The Time Moving exhibit: Exploring perceptions of time in end‐of‐life experiences

Abstract Background Conversations about end of life rarely take place beyond healthcare spaces and in advance of imminent death. As the Canadian ageing population increases and new policies and options emerge for end‐of‐life choices, there will be an increasing need for supports for decision‐making on end of life. Time Moving was a participatory art exhibit created to engage participants in reflections on end‐of‐life experiences and the ways in which their perception of time fluctuated within these moments. Design A participatory and constructivist approach informed decisions on exhibit design and analysis. The Time Moving exhibit was installed in a downtown university hall for 10 days during the 2019 annual DesignTO festival, open to all members of the public. The exhibit was used as the primary method of data collection. There were three prompts informed by concepts from prior work on time perception. Participants were invited to respond by drawing, writing or constructing. Outcome There were over 120 contributions of participants over the duration of the Time Moving exhibit. These contributions revealed new insights related to temporal perception and end‐of‐life experiences. Participants shared their perception of time during end‐of‐life experiences in a variety of ways, revealing a diversity of perceptions of time beyond calendar and clock time, including time experienced as a spiral. Conclusions The insights on time perception highlight opportunities for approaching dialogue on end of life and in grief support, and for exhibit as a mechanism for research and education. Patient or Public Contribution As a public exhibit, over 120 people contributed ideas, personal stories, drawings and other creative outputs to the exhibit. An estimated 250 people visited the exhibit.


| INTRODUCTION
Like other nations, Canada is on the cusp of experiencing a peak population. Baby boomers are ageing, signalling that the number of people aged 65 years and older will increase dramatically over the next 20-30 years. 1 As Canada's population ages, the demand for end-of-life care will grow. It is estimated that by 2031, about 350,000 people will die each year in Canada-up from 250,000 in 2001. 1 The research indicates that coordination of responsibilities and tasks that support all aspects of a dying loved one's needs is a major concern for families and unequal distribution of tasks can be a source of interpersonal conflict. 2,3 With a sensitive topic like death and dying, a common issue is knowing how to start conversations on planning, needs and wishes. 4 Conversations about experiences with dying have very few places in which they can occur commonly and without judgement. 5 Despite this barrier, it is widely accepted that meaningful reflections on death and dying before the end-of-life process begins are essential for supportive decision-making [6][7][8] including advanced care planning. In end-of-life circumstances, perception of time can change as temporal awareness shifts, priorities change, illnesses advance and capacity and physical constraints arise; this in turn can make decision-making harder.
The literature on participation in decision-making at end of life suggests that three areas need to be in place for effective participation in everyday (personal hygiene decisions) and longer-term decisions: information sharing with the patient; accepting prognosis; spirituality; and sense of well-being. 9 Under emotional stress (absence of sense of well-being), patients can perceive a slowing of time, overestimating the duration of an event, 10 again complicating decision-making. End-of-life decision-making for some patients is further complicated by an orientation to recurring events or memories as markers of time. 11 This is also seen with palliative cancer patients in pain and dementia patients, 12 where memory events (dementia) or pain events (cancer) dominate time perception and can be experienced as cyclical. Decision-making in these circumstances might then involve revisiting options and decisions. 13 Research on decision-making and brain function further indicates that modula-   If the public had questions about their participation, facilitators were available in person at the site during exhibit hours, as well as during scheduled times. In the event that the exhibit triggered difficult emotions or sensations, postcards with supportive mental health resources and local organisations (Death Cafe, 44 Death Over Dinner 45 ) were openly available at the site and facilitators were on hand to direct participants to these resources. Facilitators otherwise did not prompt or interact with participants. The researcher's email was included on this postcard, for participants to ask further questions, request a copy of the results or to inquire into future research activities. This study received REB approval from the OCAD University institutional review board: approval #101472.

| Setting
Time Moving was exhibited as part of an annual death event series in Toronto, Canada. The Dying. team organized a diverse set of events and activities designed to bring dying and death into conversation.
The Dying. event series was a part of the larger city-wide design festival: DesignTO. 41 Time Moving was mounted in the main hall of OCAD University, Toronto, for 10 days (the duration of the DesignTO festival).

