of vigilance to avoid slipping into carelessness, thereby putting oneself at increased risk of injury.
Accounting for an ‘at risk’ experience of concussion: Engaging discourse
Our finding of an ‘at risk’ experience of pediatric concussion was made possible by making a commitment to questioning assumptions and deconstructing discourses that are so ingrained in the health and rehabilitation sciences as to be mostly unquestioned and unchallenged. Had we not questioned the limitations of biomedicine and positivism to fully account for the complexity of health phenomena, we would not have sought a different way of knowing – or paradigm – through which to conduct research about pediatric concussion. Without challenging notions of young people as incomplete beings, we would not have included them in research as ‘knowers’, whose knowledge about the experience of concussion is to be taken seriously.
Beyond how we approached our study and included young people in ways that acknowledged their expertise, the central finding of an ‘at risk’ experience required that we analyze and interpret our data differently. In keeping with our conceptual interest in discourse, we regarded all data as a manifestation of dominant social discourses (Allen & Cloyes, Reference Allen and Cloyes2005; Funk & Stajduhar, Reference Funk and Stajduhar2009). That is, we understood discourse to be articulated through all data generated with participants and, accordingly, approached our analysis with an aim to reveal the taken-for-granted discourses imbued within (Funk & Stajduhar, Reference Funk and Stajduhar2009; Rose, Reference Rose2016). Engaging with discourse enabled us to understand that the meaning of concussion that young people shared with us in research was not reflective of a so-called truth of concussion but rather of patterned ways of thinking, knowing and acting.
Discussion
Bringing young people into pediatric concussion practice
In approaching the theme of this special issue, we were struck by the difficulty of bringing people together in pediatric concussion practice, without first changing those practices. We challenged ourselves to consider the following: how can we bring people together, without first regarding young people ‘otherwise’? That is, as social beings in their own right, rather than as incomplete ‘human becomings’ (James et al., Reference James, Jenks and Prout1998; James & Prout, Reference James and Prout1997; Qvortrup, Reference Qvortrup, Close and Collins1985). We have drawn on a central finding from our research to illustrate how we have gone about doing things ‘otherwise’.
Our novel finding of an ‘at risk’ experience of concussion would have remained obscured had we not engaged the concept of discourse. Risk, as a concept is so central to the lives of young people, that it has become a central aspect of their subjectivity (Lupton, Reference Lupton2013). From a very young age, young people’s lives are influenced by an awareness of risk, and by an expectation that they avoid risk (Lupton, Reference Lupton2013). From a social science perspective, risks are the product of historical and social ways of seeing (Lupton, Reference Lupton2013). In Foucauldian terms, our finding of an ‘at risk’ experience of concussion is constituted as such by risk discourse (Packer, Reference Packer2010; Yates & Hiles, Reference Yates and Hiles2010).
Notably, this is not how risk has been conceptualized in the field of pediatric concussion, where biomedically-oriented ways of thinking, practicing and researching construct particular groups as innately ‘at risk’ (e.g., those with a history of depression), and certain activities as innately ‘risky’ (e.g., contact sports) (Brett, Kuhn, Yengo-Kahn, Solomon, & Zuckerman, Reference Brett, Kuhn, Yengo-Kahn, Solomon and Zuckerman2018; Iverson et al., Reference Iverson, Gardner, Terry, Ponsford, Sills, Broshek and Solomon2017, p. 201; Lupton, Reference Lupton2013). Thus, our finding of an ‘at risk’ experience of concussion is significant in that it represents pediatric concussion not only as a biomedical injury, but also a social phenomenon, that young people come to know through how they encounter and experience concussion in the social world, which will always and inevitably be shaped by the assumptions and discourses that pervade that world (Mah, Reference Mah2021).
