Re-Imagining Pain Communication: Thesis

Re-imagining Pain Communication

The design, creation and implementation of a new tool to communicate pain

Amy van den Hooven MA in Design

Faculty of Fine Art, Music and Design University of Bergen

This is a research through design project that aims to improve the way that we both communicate and understand pain. Chronic pain involves a complex and unique story for each person, making it crucial that we are able to both send and receive messages that communicate one’s pain. Through collaboration with people who live with chronic pain, medical professionals, therapists, designers and artists this project aims to design a tool kit that can give a voice to those in pain and allow a more co-creative process between senders and receivers. In addition to the development of communication tools, this project aims to create a greater conversation about chronic pain that can shift the way that we understand pain towards a direction that embraces its complexity. The design outcome focuses on re-imagining tools for communication and providing a preferable method of pain communication for the future.

Acknowledgments

This project could not have been possible without the support of many people. First, I would like to acknowledge my academic advisors, Mikkel Wettre and Hilde Kramer, who provided invalu able support and feedback in the research and development of this project. And other faculty, Fredrik Salhus and Petter Knudsen, who helped with the conceptual development and physical production.

A special thank you to the partners of this project, which include the ten individuals who live with chronic pain that were involved in my project from 2019 to 2021. Thank you for sharing your stories openly and helping develop a new approach to pain communica tion. I would also like to acknowledge Cecilie Meltzer, Professor of Art Education and Art Therapist from Oslo Met, who specializes in creative communication techniques, and Michael Burke, who is both a therapist and lives with chronic pain. They were partners that provided me with guidance in the process of re-imagining pain communication.

Thank you to my classmates, Thanee, Ted and Lena, who gave input and encouragement in many group zoom conversations during COVID. And, most importantly, thank you to my family. They spent time talking over many aspects of the project with me and provided endless support.

An Open Invitation Personal Motivation

6 Why Communication? Need for a Shift Design Objectives Methodology

Design for Change

We will all experience pain at some point in our lives, for some it will stay for a short period, but for many it will become chronic. It is evident that the number of people that are experiencing long last ing pain is becoming more and more common. At least 10% of the global population lives with chronic pain (Jackson et al.). In Norway alone, it is reported that 30% of the population lives with chronic pain (NIPH). And in Canada, where I am from, it is reported that approximately 20% of the population suffers from chronic pain (Canada Health). However, these numbers are not true reflections of the situation, as many people are also suffering silently.

For this project, I am delving into a topic that is not only wide spread, it is also personal. Chronic pain is something that has been present in my life and the life of so many close to me. Through this experience, I have learned that one of the biggest barriers to people finding the help they need is the difficulty in communicating the complexities of their pain (Whitten et al. 41). With so many people suffering from something that affects many aspects of one’s life, there is a need to find ways to better communicate and provide more un derstanding about pain.

Design is a powerful tool to work through the complex topic of chronic pain and the struggles in trying to communicate it. Design ing with a goal to create positive change means that this project will look at issues of pain communication at both personal levels and a systemic level. Through an in-depth design investigation, this project hopes to unveil insights that will lead to a greater conversation about chronic pain and bring awareness to it as a whole. With these in sights, this project will re-imagine ways of pain communication.

An Open Invitation

Throughout this process people have asked, “is this for people with emotional or physical pain?” The simple answer is “both.” This proj ect attempts to decrease the divide between these “two pains,” and take an approach to provide more insight into both physical pain, emotional pain and many other complex layers that are involved in chronic pain. Even though the focus of this project is on those who suffer from chronic pain, I believe that this project can help any person that is trying to communicate their pain, whether they have lived with it for a short period or long period.

This project is not only focused on the person in pain, as communi cation requires a comprehensible message to be sent and a receiver who can understand the message. Therefore, this project invites those who are the receivers of pain messages, both inside and outside of medicine, such as loved ones, doctors, and therapists, just to name a few, to become a part of this project. And for any other discipline, whether it is in design or not, to become a part of an open conversa tion about pain.

Personal Motivation

At the age of 19, I was diagnosed with an autoimmune disease that led to a variety of different symptoms that left me in daily pain. Pain was not something foreign to me, as my sister, aunt and grand mother have lived with pain due to autoimmune diseases. Even knowing this history of chronic illness in my family, when I first felt the onset of pain at the age of 17, I didn’t say anything. I didn’t know what to say and I was afraid to talk about it.

I felt masked in my pain. It was pain that was not visible to anyone else, and my ability to communicate something that was not tangible was difficult. In Listening to Pain, Dr. Daniel Biro writes that pain is “amorphous,” meaning that it has no form, making it difficult to grasp (Biro ch. 10). The metaphors like “burning or stabbing” that came out of my mouth and the areas I circled on a pain map while visiting the doctor only described the surface level of my pain. I knew that there was so much more to it, layers that were physical, emotional and social. The physical pain impacted my ability to function in my environment or even find a comfortable position in my bed. And the emotional pain left me traumatized from the past and fearful of what the future might hold. I couldn’t find any way to communicate the complexity of what I was going through. I was trying to understand my own pain. And if I was able to communi cate my pain would it be received or understood by someone else?

Through this journey of living with chronic pain, I have met many people along the way also living with pain. It was evident that it was not only me that was struggling. I witnessed the difficulties of others around me trying to communicate and understand their own pain, and the struggles that resulted because of this. I witnessed how people were not able to get the help they needed when their pain was not received or understood. I witnessed just how unique pain is to each person.

In the Land of Pain, Alphonse Daudet chronicles about his experi ence of living with daily pain. He writes, “Each patient discovers his own...and the nature of pain varies, like a singer’s voice, according to the acoustics of the hall (Daudet 15).” However, these voices are often not being heard or understood. This project hopes to peel away the layers of the masks that muffle these pains, and to provide an opening where the uniqueness of each person’s pain can be seen and heard (see figures 1-3)1.

1 van den Hooven, Amy. Masked in my Pain. 2019, University of Bergen Faculty of Fine Art, Music and Design, Norway. Made in course: MAD-345/Study Trajectory, Professor Dora Isleifsdottir. Sept. 2019.

Fig. 2

Peeling away the layers

Fig. 1

Fig. 3

Finding an opening to voice my pain

Photos: Alterskjær, Irene. 2019.

Masked in my pain

Research Question

How can design improve the way pain is communicated?

Photos: Alterskjær, Irene. 2019.

Fig. 4

Fig. 5 My “Power Pills” Pills that meet my needs

Why Communication?

Communication is the bedrock to providing important insights into what can help someone in pain, especially when pain is something so elusive and can’t be captured in any medical test that exists today. In “Doctor-Patient Communication,” the authors state that commu nication is the “central component in the delivery of health care.” Research has shown that a good communication experience can give people more autonomy over their healing, better mental health, improved treatment plans and the ability to manage their pain (Ha et al. 38-39).

Along with providing important insights, a positive communication experience can help a person feel more heard and hopeful for the future. One participant in this project shared,

“When my doctors and family members are able to hear and receive my pain it makes all the difference. Even if they don’t completely un derstand it, it still gives me hope. And hope is essential when living with chronic pain.”

Even though communication is vital, it is often not taking place or the complexities of chronic pain beyond the biological aspects are not being communicated adequately through the current tools being used, such as pain maps and scales. This means that many people in pain and the problems they face may go unnoticed, with not only medical professionals, but also loved ones. This has led to many consequences, such as the over prescription of opioids (Gjesdal et al. 523) and treatments that are not meeting the holistic needs of the person in pain (Ha et al. 39). In order to improve the lives of those in pain, it requires a communication experience where the complexities of one’s pain are received and better understood.

In the first stage of this thesis, I created an imaginative artifact (see fig. 4 and fig. 5)2 to reflect what can be possible when one is able to communicate the complexities of their pain. It has the potential to reveal one’s unique needs and open up many new pathways to what can help someone. These are an example of my Power Pills, which symbolize different personal needs I have. These needs are only revealed when the complexity of my pain is communicated and understood.

2 van den Hooven, Amy. Power Pills. 2019, University of Bergen Faculty of Fine Art, Music and Design, Norway. Made in course: MAD-314/Power Object, Professor Charles Michalsen. Aug. 2019.

Need for a Shift

Delving into the initial research of this project, which will be discussed in the next section of this thesis, allowed me to see that in order to improve pain communication it requires a systemic paradigm shift in the way pain is communicated and therefore understood. The existing approaches to communicating pain were built off of biomedical ways of thinking that date back to the 19th century (Bourke), which has resulted in tools being used that often only focus on the biological aspects of pain and try to objectify something that is subjective.

Once tools and techniques become embedded in a profession or a society as a whole, it is easy to rely on “over learned behavior,” such as using the same tools over and over again (Epstein ch. 11). This can be a problem when existing tools, such as for communicating pain, have been built upon a historical understanding of pain. The tools used therefore reinforce old ways of seeing. How are you supposed to gain new insights or help people feel heard if you are relying on the same tools that have been used for over one hundred years?

It is important to note that there is a need for a shift that does not abandon valuable knowledge given through biomedicine, but there needs to be an expansion of the communication model towards one that embraces and communicates the complexities involved in chronic pain (see fig. 6). Unlike acute pain, chronic pain has many layers involved, such as biological, psychological and social, just to name a few (Gjesdal et al. 523).

In Range, David Epstein states that “there are no tools that can’t be dropped, re-imagined, or repurposed…Even the most sacred tools… (Epstein ch. 11). In the world of chronic pain, I believe that there is a need to expand our understanding of pain and to explore new ways of communicating.

Fig. 6 An expansion of the biomedical model of pain communication towards one that can communicate and embrace the many “pieces” that are involved in chronic pain.

“there are no tools that can’t be dropped, re-imagined, or repurposed... even the most sacred tools...”

- David Epstein, Range

Fig. 7 Various experiments and insights from the Co-Pain Lab interviews and workshops

Design Objectives

This project will be focusing on design objectives that will help create a shift towards a preferable model of pain communication. It takes inspiration from both science and art in rethinking com munication. The design process will aim to illustrate how through design new ways of understanding and communicating pain can be achieved.

The design objectives for this project are divided into three catego ries: Developing the Co-Pain Lab to foster a collaborative design process, designing a pain communication tool kit, and illustrating how this tool kit could be disseminated in the future.

1. The first objective is the development of the Co-Pain Lab. In this lab we speculate the future of pain communication, share experienc es of living with and communicating pain, and define what a prefera ble approach to pain communication could look like. This lab weaves together voices from inside medicine and outside medicine, reflects on insights from both science and art and explores new possibilities for pain communication (see fig. 7).

2. The second objective is to take insights from the Co-Pain Lab and develop a tool kit that can communicate the complexities of chronic pain. This tool kit will aim to create a visual and tactile language that can communicate one’s pain. Making the experience playful, collab orative and hopeful are key elements that this tool kit will seek to incorporate.

3. The third objective is to illustrate a concept for the “The Clinic of the Future” where the use of this tool kit is at the center of the service provided. This last objective aims to show how this tool kit could be disseminated and help foster a shift in pain communication.

Methodology

A Collaborative Approach

The foundation for this research has been built out of empirical knowledge through interviews, workshops and observations made throughout the design process and my own experience living with chronic pain. This research was then further built upon with second ary research gathered from theoretical knowledge in journals, articles and books.

The project was carried out in a collaborative and iterative design process. I decided to mix and match different methods to create a design process that is unique to this project, and takes into consider ation both the goal for participation, while also allowing safety and empathetic processes as it is dealing with a sensitive subject.

This design process allowed space for play, reflection, imagination, and speculation for a brighter future. It is defined by three phases, with each phase incorporating a number of steps. The phases include The Initial Research, The Lab and The Results: The Clinic of the Future (see. fig 7). In this paper, I will guide you through the design process by discussing each step that led to the final insights and out come of this project (see fig. 8).

Key Voices

This project is centered around a process that aims to bring together the voices of people within the medical field, such as medical profes sionals, and outside the medical field, such as therapists, designers, artists and most importantly those that live with chronic pain. It was important to weave these voices together to envision new approaches to communicating pain.

Fig. 7 This project is defined by three main phases, The Initial Research, which provided valuable research for experiments that took place in the second phase called The Lab. And, the final phase called The Results.

Shift the Future

Refine & Produce

Test

Ideate

Ideate The Lab

Define Themes

Find Connections

The Results Open Voices

Speculate Futures

Understand the Past & Present

Create the Foundation

The Initial Research

Research Question

Fig. 8 A zoomed in diagram of the design process to show the ten steps included in the Initial Research, The Lab and The Results phases. Stages of convergence and divergence took place throughout, along with iterative ideation and testing.

Developing the Design Process

When developing the methodological framework that would guide “how” I approached my design research, I took inspiration from common design thinking frameworks, such as IDEO’s field Guide to Human-Centered Design, Stanford University’s Institute of Design (d.school), and the Double Diamond method inspired by Bela H. Banathy’s divergence and convergence method. All of these methods have many overlaps and a similar rational of being human-centered, collaborative, iterative and empathetic in their approach, which are important values that I have incorporated into this process. 1

Looking to these methods in developing the strategy of this project was helpful because they provide a step-by-step framework to help investigate and understand a very complex issue like chronic pain and the way it is communicated. However, I felt that these methods did not encompass the full breadth of what I am trying to accom plish within this project, leading me to expand and incorporate other methods into the process.2

When I started to ask “why” I design, it is about more than going through steps to reach a final solution. It is not about “solving a problem,” but rather using design in a way that can lead to discours es about complex issues, which can then help lead to positive change. This distinction is one made by Bruce and Stephanie Tharp, the authors of Discursive Design: Critical, Speculative, and Alternative Things, where they establish the new field of discursive design. In this book they discuss how the methods proposed by IDEO and the d.school are applicable to discursive design, but that there is still an important distinction. They write that these approaches are more “tactical and operational,” and deal with more the “how” we design, but not so much the specific issues of “why” we design. The authors write:

Discursive design has a different agenda than the more oper ational design processes, in that other mindsets and methods are at play because the key goal is to design artifacts3 that cre ate a discourse (Tharp et al. 155).

They state that it is through this discourse that a change in mindsets can occur, which can lead to designing preferable ways of doing.

3 In discursive design an artifact can both be a tangible object or something in tangible, which they define as “immaterial artifacts.” This can include the design of a system, service and interaction, just to name a few (Tharp et al. 20).

Designing for Discourse

Discursive design is an avenue that can help with the goal of re-imagining what pain communication could look like and creating a “shift” through design. Designers that work within the realm of discursive design aim to design artifacts that will challenge existing ways of seeing, inspire reflective conversations and create visions of the way things could be. The methodologies used in discursive design will help guide me through different phases of the design process and will provide valuable terminology to help support my process.

In Discursive Design: Critical, Speculative and Alternative Things, the authors Bruce and Stephanie Tharp write, “the fundamental operational goal of discursive design is reflection; only after this can higher order goals of achieving new preferred attitudes, behaviors, beliefs, values, actions, and so on occur (Tharp et al. 112).”

Discursive design is defined by two domains, one called “practicebased” and the other “research-based.” I will explore the design of objects and tools within these different domains. One example of “practice-based” is the design of tools for the use of discourse in clinic settings. This domain is just beginning to develop, making this project an exciting endeavor to further develop this new area of design and inspire more innovation.

The second domain, called “research-based,” uses objects, such as de sign probes, to gather research that can provide insights into further development of products or services, or to collect new knowledge that can provide insights for fields beyond design (345). Throughout this process, I will design objects that are used to engage people and bring awareness to different topics related to pain communication. I will also use design probes to collect insights that will help guide the development of this project.

By blending together methods from discursive design that seek to inspire discussion, reflection and imagination, along with other de sign thinking approaches, such as human-centered methods offered by IDEO and the d.school, I hope that it will lead to a rich design process and outcome.

