“We are all just humans participating”: the role of an embodied approach, virtual space and artistic media in shaping participants’ experience in a co–design process

ABSTRACT

Integrating multiple perspectives is key to successful co-design, yet often hampered by communication gaps arising from different epistemological backgrounds and lived experiences. This challenge is amplified when the design problem centres around experiences that are difficult articulate in words, such as those in Parkinson’s disease (PD). To explore alternative strategies for communication between diverse PD stakeholders, Piece of Mind brought together neuroscientists, performing artists and individuals with lived experience to co-create an interdisciplinary performance grounded in scientific and experiential knowledge. Participants met on Zoom over nine months, in which creative, embodied approaches were used to share scientific concepts, facilitate discussion, and identify key issues for the performance. We built on emergent themes through virtual and in-studio collaborations, culminating in a 45-min filmed and live performance. We conducted semi-structured interviews with a subset of participants regarding their co-design experience and take-aways, to identify elements of process, space and materials contributing to its success. We found that an embodied approach, in virtual space and incorporating multiple artistic media, enabled participants to leave their comfort zones and disciplinary boundaries to engage with one another through curiosity and generosity – and consider how these conditions facilitated disparate starting points to converge towards a common goal.

KEYWORDS:

• Parkinson’s disease
• intersectoral collaboration
• embodiment
• performing arts
• circus
• participatory sensemaking

1. Introduction

Facilitating active participation from people with a broad range of abilities and experiences is a cornerstone of successful co-creation and co-production (Voorberg, Bekkers, and Tummers 2015). This is particularly true in co-design, a specific instance of co-creation that brings individuals with lived experience into the design team as ‘experts of their experience’ (Sanders and Stappers 2008). At its best, the co-design process successfully harnesses the collective creativity of a design team with members from different backgrounds and interests in a focused exercise of joint inquiry and imagination (Steen 2013). Currently, the field of co-design broadly acknowledges the importance of creating spaces for mutual learning amongst researchers, designers and end-users throughout the design process (Slegers, Duysburgh, and Hendriks 2015), which leads to more appropriate designs and end products that are more likely to be appropriated (Pullin 2016). However, the methods and processes of creating these spaces are traditionally predicated on fluent verbal and affective communication between team members. Despite recent efforts to adapt co-design processes to different sensory and cognitive abilities and neurodiverse populations (Cascio et al. 2020; Raman and French 2022; Smeenk, Sturm, and Eggen 2018), these are continuously faced with the challenge of harnessing tacit knowledge accrued through ‘being-in-the-world’ (Merleau-Ponty 1962) – that is, one’s lived and embodied experience that eludes words and is more often ‘carried and transmitted through action’ (Nimkulrat et al. 2020, 269). This communication gap becomes particularly problematic when these experiences differ amongst design participants, and yet are central to the design problem.

Such was the case in Piece of Mind, a participatory, arts-based knowledge translation project in which researchers, artists and individuals affected by PD were brought together to co-design a performance based on neuroscientific knowledge and lived experiences. Parkinson’s disease is a neurodegenerative disorder primarily characterised motor impairments, but in which the whole body is impacted in complex and heterogeneous ways (Volpicelli-Daley 2017). Both its visible manifestation (e.g. tremor; slowed movement) and its invisible features (e.g. cognitive and psychiatric symptoms) impact not only the quality of life of persons with PD (PwPs), but also contribute to social stigma and misperceptions (Tsiang and Woo 2020). In Piece of Mind, we sought to 1) investigate whether creative collaboration could facilitate knowledge exchange and empathy between participants with diverse associations to PD; and 2) produce a multi-disciplinary (dance, circus and theatre) performance that could communicate both scientific research and lived experience of Parkinson’s disease to a general public.

At the heart of our query is the role of the body in design thinking, doing, and sense-making. A rich literature considers embodied and tacit knowledge in co-design, with previous reports focusing largely on their manifestations in a shared physical space, including through gesture, stance and perspective-taking (Bilda, Candy, and Edmonds 2007; Poulsen and Thøgersen 2011; Tenenberg, Socha, and Roth 2016). Moreover, analogue and digital tools have been described for their potential as boundary objects (Hummels and Van Dijk 2015; Peters, Loke, and Ahmadpour 2021; Smit et al. 2022); that is, ‘things to think with’ through which multiple perspectives and knowledge domains can coalesce (Star 1989). This is key for participatory sense-making – the intersubjective process by which a group of individuals reaches a joint understanding (De Jaegher and Di Paolo 2007). This form of social cognition is embodied and enactive, requiring the ‘coordination of intentional activity in interaction’ (497, De Jaegher and Di Paolo 2007) in a shared action space to generate new domains of sense-making that supersede those available to any one individual. The role of participatory sense-making in co-design has been expanded on by Hummels and van Dijk (2015), who propose seven design principles for face-to-face embodied sensemaking technology. These were applied in the participatory design of technologies to support the sensory, habitual, affective and social dimensions of the autistic lifeworld (van Huizen et al. 2023).