In what follows, we invite readers to ask themselves what might be gained by re/imagining concussion not only as a biomedical injury but also as a social phenomenon and experience, and young people as actively making sense of concussion through their experiences with it in the social world. For as previous work has taught us, in the absence of young people’s knowledge pertaining to issues of concern to them, it becomes difficult to know how best to meet their needs, including those related to clinical care (Mah et al., Reference Mah, Gladstone, King, Reed and Hartman2020). Bringing young people into research as ‘knowers’ has provided a number of key learnings, which suggest a different approach to pediatric concussion practice. We share these below in the form of implications for research and clinic.
Challenging ourselves to think ‘otherwise’
To come to think of young people and concussion in the above terms required a self-critique of assumptions that are deeply held in the field of pediatric concussion. Engaging in this self-critique does not imply that current practices are necessarily bad or wrong, but rather that they are not the only way (Gibson et al., Reference Gibson, Nixon and Nicholls2010; Nixon et al., Reference Nixon, Yeung, Shaw, Kuper and Gibson2017). We invite health and rehabilitation practitioners and researchers, within the field of pediatric concussion and beyond, to take a reflexive stance toward their current practices and the assumptions ingrained within and to question how they might also think ‘otherwise’. One exercise that has enabled our team to identify our assumptions and develop the capacity to inquire ‘against the grain’ is to ask ourselves the following reflexive questions: ‘how do I know what I know?’ what assumptions must I hold to think this way? and, what can be gained by thinking ‘otherwise’?’. Those new to this practice of questioning how we know what we know might benefit from a framework for thinking differently, such as Nixon and colleagues’ (Reference Nixon, Yeung, Shaw, Kuper and Gibson2017) Seven-Step Framework for Critical Analysis and its Application in Physiotherapy.
Re/framing concussion as a social phenomenon
Our focus on ‘the social’ is not practice-as-usual in the biomedical and rehabilitation sciences; however, it has been invaluable to our analysis, enabling us to understand that what young people think and understand about concussion is an effect of pervasive ways of thinking about concussion and young people. This conceptualization of concussion as a social phenomenon has the potential to provoke new lines of injury, or to re/frame existing ones in other terms. For example, while concussive history has been studied as a risk factor for subsequent concussion, depression and suicide (Covassin, Elbin, Beidler, LaFevor, & Kontos, Reference Covassin, Elbin, Beidler, LaFevor and Kontos2017; Mantey, Omega-Njemnobi, Barroso, & Kelder, Reference Mantey, Omega-Njemnobi, Barroso and Kelder2020; Schmidt et al., Reference Schmidt, Rizzone, Hoffman, Weber, Jones, Bazarian and Svoboda2018), it has yet, to our knowledge, to be framed as an asset, an experience from which young people acquire a social competence specific to concussion that might be drawn upon in the event of re-injury (Mah, Reference Mah2021). By re/framing familiar concepts through different lens, researchers may discover facets of the problem that were previously unexplored or questions that have yet to be asked.
Re/imagining young people as ‘knowers’
By including young people as ‘knowers’, we have yielded new insights with the potential to change clinical practice, including how practitioners interact with young people who may feel ‘at risk’ of concussion. Our research suggests that young people, even those who have never been injured, view concussion as a threat in the everyday activities of life, while understanding themselves to be perpetually ‘at risk’ of concussion (Mah, Reference Mah2021). In light of these findings, we invite practitioners to consider that their young clients may feel threatened upon sustaining injury. Gaining a sense of if, and why, the client feels threatened may enable the practitioner to better direct the reassurance that is recommended with regard to the acute effects of injury, expected course of recovery and factors that may influence recovery and outcome (Lumba-Brown et al., Reference Lumba-Brown, Yeates, Sarmiento, Breiding, Haegerich, Gioia and Timmons2018a; McCrea & Manley, Reference McCrea and Manley2018; Reed et al., Reference Reed, Zemek, Dawson, Ledoux, Provvidenza, Paniccia and Yeates2019). This might involve acknowledging and normalizing that concussion can be a source of fear, worry and anxiety for young people and their parents (Clair, Levin Allen, Goodman, & McCloskey, Reference Clair, Levin Allen, Goodman and McCloskey2020; Gillie et al., Reference Gillie, Fazio-Sumrok, Eagle, Kegel, Trbovich, Collins and Kontos2020; Kroshus et al., Reference Kroshus, Qu, Chrisman, Schwien, Herring and Rivara2019; Minney, Roberts, Mathias, Raftos, & Kochar, Reference Minney, Roberts, Mathias, Raftos and Kochar2019; Zemek, Farion, Sampson, & McGahern, Reference Zemek, Clarkin, Farion, Vassilyadi, Anderson, Irish and Osmond2013) before asking the client and family if they have any specific fears or anxieties related to concussion and recovery. This dialogue might serve as a starting point from which to individualize care and reassurance to the specific concerns of the client and family.