Initial Research

The Initial Research is focused on discovery and is the first phase of the design process developed for this project. This phase is a collec tion of insights, ideas and observations from interviews, journals and a workshop. When working with a complex topic like pain, it is important to take the time to investigate key terms and concepts that are used through out the process. I also reflect on the past and present methods and tools used to communication pain. Collecting this initial research is the first stepping stone in order to re-imagine ways of communication.

This design phase includes two steps: Create the Foundation and Understand the Past and Present.

Overview of Key Terms

Total Pain: Biomedicine:

Sender: Receiver:

I nside Medicine: Outside Medicine:

Dame Cicely Saunders defined the concept of total pain as “the suffering that encompasses all of a person’s physical, psychological, social, spiritual, and practical struggles.” Inspired by the work of Saunders, this project argues that “total pain” must be communicat ed in order to understand the complexity of chronic pain.

Within Western Medicine, biomedicine is the leading paradigm that is used. As stated by the Meriam-Webster dictionary, it is “medicine based on the application of the principles of the natural sciences and especially biology and biochemistry (“Biomedicine”).”

A person that is delivering a message. In this project, the sender is a person in pain who is communicating their pain to the receiver.

A person that is receiving a message. In this project, the receivers can be people both inside and outside of medicine who receive messages about pain.

In the framework of this project, “inside medicine” refers to dynamics that take place within the medical realm, such as clinics and hospitals. This includes communication dynamics with medical receivers of pain communication, such as doctors, psychologists and nurses, just to name a few.

In the framework of this project, the term “outside medicine” re fers to dynamics that take place in any place outside of the medical realm, such as at home or a therapist’s office. This often includes communication dynamics with receivers of pain communication, such as support groups, therapists and people within one’s inner circle, such as loved ones, friends and family.

Throughout history tools were made by the hands of our ancestors in order to survive, whether it be tools for hunting or to build a shelter (Elbrecht et al. 22). Tools enable people to do things that may be dif ficult or even impossible to complete. A common way that we look at tools is as stated in the Merriam-Webster definition, which is “a device or implement, especially one held in the hand, used to carry out a particular function(“Tool”).” It is important to note that within this project a “tool” does not necessarily have to be a physical hand held device, it can be something tangible or intangible that can aid in something. A tool can also be something more imaginative.

Tool:

Narrative and Story:

Throughout this project the words “narrative” and “story” are used, as they are essential to being able to communicate one’s total pain. In technical terms, narrative and story have slightly different mean ings, but they are often used interchangeably because one can’t exist without the other. The narrative is “the way you tell the story.” When sharing a narrative, a person has the choice of which events to share and in what order, therefore it is the way a person perceives the story (“Storytelling”).

In The Narrative Playbook: The Strategic Use of Story to Improve Care, Healing, and Health the authors state, “to us, the natural act of nar rative is a universal tool that enables us to discover and reveal stories that might otherwise be lost, invisible, or dormant. Through stories, we can reveal our conscious attitudes, thoughts, emotions, wishes, or aspirations, as well as discover our unconscious motivations, values, intuitions, beliefs, and fears (The Narrative Playbook 12).”

The power of narrative is that it “turns story into information,” which becomes knowledge for the sender and receiver (see fig. 6).

Fig. 1 Narrative allows people to grasp their story and share it in the way that they experienced it.

Create the Foundation

In Create the Foundation, I will be defining chronic pain and outlin ing the need for narrative in pain communication. It also includes a reflection on the role of senders and receivers and the importance of tools within the context of this project.

What is pain?

When attempting to answer this question, it is difficult to provide a clear definition. The first attempt to codify pain was made by the International Association for the Study of Pain (IASP) in 1979 as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.” However, pain is “dwelling within mystery,” because it has many complex layers that one sentence can’t capture (Morris ch. 1). Pain is a paradox, because what pain is for one person, will not be the same for the next. There are also many different physiological “types” of pain described within medicine, for example “somatic pain, visceral pain, and neuropathic pain (Oliveira 227).” The subjectivity of pain and the many different forms it can take, internally and externally of the body, contribute to making it a “mystery” that is difficult to grasp.

In a workshop organized as part of the Co-Pain Lab, I had the opportunity to gather research and to test different communication techniques. I asked everyone to mould their pain in clay (see fig. 2). In this exercise, one can see a representation of how pain is experi enced and expressed differently by each person.

Fig. 2 Pain sculptures from the Co-Pain Lab.

Photo: Alterskjær, Irene. 2020.

Chronic Pain has a Story

One aspect that is important, and clearer to define, is the difference between acute pain and chronic pain, as my project is focusing on the experiences of those who live with chronic pain. Acute pain is pain that exists for a short period of time, while chronic pain lasts longer than three months and has many complex layers (Treede et al. 20).

This element of time is extremely important. In the prolific work of Dame Cecilie Saunders, an English nurse and writer who is known for her research into terminal care and pain, she described chronic pain as “not just an event, or a series of events… but rather a situa tion in which the patient is, as it were, held captive (Saunders 15).” One participant interviewed as part of this project, who lives with a chronic disease and is also a therapist, described chronic pain as having a “past, present and future (see fig. 3)” and that “it has many other invisible layers beyond the physical (Adams).”

These complex layers involved in chronic pain is what Cecily Saun ders called “total pain.” Total pain is not just physical, but also in corporates the suffering that takes place in many aspects of one’s life when they have chronic pain, such as emotional, social, cultural and spiritual suffering, just to name a few. Saunders argues that in order for this total pain to be communicated it requires a narrative to be shared between the sender and receiver (Clark).

The need for narrative in communication about pain was first brought to light by the people who participated in interviews and workshops throughout this project. This need has also been echoed in growing research in the field of narrative medicine. In “A Narra tive Approach to Healing Chronic Illness,” Dr. Tom Egnew, writes:

“The individual, anecdotal nature of suffering, suffused with percep tion and meaning, is relayed as a narrative. To understand the suffer er, one must understand the narrative, for it is through story that the patient’s suffering is accessed...(Egnew 24)”.

“Chronic pain can only be understood through sharing your story.”

- Participant, Co-Pain Lab workshop

Fig. 3

Insights collected in the first Co-Pain Lab workshop and interviews. This interactive research tool allowed me to collect insights and for others to reflect upon them. In this photo one of the key insights reads, “pain of past, present and future,” which means that chronic pain involves a story over time. This provided foundational information for this project.

Photo: Alterskjær, Irene. 2019.

Fig. 4 Sender and receivers of pain communication

In the field of communication the term sender is “the originator of a message on a particular occasion; receivers are their audience on this occasion (“sender/receiver”).” In synchronous interpersonal conver sations these roles often are interchangeable, and people can shift between the sender and receiver. In the circumstances of communi cating pain, the person in pain is often relied upon to be the primary sender (see fig. 4).

The receivers whom the sender communicates their pain to varies from person to person. Some mostly communicate with people outside medicine, while others only communicate pain to people inside medicine.

Starting Inside Medicine

This project hopes to provide a tool kit that can be used by receivers both inside and outside of medicine, but the focus of this thesis will begin inside the world of Western Medicine. Through listening to the experiences that were shared in interviews, it revealed that commu nication with medical professionals is the source of most frustrations. This is the realm where the tools used to communicate pain were first developed and where a narrative approach is not widely accepted (Egnew).

The Importance of Tools

In science it is the “tools and techniques used in experiments that have a direct influence on the results” and therefore play an import ant role in the way we understand the world (Thomas Kuhn). This means that the tools we use have the ability to change and improve the way people understand things. I see that this could have the same influence on pain (see fig. 5). Through designing new tools and techniques that focus on storytelling and provide a more preferable communication experience could it possibly start to lead to a better understanding of chronic pain? With providing improved results could it lead to a shift in the way pain is communicated and treated?

Fig. 5 Re-imagining tools that allow for total pain to be communicated can lead to new outcomes and a greater understanding of one’s pain.

Understand the Past and Present

In order to re-imagine tools and techniques that allow the complexi ties of pain to be communicated, I first seek to understand how pain perspectives and approaches to communication have changed over time. With this knowledge, I will provide a critique on the current tools used and the consequences that have emerged from using them. This step of the design process is then summarized by taking a step outside of medicine and looking to the hope that art can provide in communication.

Changing Perspectives of Pain: Outside Medicine to Inside Medicine

Throughout history there have been many different points of views on pain. In David B. Morris’ Culture of Pain, he reflects on medi cal and non-medical, such as cultural, philosophical and religious perspectives of pain. He highlights that the main component that dictates these varying ideas of pain is culture (Morris ch. 1). Pain can be viewed as something to be embraced in some cultures, whereas in others it is feared. This perspective also determines how someone may communicate or express their pain (Givler et al 2020).

Historically in the Western world, Christianity was the primary belief system, placing pain as part of the human condition. Pain was not seen as something “negative,” rather it was to be embraced as a part of life and something that brought you closer to God (Neilson 8). An important aspect to consider here is that many early perspec tives on pain did not separate body from mind. They saw that emo tional suffering and physical pain were all encompassing. Whether one shared these religious beliefs or not, the dominant view of pain was still one of which saw it as a part of life and the context of plac ing pain within the word “medical” did not exist.

Over time in the Western world, pain was progressively medicalized. Research into physiology in the 18th and 19th centuries started to demystify pain, making it more accessible to medical interventions. Along with research into physiology, the increased medicalization of pain also coincided with the discovery of different pain medications and anesthetics (Sussex). Shifting pain to be viewed as something part of life, to something that could be treated and possibly even numbed.

Morris argues, “Western, industrial, technocratic world- has suc ceeded in persuading us that pain is simply and entirely a medical problem. When we think about pain, we almost instantly conjure up a scene that includes doctors, drugs, ointments, surgery, hospital, laboratories, and insurance forms (Morris ch. 1).”

As pain became medicalized, it started to be viewed through a biomedical lens, meaning pain began to be understood as purely a physiological and biological experience, separating body from mind and not taking into consideration the complexity and the human suffering.

During this time, 19th century researchers, such as Charles Bell, a prominent surgeon and neurologist, began to define pain as some thing that could be localized to one physical area of the body and limited the definition of pain to nerve signals (Neilson 5). This was similar to the perspective of Descartes, which dates back 17th centu ry (see fig. 7), but it wasn’t until pain became medicalized that these ways of seeing became widely accepted.

Although these insights were and are important to understanding aspects of pain, they do not offer a complete picture of how pain really impacts people. The idea that pain involved a unique narrative to each person, with complex layers, was not the accepted way of understanding pain.

Fig. 7 An early approach that defined pain as sending signals from the site of pain to the brain. An illustration by Descartes to show fire ‘pulling’ a thread. Original illustration appeared in Descartes’ Treatise of Man in 1664 (“History of Pain”).

Changing Approaches to Pain Communication

As the perspectives of pain shifted from something outside of medi cal realm to inside the medical realm, one can see that there began to be the development of tools and techniques to try and communicate pain between physician and patient. These tools and techniques were built upon a biomedical view of pain starting in the 19th century, and they are still the tools that are commonly used to this day to communicate pain.

In Joanna Bourke’s, a historian and academic, lecture called “History of Pain Communication,” she discusses the creation and evolution of the visual representations and tools used to communicate pain used in mainstream western medicine from the early 19th century to present day. These representations of pain were used to teach stu dents and physicians about pain in medical textbooks, which includ ed images of men in agony (see fig. 8). The aim was to encourage doctors to look, listen, feel, and smell pain. There was a reliance on the senses. Physicians thought that focusing primarily on the senses was more reliable than verbal descriptions or any other form of com munication. This served as a valuable tool for when trying to observe pain when performing surgeries without anesthetics. Bourke states that physicians were seen as “men of feeling” as they took more time to observe the patient and their pain.

Over time, Bourke states that there was a shift from “men of feel ing” to “men of science” in the late 19th century (see fig. 9). This shift correlates with the changing perspectives of pain and increased medicalization, as shared previously. As research and definitions of pain began to define pain as something that could be understood as a purely a biological experience, it took out the emotional, cul tural, spiritual impacts that pain can have in one’s life. People’s faces and emotions were no longer considered, and the focus shifted to the specific “site” of the pain. It led to the beginning of pain maps and use of geographical metaphors like pain “travelled” through the nerves (see fig. 10). These tools and techniques became the bedrock for communicating pain. During this time anesthetics and pain medications were also becoming more popular, enabling pain to be numbed. In the words of Bourke, people with chronic pain have been “haunted by the invisibility of their own suffering (Bourke 03:00-34:00).”

“Haunted by the invisibility of their own suffering.”

- Joanna Bourke, “The History of Pain”

“MEN OF FEELING”

Dr. Rene Leriche, prominent surgeon and specialist in pain, believed that pain was communicated through facial expressions and gestures. Through gestures of faces he believed that it helped make pain more “tangible.” These expressions were printed in medical textbooks (Bourke).

1800 1850

Fig. 8 Fig. 9

1900

“MEN OF SCIENCE”

Dr Charles Bell, a prominent neuro physiologist, established the “specificity theory,’ which defined pain as being something that can be localized to a specific part of the body (Neilson 5). Lines were drawn onto the human body to illustrate these “sites of pain” (Bourke).

Fig. 10

PAIN “MAPS”

Geographical cation. Pain brain and the source

2000

MEASURING PAIN

Pain maps and scales are still the primary tool for communication (Jacques). Pain scales, along with new technological innovations, try to quantify pain. Measurement tools that combine faces, numbers and adjectives are commonly used (“Wong-Baker”).

Geographical metaphors dominate pain communi Pain is said to “travel” to pain centers in the and doctors use pain maps to try to understand source of pain (Bourke).

1950

MCGILL PAIN QUESTIONNAIRE

In 1971 this questionnaire was created by Melzack and Torgerson. According to the European Medicines Agency, this is the most commonly used self-report ing tool to measure chronic pain (“McGill Pain Ques tionnaire”), which uses a body map and an extensive list of adjectives and metaphors to communicate pain.

Fig. 12

“MAPS”

Currents Approaches to Pain Communication

As shown in the pain communication timeline, the approaches that are being used today are very similar both visually and functionally to the pain communication tools that were first created in the ear ly 20th century. However, nowadays you will see many pain scales and maps that have slightly different variations. For example, many still rely on shading in different areas on a body, such as the McGill Pain Questionnaire (see fig. 11), whereas others are quantitative, and have you rank your pain from 1 to 10 (see fig. 12). And some new versions combine faces with a colour gradient (see fig. 13). These are just a few of the many variations that currently exist.

In recent years, with the increase in opioid use among people with chronic pain, there have been new tools designed to quantify pain and improve the way it is communicated. Through quantifying pain, it is believed that it could lead medical professionals to knowing when someone’s pain should be treated with opioids. One of the most recent tools created is called the AlgometRX (see fig. 14), and is stated to be the “first-of-its-kind handheld device that measures a patient’s pupillary response and, using proprietary algorithms, pro vides a diagnostic measurement of pain intensity, pain type...”.

It is a tool that aims to objectively measure pain through scanning a person’s pupils and seeing how they respond to certain stimuli. The developer of this tool, Dr. Finkel, states that “pain is very complex and it is currently the only vital sign that is not objectively measured (“Breakthrough device objectively measures pain type”).” It was ini tially designed for children, but they see it as a tool that can be used among people of all ages.

Fig. 14

Fig. 13 Rather than numbers, colour is used as a measurement (“Colour Analog Scale”).

AlgometRX scans the pupil for a pain reading (Ceneta).

An Important Consideration

When these pain communication tools are used for certain purposes, and not as the primary tool to communicate and understand chronic pain, they serve an important purpose. For example, in Norway Dr. A. Ellen Jaatun collaborated with different medical professionals to improve the design and functionality of a digital map for cancer pain patients (see fig. 15). I had the opportunity to speak with Dr. Jaatun to learn about the importance of this map, which is used to help treat pain for cancer patients and give insights into disease progression and treatment (Jaatun).