Piece of Mind aligns with the theoretical framework of participatory and embodied sense-making and the resulting methodologies for co-design, particularly by using non-verbal, creative group activities as an entry point into sharing embodied and tacit experiences. Nonetheless, our project differs in several important regards. First, it took place in the height of the COVID-19 pandemic, and thus largely unfolded in a virtual space. Second, our approach was grounded in creative movement to deliberately bring tacit and experiential knowledge to the forefront. Lastly, the materials employed in the co-design process were artistic media rather than tangible objects per se, and the product was an artistic performance as opposed to a material artefact or technology. Given these unique characteristics, the objective of this qualitative study is to describe how components of space, process and media shaped participants’ self-reported experience in the co-design process, and contributed to the successful delivery of a final product.

2. Methods

In this qualitative, retrospective analysis of a participatory, arts-based knowledge translation project, we used data collected via semi-structured interviews to consider how process, space and media influenced the participants’ experience within the co-design process. The project was designed and carried out first author NK, with facilitation from RB and guidance from authors AT and SBM. Ethics was obtained from the Institutional Review Board of McGill University (A12-B74-20B).

2.1. Participants

At its core, Piece of Mind was comprised of approximately 24 individuals who met over a 9-month period. Purposive sampling was used to recruit graduate students researching PD (n = 5), a professor researching PD (n = 1), circus performers (n = 4), dancers (n = 4), musicians (n = 3), persons with PD (PwPs; n = 5), a caregiver (n = 1) and a dance/movement facilitator (n = 1). While individuals were recruited based on these primary roles, several participated in multiple capacities throughout the project; for example, a neuroscientific researcher also composed music for the final performance, and the dance facilitator was also a PD researcher.

2.2. Co-creative process: Zoom sessions

The first phase of the project took place over Zoom between October 2020 – April 2021. At the onset, researchers and artists participated in an art-science workshop, hosted by Cristian Zaelzer (Convergence Initiative; https://www.convergenceinitiative.org/), and were paired to explore how they might illustrate PD research findings through artistic media. The aim was to enable participants to gain first-hand experience with art-science collaboration, and to create short (2–5 min) videos to communicate scientific topics to other project participants.

Approximately 10 Zoom sessions (~2 bimonthly, 1.5 h each) followed, in which creativity and embodiment helped facilitate relationship-building, create common ground between participants, and explore concepts from the art-science videos. These sessions began with 30 to 45 minutes of group dance and movement exercises (e.g. gestural telephone game), with a focus on using play and improvisation to engage with specific topics from scientific research (e.g. the role of diverse neurotransmitters in PD) or from lived experience (e.g. the feeling of chaos). This was followed by a discussion regarding the lived experience of PD, drawing connections with scientific research and identifying key issues to highlight in the performance. These included invisible aspects and misperceptions of PD, how to move past motor limitations, PD’s effects on the rhythm of life, and communication barriers in healthcare.

Approximately five sessions into the process, NK reviewed the discussions and identified key metaphors and themes that had emerged to date. These were presented to participants, and developed through improvisation, focused discussions, and smaller break-out collaborations to create music, choreography, poetry, and theatrical scenarios for the performance. The content of the Zoom sessions diversified as participants brought new propositions to the group, including participatory sound- and music-making (e.g. ‘Give us a hand’ video), poetry (e.g. ‘Sur le fil’ group recording, poetry workshop on time perception), a round-robin activity in which relevant issues were explored from the perspectives of lived experience, scientific research and artistic representation, and a series of weekly ‘musical diaries’ in which a PwP conducted musicians via Zoom to convey aspects of her PD experience.

2.3. Artistic residencies

Two in-studio artistic residencies served to build on and transform the content from our virtual collaboration into a full-length performance piece. A three-day residency (April 2021) allowed for an initial exploration of how we could represent the key themes, aspects of lived experience, and scientific content on stage. We refined material from the art-sci videos, considered how the poem ‘Sur le fil’ could be represented in a slackline act, and explored new ideas using props available to us in the studio space. Participants who could not join in person were invited to watch and provide feedback over Zoom. The explorations were video-recorded, and all content was documented to create a collaborative mind-map for the performance.