Future Directions
In a field dominated by adult-centric research, which necessarily translates to clinical practices informed by adult-centric evidence, we argue that the move to include young people in research as knowers is necessary if we are to reshape the field in ways that best meet the needs of those it purports to serve (Mah et al., Reference Mah, Gladstone, King, Reed and Hartman2020). The study described here signals advancement in the field in that it is one of only a few studies to account for the knowledge of young people and to regard this knowledge as legitimate. However, much work is to be done if we are to align ourselves with fields that have long included young people as knowers (e.g., children’s participation in social life) and have progressed to research that considers the perspectives of young people and adults in the same study (see e.g., Gladstone, Reference Gladstone, Reupert, Maybery, Nicholson, Gopfert and Seeman2015; Ulvik, Reference Ulvik2015; Wyness, Reference Wyness2013).
Childhood scholars have acknowledged that, while the move to foreground young people in research was once necessary, making room for young people’s perspectives in research dominated by adult voices, this political and conceptual move has had unintended consequences (Gladstone, Reference Gladstone, Reupert, Maybery, Nicholson, Gopfert and Seeman2015; Punch, Reference Punch2020; Wyness, Reference Wyness2013). By considering young people the sole interpreters of their life experiences, adults have inevitably been pushed to the background, and the interdependent nature of relations between young people and adults have been neglected (Gladstone, Reference Gladstone, Reupert, Maybery, Nicholson, Gopfert and Seeman2015; Wyness, Reference Wyness2013). This approach to research is no longer sufficient to gain insight into the complexity of young people’s lives (Punch, Reference Punch2020; Spyrou, Reference Spyrou2017). In research with young people about their lives, including in relation to health, wider generational relations should be considered (Rosen & Faircloth, Reference Rosen and Faircloth2020; Vanderbeck & Worth, Reference Vanderbeck and Worth2015). Moving forward, much can be gained by considering children as social actors, who exist always in relation with others, and whose lives are shaped by intergenerational relations, including those between young participant and adult researcher, and young patient and adult practitioner (Mah, Reference Mah2021). However, we caution that as a field, we are not yet at a position in which this ideal can be realised. First, we must commit to valuing the perspectives of young people in research and expand our base of knowledge generated with them. Only then we can endeavour to move forward in a way that values the perspectives of young people and adults and thus accounts for the complexity of pediatric concussion.
Conclusion
We have diverged from the research conventions in the field in important ways, engaging a critical social perspective and the concept of discourse to enable us to examine pediatric concussion as constructed in a specific time and place by prevailing biomedical ways of knowing, thinking and practicing. We have challenged ourselves to think beyond the limits of biomedicine and positivism and to explore the complexity of concussion from the perspective of those most affected by it. It is our hope that the ideas presented here will serve as a stimulus for thinking differently in pediatric concussion practice. For only once we begin to acknowledge, challenge and shift conventional ways of thinking – to think ‘otherwise’ – can we hope to advance our practices to best meet the needs of young people ‘at risk’ of and living with concussion.
Acknowledgements
The authors would like to thank the participants without whom the research, and ideas put forth in this paper, would not have been possible.
Financial Support
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
Conflicts of Interest
None.
Ethical Standards
The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.