However, many of these tools are being used beyond what they may have been initially been designed for. For example, healthcare mod els that were initially designed for acute pain communication and treatment are also being used for people with chronic pain (Gjesdal et al. 523).

Fig. 15 Illustrations to show how the digital pain map for advanced cancer would be used (Jaatun, fig. 16, p 72).

A Critique on Current Tools Reflection on Language

The design of the tools used to communicate pain reflect the ideolo gies of the time that they were created. This means that the language, signs and symbols used in these tools, reflect what researchers and medical professionals believed pain was when they were first created in the 19th and 20th centuries. In Discursive Design, the authors state:

“Designed objects are never semantically sterile or ideolog ically inert; they are always inscribed intentionally or un intentionally- with meaning and values of the cultures that produced them and the culture in which they eventually exist or are consumed (Tharp et al. 549)”

The perspectives of pain and communication tools developed during this time did not allow openings for personal narratives, rather they saw pain as a biological experience and reduced communication of pain to simplified metaphors and numbers from 1 to 10. Therefore, the use of these tools only reinforces these ideologies. Through the nature of “progress,” as stated by Shane Neilson in “Pain as a Meta phor,” it oversimplifies something that is very complex (5-6).

I believe that providing this language of metaphors is an important tool to prompt a conversation around something that is intangi ble like pain, however, metaphors are often used as descriptors for chronic pain and only focus on the physical aspects. Metaphors can work as a starting point to help discuss a person’s pain in more detail between the sender and receiver, however I believe that they should not be used as a tool to define one’s pain.

The new technological “breakthrough” tool, called the AlgometRX, in my opinion, is also concerning for the future of pain communi cation, as this tool only communicates physical pain and does not communicate the greater complexities and needs of an individual. It also tries to objectify something with numbers that will always remain subjective.

Reflection on Semiotics, Aesthetics and Design

The communication of pain is also restricted to the symbol of a body on most maps. But what about pain that is even more invisible, like the social cultural, spiritual affects that pain has on one’s life? These are aspects that affect the overall health of someone, but they are not something that can easily be communicated through the current symbols used. There are no options to express total pain.

Whether it be the design of a pain map or scale, there seems to be little consideration made to the aesthetics of the design and the experience one has when using them. When looking to the way people respond emotionally to these tools, aesthetics can play an important role. And the way that a tool functions can also affect people on a visceral level (“Emotional Design”). For example, the AlgometRX functions by holding a phone in front of someone’s face, which then scans their eye. And, most maps and scales are handed to someone on a clipboard and they are asked to fill them out in the waiting room. These approaches can make one feel uncomfortable and alienated.

These are important considerations that need to be addressed when re-imaging tools to improve pain communication. From this reflec tion, it led to the following questions: How could the language, symbols, aesthetics, and overall experience be re-designed to allow for more insights into one’s total pain? And how can this experience be designed so that the person feels comfortable doing so?

The Consequences

One of the biggest signals that has shown that there is a problem in the way pain is communicated, understood and treated is the opioid crises that is affecting countries across the globe. With many aspects of one’s pain remaining invisible through the current methods of pain communication, it limits the approaches that can be taken to help people. This contributes to the over prescription of opioids.

In “The Effectiveness and Risks of Long-Term Opioid Therapy for Chronic Pain,” the authors state:

“Prescription for opioid medications for chronic pain has increased dramatically and is associated with increased opioid overdose, abuse and other harm...(Chou et al.).”

In a published interview on the opioid epidemic, Dr. Jeanmarie Perrone states that pain scales are being used as “vital signs,” leading to medical professionals “treating” pain with opioids sooner than they should. She adds, “You know, vital signs are blood pressure, heart rate, respiratory rate, and temperature. And pain scores, are subjective. Whereas vital signs are objective (Perrone).” In pain clinics and hospitals scales and maps are still the leading tools used to communicate pain.

The topic of opioids was brought up in five of the ten interviews I conducted with people who live with chronic pain, as each person had some form of pain medication offered to them, and in some cases strongly encouraged. Many shared that the idea of taking opioids is not an option, but for others their pain was not believed and understood for so long that it has left them at a point where they choose to take opioids in order to get through the day1

In a workshop I attended to help develop this project and challenge me to see things in new ways2, I created the Paradox of the Poppy (see figures 16 and 17). It is a discursive artifact designed to engage people in a conversation about opioids, as it is a very polarizing topic and people have different perspectives of “the poppy.”

One of the questions I asked was: “What if the same amount of time and resources that are used to extract opium out of poppies is used to understand one’s story and experiences of pain?”

1 These insights were gathered in personal interviews with participants that would like to remain anonymous.

2 van den Hooven, Amy. Paradox of the Poppy. 2019, University of Bergen Faculty of Fine Art, Music and Design, Norway. Made in course: MAD-303/Blow Up, Professor Toni Quinn. Sept. 2019.

Fig. 16 Fig. 17

Designing artifacts to create a dialogue about the polarizing topic of opioids. Reflecting on the role of opioids in chronic pain care.

Photos: Alterskjær, Irene. 2019.

Loss of Hope

Different consequences for each person

By limiting the communication of pain to biology it not only limits the approaches that can be taken to help someone, it can also lead one feeling hopeless when they are not able to communicate the complexities of their pain. In “Living with chronic pain: Patients’ experiences with healthcare services in Norway,” the authors write:

“When interactions with healthcare professionals made the partici pants feel insignificant, they found it difficult to express their needs, which seemed to reinforce practical difficulties and unfulfilled expectations and make them lose hope in their recovery. This implies the importance of a holistic understanding of and support for more person-centred practice to accommodate patients’ expectations and expressed needs (Gjesdal et al. 517).”

Just being heard and having the opportunity to open up about one’s pain can have an incredible impact on helping one feel more hopeful and supported.

Along with these consequences, there are also many other conse quences when pain is not communicated adequately between sender and receiver that are unique to each person. There are also personal dynamics, like feeling like one is not believed because of their age or cultural differences, that can lead to a negative communication experience and one’s pain not being received. These are experiences and consequences that will be shared in The Lab section of this the sis, which puts the stories of people who live with chronic pain at the center of this design process.

- Participant, “Living with chronic pain: Patients’ experiences with healthcare services in

“This terrible feeling of not being believed in and not being listened to. The only thing I have asked for is help so that I can take care of myself.”

Norway”

Outside Medicine: Hope in Art

When looking at tools and techniques that people have used out side of medicine to help communicate and articulate their pain throughout history, it is evident that one of the most prominent tools is through art. Some of the most well-known expressions of pain were shown in paintings by Edvard Munch and Frida Kahlo. Munch expressed his agony and inability to let his pain out in The Scream, one of his most prolific paintings (Jaatun 13). Frida Kahlo expressed both her physical and emotional pain, which she was debilitated by after a car accident (Maranzani). Art is a powerful tool to allow one to communicate and express the complexities of their pain.

An artist that I have looked to with a lot of inspiration in this proj ect is Matisse. It was in Matisse’s later work after he became ill and bedridden that some of his most experimental, vibrant and prolific art was created. He expressed his pain and thoughts on life through his paper cutouts, creating his own language of pain and hope (Biog raphy). Because he was bedridden he would cut out various shapes, many inspired by nature, and they would surround his bed in what he called his “garden” (see fig. 18). His nurse would then help him arrange the shapes on the canvas (MIKOS Arts).

When comparing these artistic approaches to communicating pain to the approaches within medicine, it is evident that there is a great contrast. The world of medicine functions through science and a desire to quantify, a very different mode compared to the expres siveness and freedom of art. The hope that I see in art is that it puts the ability to communicate into the hands of the sender and allows one to develop their own visual and tactile expression of pain. It can also allow for a more playful and interactive experience (see fig. 19). These insights from art will be further reflected upon in The Lab phase of this thesis.

A critique of art is that it takes more interpretation because it is an expression of pain and does not provide a clear and univer sal language (Jaatun 13). Another important consideration is that many people may not be comfortable or able to express themselves through art.

I reflect on these historical ways of communication both inside and outside of the medical realm, and it makes me wonder what I can learn from these two worlds to improve the way pain is commu nicated and understood. Could aspects of art be embraced in the design of a more preferable approach to pain communication?

Fig. 18

Creating the “garden” of cut-outs in his Nice hotel room in 1952 (MOMA).

Fig. 19 Matisse turning his apartment into what he called a “factory” where he experimented with different ideas on his walls (“Creating Masterpieces”).

The Lab

In recent years there has been movement towards a less “top-down” approach to design and one that is more humble and collaborative (Slavin). One of the objectives of this project is the creation of the Co-Pain Lab, which is a collaborative lab that aims to open up the conversation of pain and gather stories about people’s experiences communicating pain, both senders and receivers. This lab defines a large part of the design process, working collectively with people inside and outside of medicine to address issues in pain communi cation through interviews and workshops.

The first step of the lab is looking at different speculative scenari os of what pain communication could look like. In the following steps, I gather key insights and reflect upon them to guide the di rection that will be taken in the design of a tool kit to improve pain communication.

The Lab includes six steps: Speculate Futures, Open Voices, Find Connections, Define Themes, Ideate & Test and Refine & Pro duce.

Speculate Futures

When looking at what the future of pain communication could look like and how it could be improved, an important step to take is a speculative design approach, one of the many branches includ ed within the discursive design methodology. As Dunne and Raby note in their book Speculative Everything: Design, Fiction and So cial Dreaming, speculative design is not about trying to predict the future, it is about opening up all sorts of possibilities for the future of complex societal issues that can be discussed (Dunne and Raby 6). The imagining of different futures sits within different realms of the “cone” proposed by Dunne and Raby, which include realms of imagining probable, plausible, possible and preferable futures. This cone has been interpreted and explored by many different disciplines that are seeking change through design (see fig. 1).

In the speculative design methodology the importance of identify ing “signals” of emerging trends is key in imagining what the future might look like. Within the case of pain communication, the “signals” that stand out loud and clear is the increasing number of people living with chronic pain and the increasing number of people becoming addicted to opioids (Chou et al.). The emerging pain communication technologies, highlighted earlier in the initial research, are also alarming, as they are not focused on the complexi ties of pain beyond biology.

Along with these severe “signals,” the increasing number of people feeling discouraged from the systematized and “objective” approach es of pain communication offered within medicine is apparent in my interviews and desk research. There is a rise in people reaching out to online platforms to try and communicate their pain, as they are not able to find the help they need when reaching out to medical professionals and people in their own inner circles (Co-Pain Lab workshop 2020).

In this next section, I am going to examine a probable future if no changes are made to the way we communicate pain, a possible future scenario where people are more open about pain and the complexi ties are communicated, and then I will focus on designing a “prefera ble” approach to total pain communication.

Fig. 1 The “Futures Cone” (Candy, fig. 1.3, p 35).

A Probable Scenario of 2050: Closed Pain

medicalized, systematized, quanti fied, scientific, isolated

What is a probable scenario if no changes are made to the way pain is communicated?

People will suffer in their pain silently. The weight of pain is unbear able and isolating (see fig. 2).

Opioid epidemic continues to grow in the Western World. Techno logical innovations and Artificial Intelligence are able to read pain. These measurements are focused on the biological aspects of pain and are said to quantify pain. Scientists say that these breakthroughs will lead to better treatments.

Even with innovations, healthcare services are overburdened with people in pain and can’t manage the patient overload. Conversations about pain still primarily reside only within the medical realm and creating a connection between the sender and receiver is not import ant. People communicate their pain to technological innovations, not humans. Pain is not something talked about easily or openly.

Fig. 2 Two people are isolated and trapped by the weight of their pain.

A Possible Scenario of 2050: Open Pain

Collaborative, person to person, complexity communicated and received, collective approach to helping people

Now looking on the opposite end of the spectrum, I want to take a look at a “what if” scenario?

What if people are able to openly talk about pain? Each pain is unique and the complexity and totality of pain is communicated. Pain is accepted as having biological, emotional and social layers, just to name a few. Pain is not taboo or scary to talk about. Tools and techniques are not needed because just through conversation and storytelling people are able to offer an opening into understanding their pain.

People are released from isolation and the heaviness of pain, because receivers, such as doctors and loved ones, are able to understand people’s pain and senders of pain feel heard. People collaboratively work together to help people get the help they need (see fig. 3).

Pain is also no longer discussed only in the realm of medicine and healthcare services are not overburdened with people suffering from chronic pain. Pain is discussed more collectively among different people, as the affects of pain go beyond just the realm of medicine.

Fig. 3 Pain is easily communicated and people come together to collectively address people’s pain.

Discussion on Probable and Possible Scenarios

Through talking with participants in interviews and the first Co-Pain Lab workshop, I was able to gain insight into how people felt about these two scenarios that I illustrated.

The “Probable Scenario” really resonated with all of the participants. One participant responded, “I feel like just a number in the system (see fig. 4).” She continued by sharing how much she feels the heaviness of her pain. The mainstream tools and techniques that are being used in medicine are contributing to people living in the “shadow” of their pain, as articulated by another participant.

When discussing the “Possible Scenario”, where pain is viewed in a more positive, open and collaborative way, participants also had insightful feedback. One participant shared how her best experience with communication and trying to find ways to help her pain was when she sat down with multiple medical professionals. However, she stated “you only get this treatment when your condition is already too advanced.”

This discussion also brought up negative implications that could come with pain being very openly communicated. It was evident that this openness would make participants feel very uncomfortable.

To explore this idea of making pain open to anyone, I designed a speculative and imaginative tool that would allow for the totality of one’s pain to be communicated without words. This tool is called the Senses Mask and it enables a person to see, touch and hear someone else’s pain (see fig. 5). The Senses Mask was a discursive artifact used to create an important conversation about how open people want to be in sharing their pain.

The overall feedback was that with too much openness it can cause people to feel too vulnerable. One participant stated, “I don’t want to be seen as my pain.” People also shared that there is a possibility that they could be taken advantage of or manipulated if they don’t have control over who knows about their pain (Co-Pain Lab Workshop 2020).

Reflecting on these conversations, led me to see that an important aspect of this project must be about empowering people in pain and providing them with tools that can give them the choice of who and about what they want to communicate. To give people control over their own narrative.

Fig. 4 Patients move down the conveyor belt in the “efficient health machine.”

Fig. 5 The Senses Mask allows one to see other people’s pains.

Photo: Alterskjær, Irene. 2019.

A Preferable Scenario

When looking at these two scenarios is it possible to design a “preferable” future, as termed by Dunne and Raby, to pain commu nication. One that can offer a tool kit that will shift the way we communicate and understand pain? A shift towards more insight into each person’s total pain. And a shift that can start an important conversation about pain more broadly.

In Speculative Everything, Dunne and Raby discuss how the idea of preferable is not “straightforward (4).” What does preferable mean? And who decides? Currently, the way we communicate pain is dominated by decisions and perspectives within the fields of medicine and science.

In order to seek out a preferable future to pain communication, people in pain must be at the center of the conversation (see fig. 6). The next phase of the design process is about opening up these voices to help envision what a preferable future could look like for pain communication.

Fig. 6 Gaining insights from people who have chronic pain at the first Co-Pain Lab workshop held in Bergen (Co-Pain Lab workshop 2020).

The Co-Pain Lab is a place that gives a voice to people in pain. This project has not yet delved into the personal experiences and barriers that hinder people from being able to communicate their pain.

Proposing a shift towards a narrative and total pain approach to communication can’t occur if the many barriers that are involved in pain communication are not addressed. This step in the process provides insight into both the personal and systemic issues in pain communication.

These voices are vital in defining what a preferable approach to total pain communication could look like.

The interviews involved ten people, who I also consulted with numerous times between 2019 to 2021 to gain their feedback on various aspects of the project. Interview participants are from three countries, which are built upon western medicine models, such as the USA, Canada and Norway, and are between the ages of 27 and 72. Eight of the ten participants are female and two are male. It was difficult to recruit males to talk about their pain, which is an insight that is important to address.