In June 2021, the performance and production team (n = 13) came together to create, rehearse, and film the final performance over one month in studio. The performers included five professional and semi-professional circus artists and dancers, two neuroscience graduate students, and a woman living with Parkinson’s disease. Other participants were kept informed by weekly email progress updates and rehearsal videos. Occasional one-on-one or group Zoom meetings were organised for direct consultation, to ensure that the performance material remained true to the lived experiences on which it was based, and accurately reflected scientific knowledge.

2.4. Piece of Mind: Parkinson’s performance

The filmed, 45-min performance was edited and released on YouTube in July 2021, accompanied by an official launch and audience discussion over Zoom. A live performance also took place in Montreal in April 2022 (Coeur des sciences, UQAM; approximately 350 attendees), followed by an audience discussion with the Piece of Mind team and a local PD researcher. The performance integrates multiple perspectives and expertise conveyed through theatre, dance, circus, music, sound design, spoken word and cinematography. French and English audio clips from the Zoom sessions were incorporated throughout to share participants’ experiences in their own words, with subtitles available in both languages. Supplementary materials were produced to accompany the film, including scene descriptions, participant testimonials, and making-of footage. All videos, including the performance, supplementary materials and original art-sci videos, are available for free on YouTube (https://youtu.be/-PiWs_LDOqk). We have additionally published a detailed written description of the performance (Kuhlmann et al. 2023) and have reported on its impact on audiences (Kuhlmann et al. in preparation).

2.5. Data collection and analysis

Drawing on her experience as project lead, NK devised and conducted 30-minute semi-structured interviews with a subset of the participants (n = 15). Interviews were conducted over Zoom in English or French and video-recorded for analysis. Questions focused on how an arts-based approach shaped the process, the participants’ self-reported role in the project, expectations at its onset, reflections on performing in or watching the final piece, and their main take-aways (see Appendix A).

Video recordings were transcribed, and the resulting documents were managed in NVivo (version 12). NK conducted a thematic analysis, using an inductive approach to assign descriptive codes to text segments (Braun and Clarke 2006; Saldana 2015). Through an inductive and iterative process, each code was further reviewed for internal homogeneity (e.g. consistency) and external heterogeneity (ex. discrete codes) (Braun and Clarke 2006). The resulting codes were then sorted into one or more broader themes; this non-exclusive sorting permitted us to consider the overlap and relationship between different themes. Twenty percent of the references within each code identified by NK were independently coded by another author RB to verify the consistency of interpretation of the data. All resulting codes and themes were discussed and revised with all authors at various stages of the analysis process.

Each code is referred to below as C-# throughout the article, and a summary is provided in Table 1. A pseudonym has been assigned to each interviewee to de-identify them in direct quotations. French-language quotations (noted throughout) have been translated to English by NK and verified by a native French speaker.

Table 1. Description of themes and codes.

Label	Description
Theme 1. Participant’s Experience Trajectory	Participants’ reflections of their own experience, and how it changed throughout the co-design process.
1.1. Comfort Zone	References to feeling outside one’s comfort zone; being uneasy, uncertain, challenged or confronted.
1.2. Contribution	Comments regarding a participant’s perceived contribution or lack thereof (e.g. what they brought to the project). Includes questioning their role (e.g. ‘what am I doing here?’) or reflecting on how it changed throughout.
1.3. Sense of Belonging	References to feeling a sense of belonging, togetherness and/or community; feeling part of a whole.
1.4. Listening and Openness	Comments regarding the participants’ openness to sharing their experiences and listening to those of others. Includes mentions of curiosity, generosity and trust.
1.5. Key Take-Aways	Participants’ comments on what they will carry forward from their experience; new insights and knowledge.
Theme 2. Process	Participant’s reflections on the ‘ingredients’ of the project, whether a specific strategy or characteristic, as being a facilitator or barrier to the co-design process.
2.1. Embodied Approach	References to the use of an embodied approach (e.g. one grounded in movement and/or the senses).
2.2. Participant Dynamics	References to the interaction between participants or the group dynamics throughout the process.
2.3. Joint Vision	References to having, being committed to or united around a shared goal and/or joint vision.
2.4. Flexibility	References to flexibility of the approach; not having a pre-determined goal; the process being emergent.
2.5. Novelty of Approach	References to the novelty or uniqueness of the project, whether in the mix of participants, methodologies, disciplines, etc.
Theme 3. Space	Participant’s reflections on the space (e.g. physical or virtual) in which we collaborated, and how working over Zoom or in person shaped interactions and the co-design process.
3.1. Affordances	References to the positive attributes of, and unique opportunities provided by, a virtual or physical setting.
3.2. Frustrations	References to the negative attributes of, and frustrations from, a virtual or physical setting.
Theme 4. Media	Participants’ reflections on the artistic media that were used to explore and communicate the topics at hand, both during the co-design process and in the final product (i.e. the performance).
4.1. Engagement Catalysts and Boundary Objects	References to how the media worked to engage participants, and how specific elements (e.g. poem, art-sci video, circus number) acted as a scaffold for co-design.
4.2. Translation Between Artistic Media	Comments on the specific advantages and disadvantages of specific media (e.g. music, spoken word, acrobatics, video) and how they shape the message, and the trade-offs when translating between media.