| Data collection
Data were contributed by members of the public throughout the festival. The responses were then carefully secured (on the large board) and collected at the end of the exhibition. All responses were then recorded by the research team, including all markings on the installation.

| Data analysis
To analyse Time Moving, we used an inductive qualitative approach for text-based contributions 46  F I G U R E 2 Process photos from the analysis phase was undertaken with researchers switching data type. At this stage, visual patterns were redrawn into a common visual format (black ink on white card). This process enabled foregrounding of the shape of participants' perceptions of time. Following this step, all researchers reviewed the provisional groupings and contributed to interpretation and descriptions of these groupings. Three researchers then separately wrote a description of the largest panel, rewriting and reviewing each of these into one descriptive interpretation. It was during this process that the term tapestry emerged as an appropriate description for the interwoven nature of participants' many contributions to the third panel.

| What does time look like?
The first panel of Time Moving (Figure 3) asked participants to respond to the following prompt: People have different ways they think about time. Choose or draw a shape that looks the most like time to you.
In reviewing the responses, we found that participants chose primarily to draw but also to add descriptive adjectives. We identified various categories of time that were used by participants to describe their temporal perception in relation to end of life (the topic of the exhibit). We identified four categories: (1) unsettling, (2) supportive,  (1) Loose linear and chaotic timelines. The structures in this category are hanging loosely, but begin to take on a linear form at some point in the shape. The forms remain abstract and organic as the shapes made with the materials are free flowing and lack a defined geometry ( Figure 6).  Wolstenholme et al. 51 have discussed the role that participatory design can play in supporting the processes of person-centred care.
Having conducted a participatory design session with nurses and older adults, analysis found that the participants expressed sentiments that matched with a majority of four tenets of McCormack and McCance's person-centred care. 52 These tenets are knowing self, engagement, working with a patient's beliefs and values and shared decision-making and involvement in care. 9 We suggest that Time F I G U R E 8 Highly structured shape on tapestry, and sketch example. Moving also presents an opportunity to encourage conversation on person-centred care.

| Participatory exhibit as education
In healthcare education, exhibits can be used to create new experiential learning opportunities and support interdisciplinary education on a wide range of health perspectives. 27 The installation encourages cocreation of knowledge and dialogue, which can be useful to support interdisciplinary dialogue in healthcare. Providing education on death and dying requires precious time and space in the healthcare curriculum. Such curriculum-focused interventions may focus on concepts and frameworks of death and dying, such as the Stages of Grief, 53 which may serve to support a theoretical understanding of the concepts. While not a specific aim of this study, Time Moving may serve to support educational objectives for end-of-life care training. By engaging in Time Moving, participants were able to reflect on experience, a key tenet of experiential learning. 54 The knowledge coproduced within Time Moving suggests the depth of the design opportunities within this context, and the potential for the use of exhibit applied to other health education topics.

| Participatory exhibit as research
The use of exhibit as a mechanism for data gathering for time perception research is a novel approach and one that yielded a large amount of qualitative data. Using traditional qualitative methodologies when exploring sensitive subject matter can be challenging for both the researcher and the participants. Researchers may face challenges in remaining objective, and not being swayed by emotional recounting(s) from participants. 55 Participants themselves may face emotional stress in sharing information from these personal experiences. 55 Open participatory exhibits offer participants a unique opportunity to engage in a dialogue about sensitive topics, like death and dying. 56 Participatory exhibitions are an anonymous, invitational way to enable public participation in research. 57 Participatory exhibitions can further be a creative way for researchers to engage the public in knowledge mobilisation. 42,58 Researchers can use exhibits to embody and present knowledge from established research and theory to the general public. 54 How the public then engages with the materials within the exhibit has the potential to produce new knowledge and creates a space in which the public can explore and ask questions about complex problems. The exhibit itself becomes an artefact of this knowledge development process. 57 In this case, Time Moving became more than a novel device for data collection. It became a tapestry of knowledge, insights and directions for future exploration that remains intact for future exhibits. Time Moving builds on exhibit and arts-based health research 31 and a growing interest in exhibit as a mechanism for both research 56 and knowledge mobilisation. 58

| CONCLUSION
Death and dying is a sensitive topic that is often avoided in everyday conversation. 4 To open these conversations, we designed