I gained insights into their experiences trying to communicate their pain and the consequences of their pain not being received or believed. I left the interviews to be very open ended, as I felt this is a better way to gain a more accurate reflection of their experiences living with chronic pain.

These are overviews of Mike, Thao, Kathy, Vi and Lainee’s interviews, who I was in regular contact with over the two year development of this project1. Some live with chronic pain that is connected to a diagnosed condition, while others live with chronic pain that is undiagnosed.

1 For participants that wanted to remain anonymous I used pseudonyms. All quotes and personal information shared were approved by participants.

Interviews with people who live with chronic pain (senders)

Thao, age 27

Vi, age 65

Thảo talked about her struggle to find help with her pain after visit ing numerous doctors. “You’re too young for anything to be wrong,” she was told. “Can’t you see how much pain I’m in?” she wanted to respond. Assumptions that were made about her condition left her in months of excruciating pain. “I am just a number on their list, they don’t really listen,” Thảo shared with me. After one of her doctor visits she was prescribed pain killers.

Thảo’s pain affects every aspect of her life. She wasn’t able to work anymore or socialize, not only because of the pain, but also because, “anytime someone asked how I was doing I would cry,” she shared. She described how chronic pain is “physical and mental and it is the mental that can over power life.” Her parents were worried. They could see her pain, but didn’t know what to do or how to talk about it with her.

After months of debilitating pain she saw a doctor that diagnosed her with rheumatoid arthritis. She told me how she went to many different medical professionals for help, but so many seemed to have no education on her condition and didn’t know how to handle the pain she was trying to communicate to them. She looked to alterna tive practices where she said her needs were actually addressed and her pain was seen.

After an appointment with a specialist doctor, Vi shared with me her frustrations. “I feel like I am not taken seriously because of my gender and age.” She expressed how her pain is ignored despite the severity of the situation.

A doctor once asked what Vi’s pain was from 1 to 10, so she responded with a number. The doctor’s response was, “you’re not in enough pain to do anything about it.” Vi has lived with chronic pain for most of her life, making her immune to the pain despite its severity. She stated, “people and doctors look at you and think there is nothing wrong with you because they can’t see pain, which influences the approach and attitude about treatment.”

The affect of pain on her life involves many layers. She stated, “the trauma of pain is a wide spectrum from physical, mental, emotional and financial... depression is a constant battle. It seems a person goes around in circles but never getting to an end.”

With not being taken seriously, the break in Vi’s shoulder has been left too long that it can’t be fixed. I asked her what she thinks the source of the problem of understanding and communicating one’s pain is. She stated, “it’s not a lack of empathy, it’s a lack of education in pain conditions and in identifying the impact it has on a patient overall.”

Kathy, age 42

Mike, age 72

We sat in Kathy’s favorite cafe, where she told me about her experi ence trying to navigate and communicate her pain. She has been unable to work or follow her passions because the pain has taken over. Kathy shared how she does not feel believed by her doctor and even people closest to her. She is living with chronic stomach pain, but she also reflected on her emotional pain due to trauma from her childhood. She doesn’t bring up the trauma with her doctor otherwise “they will think my physical pain is psychosomatic.”

Kathy also reflected on the communication struggle with her family. “My mom only sees my pain, she doesn’t see me,” she shared. This brought up the question of “how can one communicate their pain, but still be seen as a person and not their pain?”

After meeting Mike, both a therapist and someone who has lived with chronic pain for over 30 years, while touring the Edvard Grieg museum in fall 2019, I have had the opportunity to hear his story and learn a lot about pain and communication.

As a patient at the UC San Diego Pain Clinic, one of the leading pain clinics in the USA, his experiences are eye-opening. Mike described a time that his doctor sat beside him and looked him in the eye and told him that “we” are going to get through this. He shared how this support, connection and acknowledgment was really important to his well-being.

Even though he is grateful to have supportive doctors, Mike shared how difficult it can be to communicate the real-life impact of his pain with his doctors. Even at a leading clinic, patients are still handed pain scales to communicate their pain. Mike has learned to live with the pain so there is no number that can truly reflect his level of pain. He told me how he circles multiple numbers on the scale, because there is “no way to quantify it accurately.”

Lainee, age 34

Lainee shared how it’s hard to communicate her pain when she doesn’t even fully understand it herself. I don’t have the words to be able to describe something so confusing. She told me that the per son she feels the most comfortable talking about her pain with is her closest friend. Along with the difficulty in communicating her pain to her doctor, Lainee shared how difficult it was to tell her employer that she was needing some time off because of the pain that she was experiencing. She asked me, “How do you even begin to approach a conversation like this? I don’t even know if they will believe me.” Most people rely on medical notes from their doctor, but if you aren’t able to articulate your pain to your doctor then you suffer even more. “I need more of a voice or an advocate to help me.”

What are your needs?

Along with talking about their experiences trying to communicate their pain and find help, I also learned a lot about their stories and how pain has influenced many aspects of their lives. When I asked them what their needs are to help them heal, the impact of the pain on their lives became extremely evident. I started to think that if these needs could be communicated and how their pain affects their ability to reach these needs, such as their ability to work, socialize with friends and have intimate relationships, just to name a few, I believe that their pain and suffering could be communicated much more successfully.

Making the way pain impacts their lives visible not only helps com municate their pain, it also brings insight into more ways beyond medicine that need to be addressed to help someone.

In this reflection, there are comments taken from both the inter views and the first Co-Pain Lab workshop. All comments that are shared are barriers that more than one participant spoke about. Along with barriers, I have highlighted the positive experiences. From these insights, I defined what factors could lead to a more preferable way of communicating one’s pain.

Key insights are categorized into three categories: Preferable Ways to Pain Communication, Barriers to Communicating Pain and Positive Experiences to Communicating Pain.

Preferable Ways to Communication

The complexity of one’s pain to be com municated beyond biology. “I want my story to be known.”

More connection and interaction between the sender and re ceiver. A co-creative approach to commu nication.

A more collaborative approach to finding ways to help some one amidst their pain. More attention to one’s needs.

For my pain to be visible to the doctor and to be believed without assumptions made

To not be seen as just my pain, but as a whole person.

To have enough time.

To have more control over how my narra tive is told and who it is shared with.

For more empa thy and education around pain with those who I am com municating to.

Communicating both pain and needs more clearly.

Barriers to Communicating Pain (senders)

“I have pain, but I also have hope and I can’t communicate either of them.”

“I don’t have the words to explain my pain.”

“I don’t want to be seen as my pain.”

“I am in too much pain to talk about it.”

“I’m fearful that I will get judged or not be believed if I talk about my pain.”

“Pain is always changing, making it difficult to describe.”

“I have seen many doctors and they seem to have a lack of education about chronic pain.”

“I feel a lack of empa thy when I do open up about my pain.”

“There is never enough time to com municate my pain to my doctor.”

“I don’t understand my own pain so how am I supposed to communicate it?”

“When my doctor asks how I am, it is hard to be able to ex plain everything over the last few months.”

“It’s invisible and so difficult to grasp.”

“Assumptions are made about my pain and what treatments are best for me.”

“Because of cultural differences, I feel like I can’t express my pain and that it is not understood.”

“I’ve given up on try ing to communicate my pain, because my doctor and loved ones don’t get it.”

Positive Experiences to Communicating Pain (senders)

“The nurse sat down beside me before the doctor and took my story. She then shared it with the doctor. I felt more heard.”

“My doctor sat be side me and looked me in the eye and said “we” will get though this.”

“My dad was just with me to hold me in my pain, I didn’t want to speak.”

“I can only talk about my pain with the few people I trust.”

“I’ve gone to alter native practitioners because they help me communicate my pain and address my needs.”

Testing an art technique inspired by insights:

From analyzing the many insights that were provided from the interviews with people who live with chronic pain, it shed light on many systemic issues, like lack of education, lack of empathy and not having enough time in the medical realm. And other barriers, like fear of opening up and cultural differences that inhibit communica tion and understanding pain.

When hearing about these experiences and what approaches would be more positive and preferable, many spoke about the need for more connection and collaboration in the process of communication in order to feel heard and hopeful.

Co-creative Collages:

This led me to experiment with a co-creative storytelling technique, inspired by Matisse’s cut-out method, with a hope that it would give more insights into people’s total pain and needs.

Over the phone, I asked five participants to sketch their needs and their pain (see figures 7-11). Along with their sketches, I created visuals based off of my interpretations of their stories. There was no time limit on our conversation, which led to many insightful ex changes.

After they sent me their sketches, I combined them with my visuals to co-create an illustrative collage, mixing literal and abstract images. These collages started to put their narratives into something more visual. The black colours are representative of the feelings and expe riences of living with pain and the brighter colours reflect the needs that help them thrive and feel hopeful (see figures 12-17).

Fig. 9

Fig. 7

Fig. 8

Fig. 10

Fig. 11

Fig. 12

Fig. 13

Fig. 14

Fig. 15 Fig. 16

Fig. 17

The response to testing this technique was really positive. People felt more heard and that the message was received when I was interpret ing their message through visuals, rather than just though words. I was then able to show them the image after and ask if they felt that these images reflect their story and the pain that they experience. It created an opening for more reciprocation and shifting of roles between being the sender and receiver.

In this technique, I also considered time and added new elements to their picture when I spoke to them a year later. This showed just how many aspects are affected in one’s life because of their pain.

In reflection, I also wanted to think realistically about this technique. It was a useful exercise to gain further insight, but would receivers, especially medical professionals, want to invest the time into this type of technique? The answer is likely “no,” but I think there is a lot to be learned that could be brought into a re-imagined tool for communication.

The main critique that I observed was that I felt like I was still shap ing their visual narrative too much. I also felt that the two-dimen sional images were not meeting the need of making one’s pain and story more graspable and tangible. The visuals created were also still very abstract and needed interpretation.

How could the process become more three-dimensional? How could the process be designed to put more control into the hands of the sender, in other words the person in pain, while still making it a co-creative process?

I explored these questions through using clay in the following CoPain Lab workshops.

Co-Pain Lab Workshops

When “discoursing-through-design,” the designer intentionally designs an artifact with an embedded message so that it can act as a tool that communicates, opening up an avenue for further discourse and new ideas around an important issue (Tharp et al. 76). In these group settings, the aim was for me as the designer to take a step back and to allow participants to design their own discursive artifact. Each participant was asked to mould their pain with clay and to use it as a probe to help them communicate their pain (see figures 1824).

While carefully planning these interactive Co-Pain Lab workshops, I considered the following aspects: getting to know the participant and their pain, creating a safe space, and how the making and movement of objects could help tell a story.

The first workshop was with a group of eight people and took place at the Hub, a space for social innovation in Bergen. Where the second workshop was organized in collaboration with a BA student and MA student in Humanities, and took place at KMD in early 2020. There were 50 participants in this collaborative workshop and they were invited from Fagskolen Kristiania. These participants do not live with chronic pain, but it was evident that pain is something that everyone had experienced in some way.

Through both of these workshops, I was able to gain insight into:

1) Ways that people view their pain and how they communicate it.

2) Needs that people have in their life that contribute to their overall health.

3) Art techniques that help people open up about their pain.

Photos from workshop taken by Alterskjær, Irene. 2020.

Fig. 18 Participants reflecting on their pain objects.

Steps for each workshop:

Mould your power and start a group conversation where you can reflect on your strengths.

Place your pain object in the open “white space” in a spot that you feel comfortable.

Trace the object that you picked and start a conversation with the person that made this new object. What made you choose the ob ject? Can you relate to the pain of the person that made it?

Pain

Mould your pain and reflect on it individually or in conversation with someone at your table.

new object made by another participant that you relate to in some way.

From this object write a stream of consciousness about your needs and your pain.

Fig. 19 Participants mould their pain and reflect upon them.

Fig. 20 A gathering of pain objects on display for people to interact with.

Fig. 21 Participants placing their objects in the “white space.”

Fig. 22 Participants walk around the objects and choose a new one that they relate to.

Fig. 23 A participant traces their new object that they have chosen.

Fig. 24 Participants write about what their struggles and their needs are.

Key Insights:

It was amazing to see how using objects, placing them in the “white space” and reflecting upon them could help someone tell their story. By involving the body and the sense of touch, it appeared to help people become more in tune with their emotions and pain, opening up a greater potential for communication.

This research also showed the value of connection between people in the communication process, and how art practices can help facilitate this. Through the use of a handmade probe it helped people feel more safe when talking about their pain. It acted as a focal point and a “bridge” between the sender and receiver.

Having the clay, something visual and tactile, helped people communicate and grasp their pain easier than through just words.

Thinking about their needs was not easy for people to artic ulate in the writing exercise.

People said how the clay object helped them feel more safe when talking about pain as it was some thing to focus on.

People were able to relate to other people’s pain objects, which created more conversation.

Movement of objects and body was a way for people to commu nicate pain beyond words.

Getting to know the participants first and having them think about their strengths and supports was im portant to do before delving into pain.

Receivers of PainInside Medicine

The voices of people who live with chronic pain are at the forefront of this project, however when seeking a collaborative approach towards a preferable future, it was essential to bring in voices from inside medicine (see fig. 25). I interviewed four professionals who are involved with chronic pain inside the medical realm.

The first interview took place with Borrik Schjødt, Clinical Psychol ogist at Haukeland Hospital, who works in a multidisciplinary pain clinic. This was then followed by an interview with Dr. Tom Egnew, a researcher who has written about narrative medicine, a newly established field inside the medical realm. The third interview was with Dr. Stephen Nap, a family physician who talks with people in pain on a daily basis. And the fourth interview was with Ingvald Grindheim, CEO of GRASP, an innovative company that is trying to break into the medical realm to offer a different approach to pain communication

On the following pages, I give an overview of each of these interviews, as there were numerous insights shared in these conversations. I categorized these interviews by the titles, Differing Approaches to Communication, Narrative Medicine vs. Biomedicine, Pain From the Frontlines and “Grasping” Pain.

Fig. 25 Receivers inside medicine that are frequently involved in conversations about pain.

Carol Haigh and Pip Hardy, “Tell Me a Story — a Concep tual Exploration of Storytelling in Healthcare Education”

“Healthcare is becoming increasingly obsessive about evidence-based practice, however the power of storytelling in healthcare education is being explored.”

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Differing Approaches to Pain Communication

An interview with Borrik Schjødt, Clinical Psychologist at Haukeland University Hospital.

Upon arrival to the office Dr. Borrik Schjødt, the head psychologist at Haukeland Pain Clinic, I was comforted by his warm disposition. Soon after telling him a bit about me and what my project is about he asked me “are you in pain today?” I was immediately taken aback. I don’t know if I have ever been asked this question. Yes, I was in pain, but my first reaction was to say I was feeling fine. I only said this because like so many others, I didn’t know how to communicate my pain to him. This reminded me of how such an important ques tion is rarely asked to people in pain. But it also reminded me of how difficult it is to answer this question.

After this interaction, I started the interview. Dr. Schjødt shared with me some of the difficulties that are faced in their multidisciplinary pain clinic when it comes to pain communication. He shared how “doctors don’t like to work with pain because there is so much un known about it.” When it comes to how psychologists approach pain communication he said, “we like to ask questions.” This showed me that within medical professions there are very different approaches to working with and talking about pain.

He expressed how when he speaks with patients he focuses the ses sion on finding ways to “help people function,” rather than talking about the pain because he can see how difficult it is for people.

When we talked about treatment for chronic pain, he spoke about how “opioids are only a temporary fix and that they want to find other solutions to help people”. Dr. Schjødt shared how there is a growing shift in how pain is managed and that “there is more under standing that the body can heal itself, but the conditions have to be right.”

Narrative Medicine vs. Biomedicine

An interview with Dr. Tom Egnew, Behavioral Scientist and Re searcher, University of Washing ton Department of Medicine.

Supported with research from a published article written by Dr. Egnew.