3. Results

A total of 14 Piece of Mind: Parkinson’s participants agreed to a 30- to 60-minute interview, including four neuroscientific researchers, one musician, four performing artists, three PwPs, one family member and an artistic director; many had overlapping roles. We defined four major themes:

1. Participant’s Experience Trajectory: Throughout the process, participants’ experience progressed from uncertainty regarding the project and their role within it to the co-construction of meaning through shared experiences.

2. Process: An embodied, participatory approach pushed participants outside of their comfort zone to open new avenues for communication.

3. Space: Using a virtual platform was an unexpected facilitator for blurring traditional roles and creating a sense of togetherness.

4. Materials: A diversity of artistic media acted as scaffolds to integrate multiple perspectives towards a joint vision.

3.1. Participants’ experience trajectory

A common experience trajectory emerged in which participants reported moving from discomfort and uncertainty of their potential contribution to a having sense of belonging and experiencing a blurring of roles.

Many participants expressed feeling outside of their comfort zone (C1.1) at the onset of the project; they felt uneasy, vulnerable and challenged, particularly with regards to the exploratory nature of the project, the novelty of engaging in improvisation and creative movement, and their position in relation to other participants. Several questioned their role and contribution to the project (C1.2). The first meetings were marked by a heightened awareness of participants’ pre-assigned ‘labels’ within the group, reflected in one circus artist’s comment:

I was feeling a little bit uncomfortable because I felt like there were a lot artistic performers and not so many people with the illness. So, then I was kind of feeling like “ahh, are they feeling uncomfortable because we are outnumbering them?” – Audrey

Participants noted that the discomfort faded as the project continued – the self-consciousness gave way to a focus on the group and a sense of belonging within it (C1.3). Indeed, many emphasised the strong feeling of community and togetherness as a highlight of Piece of Mind. One participant with Parkinson’s, who had initially struggled to find his place, remarked on the dissolution of specific roles and the group dynamic that emerged:

[…] But the further along we got, Naila, I think the more I felt at ease. And then I also think that you, and the others too, perhaps felt more at ease with me. […] And we didn’t split hairs in the sense that ‘ah you, you’re a dancer or you’re a juggler or you’re a tightrope walker’. You know, I don’t think we judged each other by the title we each had. You managed to, like, make a unified group out of what couldn’t be at first. – Stéphan (translated from French)

Nevertheless, positionality remained an important element throughout, as it determined what knowledge and experience participants contributed. One musician emphasised how listening and openness (C1.4) became a crucial part of the group dynamic:

I think everybody, regardless the role they were holding in the group, there was something that they didn’t know. Which meant that they needed to sit back and listen as much as there was a point for them to come forward and say something. […] So I think that there was a sense of listening that I think it was very special about this group. That allowed that it was really OK for people to express what they wanted to express. – Leanne

The welcomed curiosity freed participants to ask questions they would not otherwise. Several participants with Parkinson’s remarked that the artists and researchers posed questions they had never been asked within a clinical setting – despite the information being relevant. Participants’ genuine desire to learn was met with an equal commitment to sharing honestly. One participant with Parkinson’s, who agreed to perform in the final piece, describes:

Then, you [giving] me the honor of asking me to be there with you all the time was like ‘oh my gosh I owe them ten thousand times all of the truthfulness that there is, the last bit and part and scrape and grain and speck of truthfulness that I deserve to you and to also the people with Parkinson’s that are in the team’. And also like all of the artists who were, who felt so genuinely engaged and their feelings seem to be not just ‘OK I’m paid to do some somersaults, you want me to do a somersault OK here I go’. […] If they were to be genuinely engaged I had to be at least as engaged. So that’s where I shed all of my filters and all of my barriers, and that was it. – Amélie

When asked about key take-aways (C1.5), all participants remarked having gained a lot from the process, including new insights for their artistic practice, appreciation of the breadth of PD research, a human perspective to complement their scientific pursuits, a recognition of the value of asking and listening, and practical knowledge of how to organise an interdisciplinary research-creation project.

Having described the participants’ experience trajectory, we next examined participant-reported factors that contributed to the project’s success, with a focus on how process, space and materials shaped the outcomes.

3.2. Process

A key element of Piece of Mind: Parkinson’s was its use of an embodied approach (C2.1) that: 1) facilitated relationship-building between participants; and 2) bolstered an explorative attitude towards the exchange of experiences, knowledge and ideas.