After reading articles about narrative medicine and healing written by Dr. Tom Egnew, a behavioral scientist and researcher from the University of Washington Department of Medicine, I reached out to him for an interview. Dr. Egnew has focused his work and research on how to train students to be “in dialogue” with patients. In “A Nar rative Approach to Healing Chronic Illness,” Dr Egnew states,

“

Narrative medicine is to the management of suffering as biomedicine is to the management of disease (161).”

The concept of narrative medicine was established by Dr. Rita Sharon in the early 2000s. Narrative medicine aims to bring medi cal professionals, therapists, loved ones and others together around education and sharing the importance of bringing narrative into the everyday practice of medicine. It is a collaborative endeavor that aims to “create a clearing” that offers safety and protection where people can come together around one’s story (Charon).

In the interview with Dr. Egnew, I asked “how do you incorporate more narrative into practice?” In his answer he shed light on the sys temic problem of communication in medicine and how it starts with education. He expressed how in narrative medicine the tools they use are “story and empathy” to better understand a person’s suffering and pain. “The problem is,” he stated, “students learn this and then it is forgotten.” I asked why this was the case and he responded, “stu dents get socialized into the world of biomedicine...the training en vironment can also be really intense and there is a lot of pressure for students to find a diagnosis. Through this they lose the art of story and conversation.” He reiterated, “time is one of the biggest factors.”

Near the end of the interview, Dr. Egnew reflected on how interac tions between patient and doctor in medicine used to involve a lot more “ritual.” He explained this by telling me how a doctor would listen and be more connected to the patient through a series of questions and interactions. He followed with, “now it is restricted to questions that are listed on drop-down menus in an electronic medical record...with the computer doctors are robbed of rituals. The connection is taken away.”

Pain From the Frontlines

An interview with Dr. Stephen Nap, Family Physician, ValleyCare Medical Clinic, Canada

I had the opportunity to interview Dr. Stephen Nap, a family doctor who resides on Vancouver Island, Canada. He stated how his expe rience working with pain is from the “frontlines,” as he is often the first person people will see regarding their pain before they may be recommended to a specialist. In this interview, he shared his person al experiences and point of views about communicating and trying to help people in pain.

I asked what the biggest barrier to communication is and he told me it is for the patient to put “thoughts into words” in order to get “a hold of what kind of pain someone has.” Unless it is something visible, Dr. Nap has to rely fully on the description given by the patient, however many times the patient will say, “I don’t know how to describe it.”

Along with the barriers that are experienced for the patient to com municate, there are also struggles for the physician to communicate. Dr. Nap said that he has to be very careful with how he explains what he believes the root of someone’s pain is. For example, he stated that when someone comes in with neuropathic chronic pain, which is when “the brain confuses normal signals for being painful ones,” he doesn’t want to make them think he doesn’t believe them when he says that the pain is rooted in the “brain.” He said, “it’s challenging to navigate,” as he believes that these patients are in pain, “but when you say something is rooted in the brain, they can think you don’t believe them.”

Dr. Nap made a point to say, “patients always want to be heard. Most of my appointments with chronic pain patients are just talking about it and making sure they are heard. Many times I don’t have a solu tion.” Like many others, Dr. Nap also explained that “time” is one of the biggest barriers. He added that there can often be egos at play in medicine, making many doctors not listen to patients and come to assumptions too soon.

When I proposed the idea of a creating a new position inside medicine where this person would be responsible for pain com munication, Dr. Nap’s response was positive. He stated, “a separate session for communication would be very helpful to help people feel heard.” He also added that a position dedicated to communication “could help identify aspects of their pain that aren’t being treated.”

“Grasping” Pain

An interview with Ingvald Grind heim, CEO of GRASP.

When looking for current innovations that are taking a different approach to pain communication, I learned about GRASP. In an interview with Ingvald Grindheim, the CEO of GRASP, which is a company in Bergen that has created a pain communication tool that tries to measure pain in a more tangible way. The tool is tactile and the design of the shape is inspired by a “pebble,” Grindheim told me. A person squeezes it when they are in pain and the device will track how long, how hard and when you squeezed it. This information is then communicated in a graph on GRASP connect, an online man ager (see fig. 26). This graph can then become a visual aid for a more in depth conversation about someone’s day-to-day experience living with pain.

Grindheim stated, “this tool is important in the in-between space when someone is living their day-to-day life in pain.” He also said that it is a way to “provide hope and to encourage more conver sation.” They see that this tool would be a great fit for therapy and psychiatry, but they also hope that it will be used in clinics, for people who have chronic pain. When they were looking for a user group to test the GRASP tool they had so many people with chronic pain reach out. This shows just how much a tool for improved communication is needed.

I also learned about the intense process of testing and analysis they are having to go through to have the tool deemed as evidence-based, which is often needed for medical professionals to adopt a new tool. Convincing medical professionals to put their existing tools to the side and consider new ways is not easy. Grindheim shared how doctors are both “positive and skeptical” about the idea. It became evident that designing tools that offer a new approach to commu nicate and understand pain would not be as easy as just designing a tool and hoping that people adopt it.

Fig. 26 Grasp tool and online manager (Grasp)

Barriers to Communicating Pain (receivers)

It is invisible. “Not enough time. We only have 10-15 minutes per patient.”

Not enough resourc es (tools and money). Pain is subjective, there is no objective tool to measure it.

Questions listed on digital drop down lists are relied upon when asking ques tions about pain.

When I ask patients to describe their pain they say, “I don’t know how to.”

Doctors do not always know how to approach the subject of pain.

“We focus on talking about function and how to help cope, rather than the pain.”

“There is so much about pain that doctors don’t know.”

“If I tell someone their pain is rooted in the brain, they think I don’t believe them.”

Not enough taught in education about pain and how to talk about pain.

Doctors are tired and have a lot of patients to talk with.

Barriers to Making Change

Tools are used and accepted when they are considered evi dence-based.

Existing paradigms within biomedicine make it difficult for a narrative approach to be accepted.

Very few courses and time is spent on pain and communication in doctor training in many medical programs.

There is a lack of time in many health care systems. Many are over burdened and their is a focus on efficiency.

Preferable Ways

Creating a new posi tion just for commu nication inside med icine, putting less of a burden on medical professionals.

To have an objective tool to understand pain. And to be able to make it evidence based.

To have pain com munication and education to be more embedded into education.

A tool to make pain more visible and to help give people a language.

When reflecting on these interviews that took place with receivers of pain communication within the medical realm, it is evident that the barriers shared are very similar to the ones shared by the senders. Some of these shared barriers include not knowing how to start the conversation about pain and not being able to understand something that is invisible. However, from talking with people who have chron ic pain there is a frustration that there should be more done inside medicine to improve pain communication. These insights revealed that there needs to be a tool that can help not just the senders, but also the receivers in the process of pain communication.

Reflecting on the GRASP tool was encouraging to see a new approach to communication that attempts to visualize one’s pain from day-to-day, however the primary goal still seems to measure rather than to access one’s narrative. Learning about this tool also showed how difficult it is for a new tool to be adopted into the medical realm if it is not evidence-based.

The aspects that inhibit change from being able to happen are very systemic and start with education. As noted at the beginning of this thesis, many of the values inside medicine are based in biomedi cal ways of thinking, which work against many of the goals of pain communication that this thesis is striving to improve upon, such as a more co-creative approach where narrative and total pain are at the core of communication.

Dr. Egnew shared that in order for there to be more acceptance around narrative medicine and a new approach to communication, “we may have to change and let go of some of these preconceived ways of seeing.” I believe that creating a new vision for communica tion through speculative design, as this project will aim to do, is the first step toward “shifting ways of thinking.”

Receivers of PainOutside Medicine

When taking a step outside of the medical realm (see fig. 27), and looking at pain communication, it offers very different insights and approaches.

At the beginning of the thesis, I provided a brief overview of how art has been used outside of medicine to express and communicate pain. This process of interviewing people who live with pain, revealed not only the need for narrative, but also for more connection and collaboration in the communication process. Art therapy is a field that provides a lot of important considerations regarding these needs. Within therapy, there are methods and tools that are used to try and help people communicate their narrative and the more complex aspects of what people are struggling with (see fig. 28).

“Art therapists encourage and support clients to experiment with and experience the paints, the pastels, the colour, the plasticine, the clay, the movement and the sensate qualities held within the materials and the experience. This forms the ways of knowing through which the unknown can become known, the unspeakable shared, and life experiences storied. These are the gifts for communication and ex pression (Elbrecht et al. 19).”

Cecilie Meltzer, Professor of Art Education at Oslo Met, has provid ed guidance throughout this project, giving me many insights into art therapy and creative communication techniques. Along with this guidance, I have interviewed two other therapists, Michael Burke and Mandy Reid. These interviews brought up recurring themes re lated to therapy and communicating pain. I then further investigated these themes through reading academic journals.

To best communicate these insights, I categorized them into six main topics. These topics include: A Co-Creative Process, Giving a Voice to the Senders, Symbolism and Movement of Objects, Stuck Narratives, Haptic Communication and Importance of Aesthetics.

Fig. 27 Receivers outside medicine that are frequently involved in conversations about pain.

Fig. 28 During the summer of 2020, I traveled through Norway and visited different artists that collaborate with therapists. At this art space, clay objects have been used to help people get in touch with some of their unspoken pain.

In “The Visible Spectrum: participants’ experiences of the process and impacts of art therapy”, Mimmu Rankanen states how in art therapy there is a three-way dynamic that is created through interac tions that take place between the therapist, artifact and client. These exchanges can be facilitated by the act of making and interacting with artifacts. These objects then work like “vessels,” helping people articulate aspects of their pain that may have otherwise been difficult through words. Through this three-way interaction, it creates a space of “potential” where one can open up and for communication to take place between the sender and receiver (Rankanen 67).

Giving a Voice to the Senders

Creating a dynamic that allows for more reciprocity, also gives the person in pain an opportunity to help shape their own future path of healing or treatment. In a conversation with Cecilie Meltzer, Professor of Art Education at Oslo Met, I learned more about this co-creative process that art therapy is built upon. Meltzer mentioned how “people in pain often hold many answers to what may be able to help them,” so it is important to give them the tools that can help them recognize and communicate these aspects. She stated, “it is about seeing what people are telling you and seeing the possibilities for what is needed (Meltzer).”

Symbolism and Movement of Objects

Using objects that hold symbolic meaning is also a valuable tool to help people communicate. This can be seen in Cecilie Meltzer’s “Life in Noah’s Arc” method, which is an art-based tool she has used to foster communication in group settings and for leadership develop ment. The method is a playful, tactile and an imaginative approach to “explore and experiment with intra and interpersonal patterns of behavior in a symbolic and nonthreatening way (Meltzer 92).”

Through each person’s choice of animal and the way they move and position the figure on the yellow “stage”, it helps to communicate and express inner thoughts and feelings in a non verbal way (see fig. 29) It is a method that allows for reflection and creates an opportunity for further discussion around these dynamics that are otherwise difficult to communicate. It is a method that could easily be translat ed to help facilitate conversations about pain.

Cecilie shared that in developing this method she gained inspiration from psychotherapist Bert Hellinger’s constellation work (82). The goal of constellation work is to uncover pain that is rooted in family dynamics and to find ways to resolution (see fig. 30). These methods show that the use of objects and symbolism, is not only a more imag inative and hopeful approach to communication, it is also proven to be successful.

Fig. 29 Participants place their chosen animal figure on the “stage” and move it through out the workshop (Meltzer, fig. 1, p 88).

Fig. 30 Constellation work is used to help create a visualization of the relationship dynamics in one’s life (“Circle of Friends”).

Stuck Narratives

I have also had the opportunity to gain a lot of guidance from Michael Burke, both a trauma therapist and someone who has lived with chronic pain for many years. He has given me insights into both the role of the sender and receiver in communication. As a trauma therapist, he shared that there can be many similarities to people with trauma to people with chronic pain, as for many who live with chronic pain have experienced trauma because of the suffering that the pain has caused.

Mike explained that when someone experiences something trau matic that their internal narrative can “become stuck,” and it can become very difficult to communicate the complexities of their pain. It is through therapeutic techniques, especially art and play therapy methods, that can allow for these narratives to become “unstuck (Burke).”

One of these techniques is “sandplay” (see fig. 31), which was a method that also inspired Cecilie Melzer’s art based communication method called Life in Noah’s Arc, as mentioned prior. The use of metaphors and objects can help articulate the indescribable, helping these narratives become released.

In art therapy a common theme is also “time”. In order for a narra tive to be communicated, and in some case “unstuck,” participants must have enough time to communicate their story.

Fig. 31 Sandplay is a tool used to embody an experience through image creation in sand, using small symbolic objects to create a three-dimensional image (“Jungian Sandplay Therapy”).

Haptic Communication

Art therapy embraces many techniques that connect to the senses, one in particular that is common and seen in many of the examples shared already, is the sense of touch.

“The use of the hands as a perception tool is called haptic perception. Haptic refers to the sense of touch. Haptic touch is defined as ‘an inherently active and exploratory form of perception involving both coordinated movement and an array of distinct sensory receptors in the skin (Elbrecht et al. 22)”

Tactile communication is the first mode of communication that we learn (23). Research has shown that touch can be a powerful tech nique to help communicate. For example, when a person works with clay it can help them communicate difficult aspects of their pain that words can’t express and it can even connect to aspects of pain that are in the subconscious (see fig. 32) (Finkelstein). In conversation with Cecilie Meltzer, she stated “everyone contains a story, it is just how you access it.” She added that art therapy “lets the hands speak.”

In Nicolette Bodewes’ project from the Design Academy Eindhoven, she used haptic perception in the development of her project called Tools for Therapy (see fig. 33). These are unique objects that she designed with inspiration from various psychological themes and archetypes (Bodewes).

Fig. 32 Participants are given a box with clay inside to help them communicate in therapeutic and pedagogic settings (“Work at the Clayfield”).

Fig. 33 Graspable tools aim to bridge the communication gap during therapy sessions (Bodewes).

Importance of Aesthetics

Another main topic that came up when learning about art therapy and techniques used to communicate pain was aesthetics. Arild Berg is a Professor of artistic development in the field of design, crafts and art at Oslo Met, who has delved into the topic of aesthetics and communication. In an interview with Berg, I was able to learn about his project on a hospital psychiatric ward, where he collabo ratively created a series of tactile ceramic art pieces that were placed throughout the ward to encourage dialogue between patients and medical professionals (see fig. 34). Arild mentioned that it was not designed as a therapy tool, but rather to work as “door-openers” that could help start a dialogue (Berg). People could examine, touch and hold the objects in conversation.

In “The Essential Dialogue: a Norwegian of Art Communication in Mental Health,” the authors reflect on Berg’s work and how these art objects helped “stimulate communication between patients and health professionals.” Even staff members who had never used art as a tool for communication began to value the art objects as “door-openers” to learning about “aspects of the patient that were not previously known.”

The study demonstrated a way of using visual art objects in a hospital setting that was not just an aesthetic decoration, but also as a means to communication (see fig. 35). The use of both “figurative and non figurative art evoked memories, fantasy and conversation between staff member and patients”. The authors note that in health care settings the use of aesthetics should not be underestimated (Ingeberg et al. 27-28).

Fig. 34 Arctic Border, a porcelain art object used to increase the understanding of interpersonal communication dynamics in mental health (Ingeberg et al., fig. 1, p 24).

Fig. 35 Placing art objects in unique areas around the ward created more discussion and reflection (Ingeberg et al., fig. 2, p 25).

Reflection

Reflecting upon these insights gained through interviews and ana lyzing different techniques, has given me a lot of important consid erations for the design of the tool kit within this project. Unlike pain maps and scales, these tools are more interactive and tactile. They also provide an opening for people to talk about the more complex layers of their pain, in a more aesthetically pleasing and comforting manner. These techniques have proven the potential that creative communication has in helping people articulate the complexities of their pain and open up in a more safe, imaginative and collaborative manner.

Aesthetics is also an important topic for consideration. Through my research, I have realized that aesthetics is not something that is commonly discussed or considered when creating tools for pain communication in art therapy. This may be because the message that one communicates through making art may be seen as more important than the aesthetics. Or maybe it is because this is a realm that designers have not often worked in. It also serves the question should pain be represented to be aesthetically pleasing?

Through learning about Arild Berg’s work in the mental ward at a University Hospital in Norway, it is evident that the attention to aesthetics is a very important consideration to helping engage people, creating more openings for communication. It also serves a dual purpose of creating something that can help create a more calming and uplifting atmosphere, while also serving a practical purpose as a tool for communication.

Researching these tools also helped me differentiate the goal of my tool kit compared to tools used in art therapy. The main differentia tion, excluding Arild Berg’s project, is that many of these art therapy tools are focused on the therapeutic benefits of delving into interper sonal relationships and dynamics, whereas I am focusing more on creating a communication tool that can lead to more insights into what can help understand one’s pain and needs. To find new ways of communication beyond the biomedical model that can help find more pathways to help people in pain.

In The Initial Research and The Lab, I gathered hundreds of insights. From theses insights, I narrowed it down to 50 insights that I felt reflected the outcome of the research. It was a difficult process to analyze and narrow down so many important pieces of information. To help with this process, and to try to stay as objective as possible, I gained input from participants involved in the project as well as design colleagues at school.

I first started organizing these insights through sketching quick mind maps (see fig. 36). I then transferred and organized this information onto sticky notes, where they could be easily read and understood by others. These insights, the methods used to discover them and the main themes are shared on the following pages.

Fig. 36 I created quick mind map sketches throughout the design process to help categorize and understand the research.

After the workshop she told me about her pain object. She was emotional in telling me she doesn’t know how to live without the pain. The object was a vessel to communicate this (Co-Pain Lab).

“I don’t understand my own pain (Wade).”

“In medicine the art of conversation has been lost. There used to be ritual...It was more tactile and about the senses (Egnew).”

“There can be many dif ferent types of contain ers that can hold people and help them feel safe when talking about pain, both physical objects and intangible tools (Reid).”

Through observation, it became evident that articulating their needs was not easy. It revealed that people need help articulating their needs just as much as pain (CoPain Lab).

“Not enough time. We only have 10-15 minutes per patient (Nap).”

“Being too open about my pain is not comfortable (Co-Pain Lab).”

“Everyone is always containing a story, it is just how you access it (Meltzer).” In art therapy it “let’s the hands speak.”

Working with tools that work non verbally first can be a “solution to language barriers (Grind heim).”

“It’s hard to talk to a doctor about my pain because they don’t understand my culture (Co-Pain Lab).”

“I feel like just a number... Going through the sys tem when you are in pain makes you lose touch with yourself (Co-pain Lab).”

The colour of the object is an aesthetic choice that can also help communi cate (Tessem)

There is a need for empathy, trust and vul nerability. When people share their stories they are considered “sacred” to some people (Co-Pain Lab).

Questions listed on dig ital drop-down lists are relied upon, rather than listening to someone’s story (Egnew 163).

“I wasn’t educated in autoimmune diseases so I didn’t know what was going on. I went to my doctor and they didn’t do anything. They just gave me pain killers.”

“I’m so dismissed by my gender and age,” the interview participant explained when I asked about her communication experiences in health care.”

I asked if we should talk more about pain to our doctors. “Yes, not talking about it is why people don’t get it.”

“Doctors struggle understanding pain not because of a lack of empathy, it’s a lack of training about pain management and know ing how to identify the impacts of pain.”

The language created needs to be open and continue to be able to be built upon (Co-Pain Lab).

Very few courses in med ical training are about pain and even less about communication (Egnew, Nap).

Communication tools are built off of paradigms of pain that date back to the 18C (Bourke).

Healthcare is becoming increasingly obsessive about evidence-based practice, however the power of storytelling in healthcare education is being explored (Haigh and Hardy 410).

Attention to aesthetics in communication objects is key in getting people interested and curious (Ingeberg et al. 27-28).

“We are not taught about suffering.” Biomedicine is important to treat disease, whereas narra tive medicine treats the suffering (Egnew 163). It looks at the “total pain” (Clark).

“My doctor sat beside me and looked me in the eye and said “we” will get though this (Burke).”

“Nothing is out there trying to visualize pain (Grindheim).”

Pain is invisible and diffi cult to grasp. “Do you see how much pain I am in?” she asked the doctor.

“I’m in too much pain to talk about it.” While an other participant states, “I don’t like to talk about my pain (Co-Pain Lab).”

“Pain morphs into many different pictures (Adams).”

“Traumatic memory vs. narrative memory...the narrative can get stuck because of pain and trau ma (Burke).” Play therapy and other tactile tools can help these narratives release.

Initial impact, usability and meaning are key aspects to consider when designing with the user in mind (“The 3 Levels of Design”).

“working with something that is 3d makes it easier to understand and talk about more dimensions of pain (Burke).”

Having someone walk you through the commu nication experience is key in creating safety and helping people open up. The relationship between the sender and receiver is vital (Tessem).

“When children are born, they are a relational spe cies. Why do we lose this? We gain shame around pain (Murphy).”

Reflecting on interviews and articles in biomedi cine revealed that many researchers are seeking to create tools that quantify pain, whereas a narrative approach is still subjective.

There are so many dif ferent types of pain and “what really matters is culture (Austrheim).”

“There is a lot that I don’t feel comfortable talking about my doctor with. I only talk about my pain to my closest friend (Wade).”

“Anyone can be an inter preter, it doesn’t just have to be a doctor (Egnew).”

“The discursive design process involves not just choosing an appropriate dissemination context but designing new appropriate, and various deployment sites and conditions (Tharp et al.)”

“students learned about the value of narrative in the first year, a little in the second and then it all went away (Egnew).”

Conversing in a place and using objects that help people feel safe is crucial (Co-Pain Lab).

“Storytelling is key to creating empathy (Zaki).”

The importance of aesthetics should not be underestimated in a health settings (Ingevald et al.).

In “Emotional Design” aesthetics can affect people on a visceral and behavioral level. Careful attention to aesthetics can create a better user experiences (“Emotional Design”).

Doctors do not always know how to approach the subject of pain (Ha et al. 38-39).

Imagination is the great est asset of a scientist and is the essence of competent clinical deci sion making (Haigh and Hardy 410). Storytelling allows for imagination, but it is not considered evidence-based practice.

“My doctor and my moth er don’t understand my pain... my husband is the only one that is there for me, but even he doesn’t get it at times... (Kathy)”

Working with 3d objects created a bridge between sender and receiver when words were not enough (Co-Pain Lab).

Using objects allows for a three way, co-creative dynamic to be formed (Rankanen 67).

Art therapy techniques allow for a more em pathetic and narrative focused approach in com munication (Meltzer).

Define Themes

After sifting through the many insights and interpreting their signif icance, I was able to the define the most common themes that were brought to light through this collaborative design process. These are themes that need to be addressed when designing preferable ways of communication that enable total pain to be better understood. I have defined these into 6 main themes.

System Focused

Need for Education:

An early assumption is that many failed communication experiences are because of a lack of empathy. Lack of empathy is a factor in some cases, however, through this research it has revealed that the prob lem is more systemic in that it starts with how medical profession als are educated about pain. Through the images of pain shared in textbooks, the training, and the maps and scales used, it contributes to the current lack of understanding about pain and failed commu nication experiences. This lack of education can also be extended to people outside of medicine, such as loved ones and even the person themselves who is living with pain.

Working Against a System:

It is evident that proposing a more narrative approach to medicine is working against the system of how biomedicine and many healthcare systems function. The burdens on healthcare, such as too many pa tients and a lack of time and resources greatly impact the ability for people in pain to feel heard and get the help they need. These issues have led to a focus on efficiency of diagnosis and treatment, rather than understanding and listening to people’s narratives. Participants in this project have stated that they feel like “just a number.” These systemic burdens and biomedical ways of seeing inhibit the adoption of new approaches to communicating and understanding pain inside medicine.

Tool Focused

The Value of a Co-Creative Process:

The insights from participants and art therapists revealed the need for people in pain to feel more connected to the receiver and for there to be a reciprocal communication experience. Also, for the process of communication to be collaborative, so that the sender and receiver can collectively find pathways that can help manage pain. The success of this kind of exchange was indicated in the co-creative collages made with interview participants, activities in the Co-Pain Lab and supporting desk research. This collaborative and co-creative experience has the potential to create more trust and hope for the person in pain.

Making Pain Graspable: Communicating through a Visual and Tactile Language

The comments “It’s hard to understand something that is invisible” or “I am not believed,” I heard many times throughout my interviews and desk research. Methods used in art therapy show the ability to use objects as tools to promote the communication of one’s narrative and aspects of pain that the receiver may not understand. The use of a tactile and visual language has the potential for the sender and receiver to see aspects of one’s pain three-dimensionally, providing a new perspective and making something become more “visible” and “graspable.” The potential of objects was proven in the creation of clay conversation prompts in the two Co-Pain Lab workshops that took place during this process. This was further exemplified in the research of art therapy techniques, where objects “bridged” the communication gap.

The research also revealed that objects help create a feeling of safety and decrease language barriers among individuals, as they act as a focal point in conversations and help reduce the anxiety that may come with not having the words to communicate one’s pain.

Importance of Aesthetics:

At the beginning of this process, I was unsure what the role of aes thetics should be in designing a tool kit for pain communication. Learning about Arild Berg’s communicative art objects in a hospital psychiatric ward, showed how materiality, colour and form can not only help open up difficult conversations, it also revealed the im portance of these design decisions in drawing people in and helping them feel safe and calm when talking about pain. Don Norman, au thor of Emotional Design, also highlights the importance of aesthetic decisions in creating a positive visceral experience for users.

Transferability of Tool Kit: Pushing Pain Beyond the Boundaries of Medicine

The interviews showed that the first priority for people was to im prove the communication experience within the medical field. As I explored this more deeply, it was evident that there is a need for peo ple to share their narratives in other realms, not just medicine. There is a need for tools that can aid in conversations about pain between loved ones, at work and with friends, just to name a few. Pain is pro lific and affects every aspect of a person’s life. From the way people are able to function at work, to the difficulties they face performing daily routines in their homes, to their ability to relate with the people closest to them. Is there a way that the conversation about pain can become more open and accepted within these different realms of everyday life? Is there a way that a tool kit can help aid in opening up these conversations more broadly?

Fig. 37 Developing a tool kit concept that uses objects to help facilitate a preferable approach to pain communication.

Embracing Themes in the Creation of a Tool Kit

In Speculative Everything, Dune and Raby ask the question of “who defines what preferable is?” The Initial Research and The Lab phases of the design process have provided me with information from send ers and receivers, both inside and outside of medicine, to help define the themes that must be considered when designing a preferable approach to pain communication. These themes will be used in the creation of a re-imagined tool kit to pain communication.

The creation of this tool kit will incorporate aspects that are both physical, such as objects to help facilitate communication (see fig. 37), and other aspects that involve the intangible, such as rethinking the system and service in which this communication takes place.

In the next stage of the design process, I will ideate a visual and tactile language using objects that can help facilitate a co-creative storytelling process to pain communication. I will then imagine the potential of this tool kit being used both inside and outside of med icine. In the final phase of the design process, called “The Results,” I will address the systemic themes more closely that were defined, such as “Need for Education” and “Working Against a System.”

Ideate and Test

In the ideation and testing steps of the process, I experiment in different realms of discursive design. The first and primary domain is the “practical application” domain, as I am looking to create a tool that can be used practically to help people communicate pain. The second domain I am working in is “social engagement,” as I hope that it can also help educate people about the many complexities that are involved in chronic pain. In other words, one does not have to use the tool kit practically to learn about chronic pain. The tool can also be presented simply to educate people about chronic pain and the importance of communicating total pain.

In the next section of this thesis, I will first provide an overview of the concept for the tool kit, which is derived from the research and main themes, and then I will delve into the development of the indi vidual components.

Overview of Concept

Inspired by art therapy techniques, this tool kit includes a physical platform that the sender and receiver can sit around, acting as a focal point to the conversation. This platform also works as a stage on which senders can place and move around objects to help communi cate their total pain. The objects in this kit are categorized into three categories, with each object representing something different, creat ing a visual and tactile language. The first object, which is placed in the center, represents the person in pain, the second set of objects represents the person’s needs and then the last set of objects repre sent pain, both physical and emotional.

Through the choice of objects, their placement and their movement on the circular platform, the goal is to help bring one’s story and complexities of pain to life (see fig. 38). It creates a three-dimension al map of one’s experience living with pain and their suffering. The map is not stagnate, as the objects can continually change and be moved around.

Fig. 38 An initial sketch of the concept with the platform and objects.

Overview of Tool Kit Terms

Sender and Receiver:

The tool is designed to be used by two or more people but each per son only plays one of two roles--sender or receiver. The sender is the participant (or participants) that manipulate the object to express their pain. The receiver is the person who guides the process and helps interpret the placement of the objects.

Platform:

The circular platform is where the objects are placed and moved around.

Objects (person in pain, needs and pain):

There are three sets of objects. The first object represents the person in pain (who is also the sender) and is placed in the middle of the platform. The other objects represent either pain or needs and are placed on the platform in a position to help tell the story of one’s total pain. This placement will be explained on the following page.

One-on-One and Group Testing

The development of this tool kit happened simultaneously with user testing. It was a back and forth process, making the creation of the kit as collaborative and iterative as possible.

I tested the first and second iterations with four individuals from KMD. The tests were with two males and two females, ranging in ages between 24 to 60. These individuals do not live with chronic pain, however each individual was still able to find the tool useful in talking about pain that has affected them emotionally and/or through injuries. I tested the third iteration with eight individuals. This included five females and three males, ranging in ages from 28 to 64. Four of these individuals live with chronic pain.

I also consulted with three doctors, four counselors and engaged in three group meetings with artists and designers to gain feedback on the design of the tool.

It is important to note that because I am not a medical professional or counselor, it was not my intention to go into details of people’s pain or narratives they shared if they didn’t want to. People were able to choose how deep they wanted to converse about their pain. My intention was to gain feedback on the function, form, materiality and aesthetic of the kit through these initial tests.

What should the objects represent?

Visual and Tactile Language Exploration: Your Needs & Your Pain

To define what the visual and tactile language should be, it took careful consideration and input from potential users. It is important that these objects have enough openness to be able to capture each person’s unique story, but are defined enough that people are not left asking what the objects mean.

From the research, and specifically the co-creative collages made with interview participants, I learned that when you start to learn about people’s needs, and how they are being impacted, it starts to communicate one’s pain. With this in mind, I wanted to focus on creating objects to represent both pain and needs.

The first area of exploration in developing this concept was focused on designing objects that create a visual and tactile language and exploring what aspects of pain and needs should be represented in these objects. Fig.

When I tested the first iteration of the tool kit, I left the objects that represented needs to be open. This allowed participants to choose what they wanted each object to represent (see fig. 39). However, I soon learned that people were struggling to use and communicate with the objects when it was left so open. I also learned that using the tool kit should not require too much mental effort to understand and use, as people may be in pain while using it. With these obser vations, I then assigned specific needs to each object (see fig. 40), providing a framework to the conversation. A huge shift was created once the objects were more defined with labels and people became very connected to the process and were able to articulate their needs easier.

In order to define what needs should be included, I reflected on Maslow’s Hierarchy of Needs (McLeod) and gathered the most com mon needs that participants stated were affected by their chronic pain. These range from basic survival to relational needs, including:

It was also important to have the option for people to be able to choose needs that are not included, as some people talked about needs that are very specific to them. This led me to create objects that have blank labels, making it easy for the sender to choose what they represented.