Starting each session in movement established an implicit rapport between participants that may not have emerged in conversation. Beyond breaking the ice, the playful dance activities allowed participants to express themselves outside of words. Several noted that this enabled them to build common ground through shared experiences, and triggered emotions or qualities that may not have come up otherwise – but could be deepened via discussion thereafter. One researcher observed:

[…] you are able to see other people in their movement without them having to tell you, you know, exactly what they’re doing, what they are feeling, whatever. You could sort of just see it and I think […] in the beginning it really just facilitates on one hand, like, communicating with each other. But I think also maybe for the other participants not having to put a word on everything they were feeling because they could just sort of like, the movement was enough in a sense. – Sasha

The focus on creative and improvised movement also contributed to the sense of community and dissolution of roles (see Results − 1). The artistic director noted:

Some moments I really remember watching the screen and like “I don’t know who has Parkinson’s now”, you know? Because everybody moves in their own way and it’s interesting, everybody is interesting in his own way. […] We just all love to dance. – Jimmy

This sentiment was echoed by multiple participants, who highlighted the participant dynamics (C2.2) as a major strength. Remarking on the variety of open and creative individuals in the project, a neuroscientist/dancer stated:

[…] it made it feel kind of like a playground. Everybody was just happy to throw out different ideas, try them out and bring their own strengths to work towards a shared goal. – Cassie

Another notable contributor to the project’s success was the joint vision (C2.3) that was established despite individual differences, as articulated by the spouse of a woman with PD:

[…] that people can see—coming from different backgrounds—can talk about the same thing, be engaged by the subject, for me, that was super important because it’s true […] that you feel a bit alone even if you talk to friends, etc. But it’s not the same as having people outside who say ‘actually, this subject interests me. – Antoine (translated from French)

Nevertheless, participants also appreciated the flexibility (C2.4) within the co-design objectives and process. Several noted that the freedom to explore – causing uncertainty at times – ultimately enabled us to integrate multiple perspectives into the final product.

Overall, the variety of participants, the embodied approach, and the balance between a joint vision and flexibility made for a process that participants appreciated for its novelty (C2.5), with the ability to push disciplinary boundaries being a major take-away. An unanticipated contributor to Piece of Mind’s originality was our use of virtual space.

3.3. Space

The need to conduct a large part of the project over a virtual platform came with unexpected advantages, particularly in facilitating the dissolution of roles and a sense of togetherness. Despite initial concerns regarding the constraints of Zoom on an embodied approach, many participants reflected on its unique affordances (C3.1). One PwP was shocked at how quickly the group connected over Zoom, noting that ‘we’re caring for souls in a 2D picture’ (Amélie). One dancer hypothesised that a virtual space provided common ground in a way that a physical space would not:

[It] kind of equalized us, you know? We couldn’t be like ‘oh my god, this person is so much better than everyone else, and me, I can’t dance’. It wasn’t like that. It was like everyone’s dancing and it looks cool on screen. What it looks like collectively on small screens, it’s beautiful. So everyone felt that they were participating, I guess, in this visual effect that everyone was seeing on their screen. – Leia (translated from French)

Indeed, this contributed to a sense of togetherness and belonging (C3.1), with several participants noting they couldn’t tell ‘who was who’ on the screen – in other words, ‘everybody was just a human participating’ (Cassie).

However, participants also expressed frustrations (C3.2) with the virtual platform. Beyond the usual technical difficulties, one PwP shared how jarring it felt when she first signed off a call and found herself completely alone. A performer highlighted the difficulties of a hybrid format when part of the team moved into a physical space (residency studio): while she appreciated the new types of interactions and heightened group feeling within the room, she felt torn regarding the participants who were still on screens.

While a physical space was necessary for bringing our co-constructed ideas to life, the use of multiple artistic media allowed those participating virtually to continue contributing to the co-design process.

3.4. Media

Having a multitude of artistic media at our disposal was instrumental to the co-construction of meaning between participants, as these provided scaffolding to integrate diverse perspectives into the final product. Participatory artistic processes served as engagement catalysts (C4.1), inviting participants to interact in novel ways and to offer up suggestions. As one musician put it, these practices ask for one’s ‘humanness’, creativity, and personal experience – providing a liberating space in which there are no right or wrong answers.