Placement tells a story:

Along with needs, the second triangular set of objects were designed to represent pain. At first, I also did not assign specific types of pain to the objects, however once I categorized the objects by emotional pain and physical pain it became easier for people to interact with the objects. From there, people were able to delve more deeply into their pain and narratives.

It is the placement of these different objects within the circular plat form that starts to tell a story of one’s pain experience (see fig. 41). For example, after the object that represents the sender, or in other words the person in pain, is placed in the middle, the receiver will ask the sender what needs they have in their life. After the sender chooses their needs objects, from a selection of choices, the sender places them on the platform. If these needs are being met, the sender places them close to the center object that represents them. If the needs are not being met, the sender places them further away, in a position they feel best reflects their story.

The sender is then asked to place the pain objects. If the pain is strong and very present in the sender’s life, they will place it close to the center object. If the pain is not as present, they will place it further away. After the objects are placed, the sender and receiver can engage in a more detailed conversation about what they see and the relationship between the different aspects of one’s story that are represented in the objects and their placement.

Fig. 41 The top, aerial view sketch, communicates a story of someone who’s pain is not as present in their life, as the triangles are placed further away, and their needs are being met, as they are placed close to the person in pain. The lower sketch communicates a story where pain is more present.

What

To visualize what the objects within this kit could look like, I ex perimented with simple paper shapes and colours. The green circle represented the person in pain, who was also the sender. The shapes that represented needs were slightly organic in form and inspired by nature, such as petals or seeds (see fig. 42). And the shapes designed to represent pain were triangles, which one could connect to a feel ing of sharp pain.

These first paper cutouts were tested with three individuals (see fig. 43). The response to the simplicity of the shapes was positive. Sim ilar to how primary shapes are used in the developmental stages of infants, I also want this tool kit to help make pain become a primary conversation and be used by people both young and old. It was im portant that I embedded this message to be reflected in the physical design of the kit.

should the objects look and feel like?

Fig. 43 Testing the shapes with a classmate in the ideation phase.

Fig. 42 First cutout iterations.

Fig. 44 Making the paper cutouts into three-dimensional objects.

Fig. 45 Objects designed to be easily grasped.

After gaining feedback from these quick prototypes, I made the two dimensional shapes into three-dimensional cardboard objects to create a more tactile and visual experience (see fig. 44). Partic ipants then began to place these objects on the circular sheet of paper, which acted as the platform. Once these objects became three-dimensional the positive visceral reactions were evident. One participant shared, “being able to see things in this way (three-di mensionally) does something in your mind. It makes it more under standable.”

The specific sizes of the objects were chosen so that they could com fortably be held in the palm of a hand and moved around (see fig. 45)

While developing these simple shapes, I still wondered about using more diverse shapes that would create unique haptic experiences. When I tested these forms (see fig. 46), people began to over analyze what the shapes represented, distracting them from being able to communicate their needs. All participants commented on how the simple shapes were more understandable and easier to process when talking about something so difficult. I also considered if a medical professional was observing the platform and objects, it would be preferable if they could be able to get a quick impression of one’s needs and pains at a first glance.

After these first iterations and tests, it was evident that the simple shapes that represent the person in pain, their needs and their pain were working well, but still required further refinement in their shape and labeling.

Fig. 46 Experimenting with different haptic experience.

Colour and Materiality

Exploration:

Fig. 47 Testing the objects using different woods.

In the third iteration of the objects, I experimented with different types of wood. Using wood was the material I first envisioned these objects to be made out of, as they create a more calming response compared to materials used in the medical realm (see fig. 47).

The response to the wood in every testing session was positive. One commented on how wood is “grounding and welcoming.” Another shared how it was a “nice contrast” to the materials that are often associated with pain in the medical realm.

Using different types of wood created a natural colour scheme. The variation in the colours helped to create a visual language, as objects that represented one’s needs were made with lighter woods, such as maple and ash, and the objects that represented one’s pain were made with walnut, a wood naturally darker in colour.

When delving into the topic of colour, it led to many differing views. Participants liked the natural wood, however some wanted more colour incorporated. Colours can symbolize many different things, making the use of colour in the tool kit an aspect that will be careful ly considered in the final development.

Platform Exploration:

In this tool kit there are two phases of “holding” the objects. The first is the box that holds the objects and the second is the platform on which the objects are placed. Both of these elements are very import ant to the experience and the process of communication, which will be further explained below.

When gaining feedback from Cecilie Meltzer, she articulated how the use of objects and a stage helps take away “performance anxiety” that might come with communication, as the focal point of the con versation is on the stage and objects, rather than all of the focus be ing on the sender. In testing the tool kit, one participant commented, “the physical platform created a more comfortable exchange.” It gave a feeling of connection, but also created a “safe distance” between the sender and receiver.

For the platform material, I simply used different types and colours of paper in the first iterations (see fig. 48). Choosing the shape of the circle was also important because it represents “wholeness.” With a goal to communicate total pain, this symbol is more suitable than the human body. In these tests, no one commented on how the hu man body was not present. Rather, people commented on how they liked the circle and what it represents. I believe that not using the human body enabled the conversations to be more open to the many complex layers involved in chronic pain, beyond the physical.

I also tested what I am calling “time rings” around the platform (see fig. 49). Each ring represents a different stage of pain. A blue ring represents the past, while a yellow ring represents the future. These rings are a physical gesture used to help delineate whether one is communicating about the pain in their past, present or future. The receiver is the one that can change these “time rings,” as their role is also to facilitate. Pain involves a dynamic story over time, so this tool kit is designed to give people the option to communicate their pain not just in the present, but also their pain in the past and their hope for the future.

To create a cohesive aesthetic language for the tool kit, it is important that the platform and rings are made out of wood and use colours that will reflect the symbolism of these different aspects mentioned above. These design improvements will be made and reflected upon in the final production.

What should hold these objects?

Fig. 48 Testing a white circular platform.

Fig. 49 Testing a black background and “time rings” around the platform.

Box Exploration:

After exploring the development of the objects and deciding to make the platform circular, I also wanted to think carefully about the box that would be the holder for these objects. The shape of the box was designed with simplicity in mind and also to tell a story. The indents that are made where the objects are held has meaning. As humans, the pain that we experience and the needs that we have all imprint us as human beings. This indent is both to hold the place of the object and also to reflect this idea of the “imprint” on us.

The box is also designed to walk the sender and receiver, who acts as the facilitator, through the different stages of the conversation. For example, the first lid in the middle opens up the box to the object that represents the person in pain (see fig. 50). Once this object is placed in the middle of the platform, the sender can choose whether they want the receiver to open up the lids for the next stages, which are about needs and pain (see fig. 51). Dividing the tool kit into different stages was important because these conversations can take time and the sender may not be ready to go through all stages in one sitting (see fig. 52).

In the final production of the box, the shape and construction ma terial will be explored further, as I want the aesthetics and design to reflect the importance of the conversation.

Fig. 51 The other two lids can be opened to access the Needs and Pain.

Fig. 50 The middle lid opens up to the first object that is to be placed.

Fig. 52 Exploring a box design that can walk the sender and receiver through a conversation about pain.

What was your experience?

When testing the tool kit with senders, I focused on four questions. Did you feel that you were able to communicate aspects of your pain that you were not able to before? Did you feel that the com munication was more collaborative (involving both the sender and receiver)? Did you feel heard? Did the sender and receiver gain new insights about the person’s pain?

Out of the eight tests that I carried out, I was pleasantly surprised on the success of using this tool. In some cases, it would have been good to have a therapist or medical professional present, as I didn’t antic ipate how deep the tool would enable people to communicate and how much I would learn about their pain. In every test, people com mented that they were able to communicate a lot more about their pain compared to prior experiences using pain maps and scales.

Participants commented that they felt more heard because the use of the tool kit involves both the sender and receiver. The kit is designed for the receiver to act as the facilitator, which led to a more co-cre ative process. Many also commented that it helped them articulate what is too complex with just words and allowed them to see their pain through a new lens.

One participant stated,

“The tool works like a back door in that you end up communi cating your pain when you don’t even realize it. I saw things in a new way and I think whoever I am using it with, whether it is my doctor or family member, that they would be able to understand my pain better.”

People also commented that the kit helped them feel more heard be cause it allowed them “to walk through” their narrative of living with pain. The kit also has a speculative component because it involves a step of looking at what their hopes are for the future, and what direction they would like to take to try and help alleviate or manage the pain.

One participant noted that the tool kit helped her understand her situation better. She stated,

“Using the tool kit allowed me to see how much my nutrition has been affected and how that is an area that I need help with.”

Another shared, “The tool allows you to discover so that you can ponder your pain, how it has affected you and where you want help.”

An important aspect to highlight is that the use of objects and the role of the facilitator have all been designed to help create a safe interaction. When communicating about pain, whether it is with a medical professional or loved one, it can be daunting and make one feel vulnerable. The feedback and observations made during these tests confirmed that the tool kit created a safe experience for people to communicate their experience living with pain and the effects it has had in their life.

This goal for creating a safe communication experience is why the tool kit is divided into stages. The person in pain can decide how deep they want to go and can easily “press pause.” The transferabil ity of the tool is also important. It is designed so that it can be used in different settings, by receivers both inside or outside of medicine (see fig. 53). The person in pain can choose where and with whom they want to use the tool kit with.

During all of these tests, I was in the role of the receiver. In some cases this probably influenced the success of the process. Being the designer of this tool, I clearly understand how to use it. My expe rience living with chronic pain also likely gives me insights, which others may not have, on how to guide the conversation and use the tool. This means that there must be a clear guide developed along side the tool kit. This will be further addressed in the final develop ment of the project.

Fig. 53 Testing the tool kit with a classmate in a school setting. It allowed us to engage in an in-depth conversation about pain. I also gained valuable feedback on the design.

Group Setting

I had the opportunity to test the tool kit in a very personal group set ting with some of my family. This experiment was a surprise to me because of how much I learned about my sister and mother’s pain. I learned that I didn’t know a lot about their pain and suffering even though I am very close to both of them. It also made me grateful that this tool created the opportunity to help my own family open up and communicate their pain and needs.

When my mother, sister and I were sitting around the table choosing objects and talking about why we chose them and why we placed them in certain areas on the circular paper, my niece Ayla, who is seven, slowly came closer. I didn’t realize that she was listening to me explain how the kit worked. As Ayla came up to the table she grabbed one of the pain triangles and asked “Can pain be when your crying because your dog died?” She explained that when her dog died she couldn’t stop crying and that the “pain was in my body.” As she said this, she placed the pain block close to the object that repre sented the person in pain. She then moved the block away and said, “but now I’m ok because that was a long time ago and the pain is far away.” She took the block and placed it on the outer edge of the circle (see fig. 54).

This was a pleasant surprise to me because even though she is young, she understood the concept and it was an opportunity to talk to not only adults about pain, but also young people. In my own experi ence, I have found it difficult to broach the topic of pain with family members, especially when they may not know how to talk about it when they feel it themselves. I believe it is vital, for the well-being of people of all ages, to have a tool kit that can help facilitate these conversations. It is also vital for creating a shift in the way we under stand and communicate pain.

Due to the COVID situation, testing in one-on-one and groups settings proved to be very difficult. Bringing this tool kit into a group dynamic is something that I would like to test further when the situation allows.

Fig. 54 Ayla places her Emotional Pain block on the outer edge.

Areas for Further Consideration in the Final Production

There are still aspects that need further testing and improvement, such as final refinements made to the objects, the box and platform. These refinements will be made and shared in the “Refine and Pro duce” section that follows. The materiality, form and function are all important aspects that influence both how people respond to the kit and whether it is successful in helping people communicate their pain.

An area that needs further consideration is how a tool like this could be disseminated and used because most doctors would not have the time to use a tool kit like this. Some also may not want to use a tool that is not evidence-based. These are aspects that will be discussed in the final chapter and outcome called “The Pain Clinic of the Future.”

Object Considerations

In the one-on-one tests, the use of the simple objects was liked by every user. However, a few noted that it would be good to add some additional objects that are more representative of their pain and what it feels like. The wood triangles are good objects to start with, but one participant stated, “what if you added objects that are more pain like.” This is something I was interested in exploring because many of the clay objects created in workshops were so unique and reflective of what pain might “look and feel like.”

Before heading into final production, I focused on ideating a series of pain objects that were more expressive and held many different meanings of what it feels like to have pain, which are shown on the following pages.

Potential of Kit

Overall, testing various iterations of the tool box showed that this kit has a lot of potential to create a preferable approach to pain com munication by meeting the key needs of the users. These needs were outlined in the main themes, such as the need for a tool that can communicate the complexity of pain and create more connection and collaboration between the sender and receiver.

Many of the participants voiced how being able to map out their total pain in three dimensions and move around objects was a very powerful way to give them and the receivers a new perspective of their pain. The potential to not only give the receivers more perspec tive, but also the senders, was an unexpected and an extremely valu able benefit to the tool. One participant, who lives with rheumatoid arthritis shared that the kit “created a picture of my pain and how it has affected my life in a way that I have not experienced before. I saw my pain differently.” This tool kit has the ability to give people more control and understanding of their own narrative.

Going Deeper: Exploring an Additional Set of Pain Objects

When I received the feedback for the need to have objects that could describe what pain feels like, I tested some objects that could become an addition to the tool kit (see fig. 55 and fig. 56). Senders could use these if they want to “go deeper” into communicating their pain, especially the physical aspects.

I felt some reluctance to make objects that represented specific as pects of pain because I feared that it would reinforce the metaphors that have been used in pain maps and scales for many years. How ever, when talking with people in the ideation phase, they felt that there is a place for these metaphors when they are used as prompts to “go deeper” and not as descriptors of one’s pain, as they are often used within medicine. Metaphors have the potential to be a great tool when they are used in a thoughtful and appropriate way. With this reflection, I felt confident about creating these additional objects for the tool kit.

The design of these objects are inspired by the clay shapes made in the Co-Pain Lab workshops. I categorized the shapes by the com mon forms and words used to describe them (see fig. 57). These pain shapes are a starting point for an “open” collection of tactile and visual objects, meaning that more objects can continually be made over time. This openness means that as this collection grows it will give people a greater choice of objects to help communicate their pain.

Fig. 55 A “shock” pain object.

One participant stated, “I like the mix of shapes that are simple and then one’s that clearly signify what pain feels like.” Combining these pain objects with the first level of objects will attempt to help com municate one’s total pain in an even more comprehensive way.

Fig. 56 A “shard” pain object.

Fig. 57 Finding patterns from the clay objects made in the Co-Pain Lab workshops and creating pain objects based off of these shapes and words used to define them.

Optimal Outcome of Tool Kit

This last step of The Lab, takes insights from ideating and testing into a refined final outcome of the tool kit. From these insights, it is my goal to create a visual and tactile language that can be playful, interactive and hopeful in its approach to communication. I want the aesthetic expression and function of the objects, box and platform, to reflect these aspects, along with incorporating materials that will help people feel “grounded” and calm when using the kit.

Along with the physical expression, the function of this tool kit, from the unboxing to the placement of the objects, has been de signed to walk people through a more preferable pain communica tion experience. I hope that these objects and the overall experience can help “bridge the communication gap” and make pain more graspable and visible.

Production Strategy

From feedback on the quick physical prototypes used in the ideation phase, I sketched new iterations and refined aspects that proved to work well. I then brought these final sketches into a digital 3d model. It is essential that the creation of this tool kit lives in a digital file, so that it can be shared and re-created by many different people. From the digital files, I decided to format them so that the components are made with either the CNC, laser cutter or 3d printer. Having these digital tools not only makes them quick to duplicate, but also easier to refine. However, it was important that I was still able to maintain a feeling of craft in the final design, which is something I aimed to do through the choice of the materials and design of the forms.