A pivotal moment in the co-design process was when a PwP shared her poem ‘Sur le fil’ (On the brink), in which she describes her experience as that of a tightrope walker. This resonated with many participants and crystallised the group’s attention around a metaphor that could be approached from diverse viewpoints. In reflecting on how her poem became a scaffold for the final performance, the author expressed:

[…] I was really happy to share my words and have them experienced by other people. And above all, that it’s out of my hands. That at some point, people take what you do, but that’s part of creation. – Laurence (translated from French)

In this way, the poem acted as a boundary object (C4.1), simultaneously allowing for conceptual convergence and an openness of interpretation. The translation between artistic media (C4.2) further enabled the co-construction of meaning, as each provided a new lens through which to explore an idea. Participants highlighted the unique affordances of each media (e.g. music, dance, circus, poetry, film), and how artists practicing these may interpret the same source information differently. In reflecting on the dancers’ ability to convey the movement qualities of a PwP, one participant said:

The dancers capture the movement right away and are able to convey it and show it to us. […] it’s almost like re-transcribing what someone with Parkinson’s has in their head, you know? And that’s very, very complex. That’s what dance allows you to do. – Antoine (translated from French)

This process of re-transcription was paramount to creating a performance that all participants agreed represented our collective understanding of Parkinson’s disease, without parodying or caricaturizing the disease experience.

4. Discussion

Our findings highlight how the process, space and media employed in Piece of Mind enabled participants to share factual, experiential, and embodied knowledge of Parkinson’s disease, and to collaborate on the joint goal of representing these in an artistic performance. We demonstrate how participants moved from a place of questioning and individual focus to a blurring of boundaries and sense of togetherness, supported by an embodied approach to participatory sense-making, a virtual space conducive to shared experiences, and a multitude of artistic media to scaffold the co-production of meaning and a hybrid understanding. While the latter are regularly applied in co-creation, we highlight their use within the narrower context of co-design, in which the generative potential of artistic media was constrained by our pre-determined desired outcome (Harlow et al. 2023).

Our unique combination of creative movement and artistic media in a virtual space, with the goal of co-producing an artistic performance as opposed to a technology or material artefact, is an important contribution to the growing literature on embodied and participatory sensemaking in co-design. While originally conceived to support co-design technology for face-to-face embodied sense-making, our use of process, space and materials aligns with and expands on the seven principles proposed by Hummels and van Dijk (2015): social situatedness, scaffolds, traces, interactive imagery, dialogical system, 1^st person perspective and catalysing engagement.

4.1. Process

The deliberate choice to begin each session in creative movement facilitated relationship-building and trust through play, and allowed for an exchange that could not take place in verbal communication. This approach invited the ‘the embodied, the sensuous and the emotional to the forefront’ (Boydell et al. 2016, 690), and allowed us to access experiential and tacit forms of knowledge that elude words (Kothari et al. 2011; Nimkulrat et al. 2020). Getting to know one another in movement filled the gaps where words may fall short. This was particularly true in the present context, in which we had Anglophone and Francophone participants and where the subject of inquiry was experiences that are deeply rooted in the body. This aligns with previous work on a participatory design process with people with aphasia: the authors used gesture and hands-on activities to adapt to the constraints posed by language challenges, allowing them to observe communication between participants and consult people with aphasia as experts of their own experience (Galliers et al. 2012).

Even when language does not pose a barrier, grounding participatory approaches in embodied and multisensory experiences may surpass what is possible in a group discussion. In a study on enhancing democracy and communicative planning within an industrial suburb of Antwerp, Devos and Loopmans highlight how a ‘dialogue through walking’ activity and a ‘phenomena-map’ illustrating tensions within the neighbourhood led to an intersubjectivity where ‘mutual understanding is embedded in shared experiences and bodily sensations’ (Devos and Loopmans 2022, 324). They argue that this is crucial for coming to a place of Einstimmung between diverse stakeholders – that is, the fusion of voices emerging from an ‘experiential confrontation of different lifeworlds’ (Devos and Loopmans 2022, 336). In line with this, our embodied approach established common ground between participants, supported joint exploration and learning, and facilitated an arrival at a shared understanding from multiple viewpoints.

The blending of perspectives in pursuit of a shared goal is facilitated by blurring roles and boundaries between self and other, especially when taking an interdisciplinary and embodied approach to co-design (Groth et al. 2020; Nimkulrat et al. 2020; Sanders and Stappers 2008). The initial uncertainty participants reported regarding their contribution is not uncommon, particularly when coming from research/design approaches where roles are prescribed and imbued with power dynamics (Ball et al. 2021; Malpass et al. 2023; Parsons et al. 2017). While potential imbalances still require careful consideration (Phillips, Bee Christensen-Strynø, and Frølunde 2022), a co-design process provides an opportunity to renegotiate roles as ‘part of the dynamic exchange of expertise’ (Le Dantec 2010, 209). As highlighted in Leanne’s quote, the active listening apparent in Piece of Mind emerged in part from participants relying on one another to fill in the gaps of their knowledge and experience. This echoes what Fischer (2000) terms the symmetry of ignorance; that is, the distribution of specialised knowledge across design participants, which can form the basis of social creativity and a shared understanding.

Unpredictability may be a facilitator – rather than a hindrance – to participatory sensemaking. Participatory research and co-design require those involved to embrace its emergent nature (Boydell et al. 2016; Weerman and Metze 2021), and building in a degree of surprise may in fact help ‘carry people away’ towards a shared learning experience (Devos and Loopmans 2022; Ellsworth 2005). Nevertheless, the project facilitator must hold the various pieces in mind, crafting a coherent narrative to guide participants through the messiness (Sanders and Stappers 2008; Weerman and Metze 2021). This responsibility is both conducive to and contingent upon the participants’ trust in the process and sense of ownership over the outcomes (Voorberg, Bekkers, and Tummers 2015), both of which were highlighted in the participant interviews. Importantly, the oft-reported feeling of being pushed outside one’s comfort zone in the process may be a necessary component for arriving at a place of shared understanding (Ball et al. 2021; Groth et al. 2020).

4.2. Space

Although co-designing online came with logistical challenges, it facilitated accessibility (e.g. participants joining from home), documentation, and a sense of togetherness. Surprisingly, the Zoom platform acted as an equaliser: by forcing us into little squares on the same screen and confining us to one speaker at a time, it eliminated the tendency we have in physical spaces to ‘size one another up’ or strike up side conversations. Indeed, the screen became a source of joint attention, which Tenenberg and Fincher (2022) argue is crucial in co-design thinking and learning. In the present context, the use of an embodied approach in a disembodied medium allowed participants to visually attend to their own movement in relation to the group; this shared felt and visual experience likely contributed to the strong sense of togetherness (Basile, Lecce, and van Vugt 2022).

Overall, our use of Zoom facilitated the creation of a ‘hybrid space’ that is not owned by a specific group, thereby loosening power relations and enabling mutual learning and co-creation (Slegers, Duysburgh, and Hendriks 2015) – aligning with the principle of social situatedness (Hummels and Van Dijk 2015). However, virtual formats may also act as a disservice to group connection (Satama, Blomberg, and Warren 2021) and co-design (Tenenberg, Socha, and Roth 2016), and even a source of exclusion (Sawchuk and Lafontaine 2015; Stephens et al. 2023). In our case, managing the tension of shifting from a fully virtual to hybrid collaboration required deliberate strategies to ensure online participants were updated regularly continued to be actively included in the process. Similarly, planning for virtual co-design necessitates tailoring the approach specifically to online collaboration, and recognising the facilitator’s role in establishing online etiquette and creating a shared imagination space (Malpass et al. 2023; Vaughan et al. 2022).

4.3. Media

Analogue tools and artefacts are established in co-design as a way to enable hands-on thinking (Peters, Loke, and Ahmadpour 2021; Poulsen and Thøgersen 2011; Smit et al. 2022), serving as boundary objects when working with different knowledge bases, experiences and abilities (Groth et al. 2020; Kuusk, Tajadura-Jiménez, and Väljamäe 2020; Raman and French 2022). In a recent review of hybrid tools to support co-design, Smit et al. (2022) identify four important properties of physical and digital tools for embodied, participatory-sensemaking: tangibility (boundary objects, scaffolds and engagement catalysts that contribute to creativity through bodily, skilful interaction); commonality (the rate with which individual understandings of participants overlap); visual representation (‘containers of information’ by which insights are communicated between participants); and ambiguity (the freedom of interpretation and ability to attribute personal meaning).

While much of the Piece of Mind process did not rely on physical or digital tools per se, these properties are apparent in the multitude and diversity of artistic media we employed, including dance, circus, theatre, music and poetry. The poem ‘Sur le fil’ was immediately tangible in that it evoked many participants’ bodily experiences (whether as a PwP or a circus artist) and acted as an engagement catalyst (Hummels and Van Dijk 2015), inviting participants to build on the metaphor in music and movement. It served as a point of commonality, resonating with many participants’ lived experiences and becoming a through-line in working towards a joint goal. The importance of visual representation was apparent when the performers experimented with bringing the poem to life, thereby engaging with it from a 1^st person perspective. When the first attempts were incongruent with the author’s intended meaning, this steered us closer to a more authentic representation. This is particularly imperative when the topic at hand is an experience that is not shared by all participants, as echoed in other arts-based approaches to representing illness and disability (Demir, Kuusk, and Nimkulrat 2022; Dokumaci 2018; Rossiter et al. 2008; Woodgate, Zurba, and Tennent 2017). Lastly, the ambiguity inherent to the arts (Boydell et al. 2016; Rieger and Schultz 2014) was amplified by the act of translating from one medium to another, inviting participants to add their own layers of interpretation, while simultaneously enabling the author to clarify her intended meaning. This example highlights the strength of using multiple artistic media as scaffolds, in which the resulting traces track iterations of interactive imagery to support a dialogical system (Hummels and Van Dijk 2015). Thus, artistic media engaged the senses to facilitate a process of coordinations and breakdowns that ultimately led to co-constructed meaning (De Jaegher and Di Paolo 2007): as an idea was handed from one person to another, each shaped a piece of a multi-faceted picture of the lived experience and scientific research of Parkinson’s disease.

4.4. Important considerations

Several considerations warrant discussion. Firstly, the interpretation of the findings is shaped by the first author NK’s positionality as project lead and influenced by her former training both in neurodegenerative disease research as well as in dance and circus arts. Both NK and RB, who led the movement activities over Zoom, were directly involved in the activities described throughout and thus personally impacted by process. Additionally, given the self-selection bias in the recruitment for Piece of Mind and the subsequent interviews, personalities contributed to the success of the co-design process. Individuals drawn to Piece of Mind may have been particularly creative, open-minded and empathetic from the outset; indeed, as one participant remarked, both researchers and contemporary artists are often considered ‘professionally curious’. Moreover, the specific context of the COVID-19 pandemic cannot be ignored: this facilitated participation from those whose schedules became more flexible and contributed to an enthusiasm to build community at a time where many were facing social isolation. While these factors highlight the irreproducible element of serendipity (Ball et al. 2021), they also point towards a continued need to lower barriers to inclusion in participatory research and co-design (Juliana Van Olphen et al. 2009; Rycroft-Malone et al. 2016; Stephens et al. 2023), and to study the key elements of process, space and materials that underlie successful collaboration. Lastly, studying embodied experiences of co-design would benefit from more embodied research methodologies than employed in the present study, such as integrating tangible objects and other sensory prompts into the interview process and/or conducting a sensory ethnography (Cox and Guillemin 2018; Fleetwood-Smith, Tischler, and Robson 2021).

5. Conclusion

Our qualitative study considered the context, strategies and materials underlying the co-design process in Piece of Mind, identifying both the intentional and emergent components that enabled multiple perspectives to blend in a collective effort. We describe the specific characteristics of our process and product, most notably the use of an embodied approach in a shared virtual space, the affordances of multiple artistic media, and the co-design of an artistic performance based on scientific and experiential knowledge of Parkinson’s disease. This distinct combination provides a novel context for principles of participatory and embodied-sensemaking that have previously been applied to face-to-face interactions and the co-design of technologies. This work enriches the theoretical terrain of participatory sense-making and provides useful landmarks to guide co-design amongst diverse stakeholders.

Acknowledgements

The authors would like to acknowledge the significant contributions of the Piece of Mind participants, whose enthusiasm, talents, reflections, and enormous efforts were crucial to the project’s success. We would additionally like to thank Cristian Zaelzer-Perez and Louise Campbell, who facilitated workshops art-science collaboration and participatory music workshops, respectively. We appreciate the input from Charlotte Maschke, Raphaël Lavoie, Béatrice Pelletier-de Koninck and Naomi Askenazi from the BIAPT lab in translating French-language quotes to English.

Disclosure statement

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

Data availability statement

Data will be shared upon request to the authors and the implementation of a data sharing agreement between institutions.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/15710882.2024.2361286.

Additional information

Funding

The research received financial support from Healthy Brains Healthy Lives, Canada First Research Excellence Fund, Canadian Institutes for Health Research, Parkinson Québec, and Mitacs. The creation and production of the performance was funded by Conseils des arts et lettres de Québec, Conseils des arts de Montréal, and Etude partenariale sur la médiation de la musique.

Appendix A.

Semi-structured interview guide

1. Questions regarding collaborative process

   • Please describe your participation in this project.

   • What were your expectations going into the project?

   • What did you learn from the process, if anything? In other words, what were some key take-aways?

   • How do you think the use of the arts and a creative approach shaped knowledge exchange within this project?

   • What could have been better? Can you name any tensions or barriers you felt in the process?

2. Questions regarding the outcome (performance)

   • How did the performance compare to what you expected?

   • [For performers] Did performing in the piece bring any additional challenges, reflections or insights you would like to share?

3. Role-specific questions:

   • [For researchers] Did participating in this project give you any new ideas, motivators, etc. for your research?

   • [For artists] Has participating in this project changed your artistic practice in any way?

   • [For participants with lived experience] Has participating in this projected changed how you view your personal experiences, and/or scientific research on Parkinson’s disease?