Tool Kit Outcome

To reflect on the outcome of the design expression and function of the tool kit (see fig. 58), I will walk through the individual design choices for each element on the following pages. And, I will walk through how it is designed to be used between senders and receivers.

Fig. 58 The outcome of the tool kit after reflecting on the feedback and experi mentation that took place in ideating and testing it with users.

Photos of tool kit taken by: Alterskjær, Irene. 2021.

Fig. 59 Re-imagine pain through the use of the tool kit

The Box

The Box is the holder of the objects. With rounded edges and walls made of walnut, the box aims to aesthetically reflect the importance of the conversation and invite a person to the conversation. The neutral colour allows it to fit into the design of many different environments, whether it be a medical office or home. The size was chosen based off of the size of a large book, so that it can be easily stored or placed on a table (see fig. 59).

Three lids spark a feeling of curiosity, with the middle piece having a hexagonal opening. This opening acts as an indicator for the receiver to lift as a starting point to the conversation (see fig. 60).

Fig. 60 The receiver starting the conversation

The Platform

The platform is where the objects are placed to help map and share a person’s narrative of total pain. The size is very important, as the distance between objects communicates the severity and dynamics of one’s pain experience. The size of the platform allows enough space for these aspects to be communicated, while also giving a comfortable position between the sender and receiver (see fig. 61).

Time Rings

The inner most ring represents past, the middle is present and the outer ring is future. If the sender is talking about their present pain, the middle ring will be flipped to show its colour (the backside does not have a colour). This works the same for the present and future ring. It is a gesture designed to signify the importance of collecting a dynamic story over time and as a reminder to the sender and receiver of what “time” they are communicating about (see fig. 62).

Fig. 61 Interacting with objects on the platform

Fig. 62 The sender and receiver turn the present “time ring”

Opening the Box

1. Person in Pain

The first object that people encounter represents the person in pain (the sender). It is a hexagon made out of oak. This shape was chosen because of its many sides, which represent the many different aspects that are involved in one’s total pain. And the colour is warm and in viting to help create a calm aesthetic when talking about something difficult. The size of the object can be easily grasped in the palm of one’s hand.

There is a slight indent in this object, to create an opening for a card with the sender’s name to be written (see fig. 64). This object is then placed in the middle of the platform, putting the person in pain at the center of the conversation.

2. Needs

Once the first object is placed in the middle, the receiver can open the lid that reveals the needs (see fig. 65). These objects are made out of ash and are carefully rounded to offer a smooth feeling. There is also a pointed tip, which allows users to point the needs in a certain direction on the platform.

These also have a slight indent, so that a thin wood insert can be placed inside. Each insert is labeled with a different need. The inter changeability of the labels is key, as needs can vary between person to person (see fig. 66). There are also inserts that are left blank so that the sender can choose a need that may not be represented (see fig. 67).

The sender will choose their needs and place them on the platform. If they are placed close to the person in pain, that means one’s needs are being met. If they are placed far away, then these needs are not being adequately met.

3. Pain

After the needs are placed, the last lid is opened to reveal the pain (see fig. 68). Walnut is used, because it is a dark and creates a differ ent visual language from the needs. There are six triangles that vary slightly in size, giving people a choice of what size they feel best rep resents their pain. The words “emotional” or “physical” are engraved on the objects (see fig. 69). These labels act as guides to help people choose and place their different pains. There are also blank triangles, which can be used to articulate a specific or different type of pain.

These objects are then placed on the platform. If they are placed close to the person in pain, then the pain is very strong and present in one’s life. If they are placed further away, that pain is still present, but may not be affecting the person as much.

Fig. 64 The sender’s name is written and placed inside the object before it is placed in the center of the platform.

Fig. 65 The lid is removed to reveal the needs objects.

Fig. 67 Blank inserts are included so senders or receivers can write needs that may not be present in the box.

Fig. 66 Each needs object has interchangeable inserts.

Fig. 68 The receiver removes the last lid to reveal the pain objects.

Fig. 69 Objects are labeled with different pains.

4. Going Deeper: Pain Objects

After the first three stages of the box, as defined by the three lids and different objects, the receiver can ask if the person wants to go deeper into communicating what their pain feels like. If the answer is “yes,” the first layer can be pulled up, to reveal the lower level of the box (see fig. 70). This facilitates a more in depth conversation.

These objects can be placed on the platform, alongside the first pain objects, or where the sender chooses.

The objects on this deeper level are diverse, with each one represent ing a different experience of pain (see figures 71-76). The forms were created based off of objects and drawings created by participants throughout The Lab phase of this project. The white 3d printed ma terial is an outline of these pains. This material was chosen because it creates a contrast from the other objects, allowing these pains to “stand out” on the platform. Each outline is filled with a different material to create a different haptic and visual experience. Some are weighted and gritty, while other are open and hollow. These haptic design choices are made to reflect different feelings of pain.

This layer of objects can continually change and more can be added over time, as it is an “open” tactile and visual language of pain.

5. Movement of Objects

As the sender and receiver engage in conversation about the chosen objects and their placement, they can continually be moved and interacted with. This movement is important because one’s experi ence living with chronic pain is not stagnate.

This movement on the platform also allows the sender to move the objects in a position that reflects what they would like their future to look like, or what their life looked like in the past before the pain. Movement is important in telling a narrative of total pain.

Fig. 70 The first level of objects is removed to reveal the pain objects that allow people to go deeper into their pain if they choose.

Fig. 72 “Pinching”

Fig. 71 “Sharp and monster like”

Fig. 73 “Really heavy”

Fig.

Fig. 74 “Grinding, bone on bone”

Fig. 75 “Tight, like something is going to break”

Fig. 76 “Sharp like glass”

The Results

The Clinic

This next section will take another look at the main themes de fined earlier in the process and propose a preferable approach to the overall system of pain communication. I will also dis cuss how this tool is at the center of this change. It will answer questions like who will facilitate this tool? And where will it be used?

In Discursive Design: Critical, Speculative and Alternative Things, the authors talk about the importance of the dissemi nation of the designed artifact into the world and the context in which it will be used. They discuss how the context directly affects the experience and interactions with an artifact, in this case a tool for communication. They state, “The discursive de sign process involves not just choosing an appropriate dissem ination context but designing new appropriate, and various deployment sites and conditions (Tharp at al. 258).”

Potential contexts of dissemination for this tool kit are both inside and outside of medicine. However, implementing a tool like this, especially inside medicine, is a challenge because of the dominating paradigms that have led to the use of commu nication tools that are more quantitative, efficient and seen as evidence-based. This means that along with the design of the tool kit that the context and overall system it is used within also needs a redesign.

In redesigning this context and system, I will take a speculative approach, which has been derived from key insights provided by research participants. This future scenario is designed as a “social engagement” illustration to encourage people to start thinking differently about the system of pain communication and see the potential of what a more preferable approach to a system that embraces narrative could look like.

The “Art of Conversation”

Historically the word “clinic” was not defined as a physical space. Rather, in Latin the word “klinē” meant bed and then it became “klinikē (tekhnē)” which meant “bedside art.” In the mid 19th cen tury this definition shifted towards being a medical term. It meant “teaching of medicine at the bedside (“Clinic”).” This means that the historical root of the word “clinic” is about creating personal and safe interactions between two people. It was about the “art of con versation.” Inspired by this historical meaning and the value it has to offer, this “Clinic of the Future” is not defined by a building. Rather, it is a place of interaction between two people to try to improve the well-being of the person in pain.

The Story Collectors

This clinic of the future would foster this connection and interac tion through the creation of a new position inside the medical realm called the “Story Collector.” This person would not have to be medically trained, but rather would be trained in the facilitation of the tool kit and have a sincere interest in receiving people’s stories, and may even live with chronic pain themselves.

The Story Collector is the first person that people would see when entering the medical realm regarding their pain. Conversations with the Story Collector would take place in a succession of interactions, collecting and documenting one’s narrative over time through the use of the tool. And the time allotted for each interaction would de pend on the needs of the person in pain. Because the Story Collector is a dedicated position to letting people be heard, the sender is not put under any time constraints to communicate their pain.

These interactions could take place in many different settings. For example, one may want to see the Story Collector in their hospital room, because they are restricted to their bed due to pain, or it could be in a place that the person in pain feels the safest, such as their home.

Opening Pathways to Help People in Pain

The sender’s total pain is always collected before any prescriptions or treatments are recommended. The information gathered from the tool kit can then become the center piece for a collective conversa tion. Various medical professionals can gather around the platform and see the needs, pain and possible pathways that the person would like to take to help them in their journey to managing their pain. Creating a three-dimensional map with the tool kit provides an “opening,” in that new ideas can collectively be formed to help the person in pain (see fig. 1). For example, it may become visible through the placement of objects that the person wants help with their nutrition and does not want medication, where another may say that they want medication but they also need therapy to help rebuild their personal relationships. The hope is that there can be an open conversation and sharing of one’s total pain before any opioids are prescribed or assumptions are made about what the person needs to help them manage their pain.

Fig. 1 A sketch to show the different steps in a re-imagined system of communication inside medicine.

Fig. 2 A conversation about pain taking place at school between peers.

Fig. 3 Anyone can be a Story Collector.

Transferability of Kit: An “Everyday Device”

Looking into the history of pain communication at the beginning of this design process revealed how pain became progressively “med icalized” over time. This clinic of the future wants to rethink these boundaries and expand the conversation about pain beyond the walls of medicine.

The tool kit is designed to achieve the goal of blurring these bound aries and using it within different domains, as it can be easily used not just in a medical setting, but also at home with family or in a therapist’s office, just to name a few. It is not defined as a “medical device.” Rather, it is an “everyday device.” Talking about pain outside of medicine is especially important, because it is often the people closest to someone in pain that may be able to help them the most when they better understand their pain and suffering (see fig, 2).

A Collective Conversation

Because the tool kit is designed to be used easily across different domains, anyone can become a Story Collector (see fig. 3). Through the broader implementation of the tool kit and more people becom ing Story Collectors, the hope is to no longer define pain as purely a “medical problem,” but rather to make it a collective responsibility and conversation that also takes place in many different domains.

For example, the sender might want to use the tool kit with someone that they trust or maybe with someone that they wished knew more about their pain. For someone like Kathy, who was interviewed in The Lab phase, she may want to sit down with her mother, who she wished understood her pain better. Or maybe someone like Lainee, who wished her boss understood the complexity of her pain and how it affects her. There are no limits on who becomes a Story Collector and where this tool is used (see fig. 4).

Fig. 4 The tool kit creates an opening to talk about pain in different domains.

Learning through the Process

At the beginning of this process, I asked the question “how can de sign improve the way pain is communicated?” In the initial research, I soon learned that in order to improve the way pain is communicat ed that it would require a systemic paradigm shift. The current tools used for pain communication inside medicine are created based off of a biomedical paradigm, which do not succeed in communicating the many complexities that are involved in chronic pain. To help shift this paradigm and improve the way pain is communicated, this project re-imagined tools and techniques that could communicate the many complexities of one’s pain through a narrative approach.

I believe that both through the process and the final outcome, this project showed how design can improve and re-imagine pain com munication.

By carrying out a unique design process for this project, which included various steps in the The Initial Research, The Lab and The Results phases, it allowed me to take inspiration from different design methodologies, such as common models, like the Double Diamond design method, and more “alternative” approaches, such as discursive design. A key aspect that I learned from taking a discur sive approach is that design should not always be approached to solve problems, but rather to challenge exiting ways of doing things and envisioning new and preferable possibilities. This led to the development of a process that involved speculation, reflection and the imagination of a more preferable approach to pain communica tion.

In Speculative Everything, Dunne and Raby discuss the question of “who defines what preferable is?” The creation of the Co-Pain Lab was at the core of this process and it worked as a vehicle for people to share experiences communicating pain, both inside and outside medicine, and collectively address what a preferable approach to pain communication could look like. To facilitate this discourse, I carried out workshops and interviews where I experimented with art inspired techniques with participants. I learned just how valuable objects can be in helping facilitate discourse about difficult subjects such as pain. It was the input from participants, and the objects that they created through the process that led to further research about art based communication techniques and later to the creation of the tool kit.

In each stage of the design process, I reflected carefully on the in sights collected, which led to the main themes defined in this proj ect. These themes revealed that in order to shift the way we com municate pain to embrace narrative and collaboration, this tool kit would have to include not only the design of a tangible tool, but also the overall design of a new system to help support this tool.

A Preferable Tool kit

The design of the tool kit was centered around the creation of objects which provide people with a symbolic, visual and tactile language to communicate pain. Through ideating and testing, it showed how using these objects, especially the pain objects, gave people in pain a tool to communicate something that is not tangible and share aspects of their experience that are difficult to articulate through words alone. The objects are tangible representations of needs and pains, thus freeing people (removing language obstacles) from having to use words to communicate their pain. The pain objects allow senders to see their pain first, which helps them to translate the image of their pain (the pain object) into words and prompts for further discourse, so that one can express “invisible pain” and suffer ing to the receiver.

The success of this tool in allowing people to “see pain” and facili tate communication, means that this tool has a great potential to reside in the “practice-based” domain of discursive design. For example, this tool could be used in various settings, such as in a clinic, therapist’s office or family home. It provides an “opening” for difficult conversations and functions as a focal point for senders and receivers to gather around, fostering intimate and meaningful conversations. Using this tool not only allows one to communicate their pain, it allows people to take a look at the future and collabo rate together to help find pathways for pain management. With this tool, one can take control of their narrative and “edit” their stories through moving the objects and reflecting upon them.

Along with the “practice-based” application, it is also a discursive tool that can be used in the domain of “social engagement.” This domain aims to inform others and heighten awareness around im portant topics (Tharp et al. 124). For example, engaging with people in a workshop setting with this tool kit and discussing the role of the Story Collector, can facilitate a dialogue about the struggles of communication and how it can be improved. It can help people see the importance of a narrative approach when trying to communicate and understand one’s total pain.

Towards a Shift

As noted at the beginning of this thesis, tools have the power to change the way people perform certain tasks. And the results of these tools can lead to new outcomes that can change the way people see things. When people begin to see things differently, it creates an opportunity for a paradigm shift to occur. This means that the more embedded the use of this tool kit becomes inside and outside of medicine, the more potential there is towards shifting the way people communicate, understand and treat pain.

An Open Future

When looking to the future, I believe that this project needs to have an “open conclusion.” This project will remain open in two waysthe process and the outcome.

Through the process, I gathered hundred of insights and defined themes to reflect these insights. I believe the outcome of this proj ect led to a preferable way of approaching pain communication, but there is still more that can be done to improve communication. There were many other insights that could be reflected upon in different ways, which would lead to different results. The creation of the Co-Pain Lab is a way to keep the process of reflection and re-imagination open. It is a “living lab” that will continue to be used as a collaborative vehicle to bring together voices and address issues around chronic pain collectively with people inside and outside of medicine. As more people come together to improve pain commu nication and more is learned about chronic pain as a whole, more change can happen.

The outcome of the tool kit will also remain open, as the object language that was created is considered an “open” tactile and visual language. The goal is that over time more workshops can take place where people can mould objects of their pain and reflect upon them. As we learn more about pain and more representations are created, the object language can continue to grow and evolve. With a hope to give more people a voice to their pain.

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Introduction

Figures 1 - 5,7

The Initial Research

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Ceneta, Manuel. “AlgometRX.” Innovation District. 10 Jan. 2019. https://cutt.ly/Blu1doN. Accessed 1 Feb. 2021.

Fig. 14

“Colour Analog Scale.” verywellhealth. 5 Jan. 2020, https://www.verywellhealth.com/pain-scales-assess ment-tools-4020329. Accessed 1 Feb. 2021.

Fig. 15

Jaatun, Ellen A. “User-Centered Development of a Computerized Pain Body Map.” Sept. 2016, pp. 1-97, Researchgate, https://www.researchgate.net/ publication/316791737_User-centered_develop ment_of_a_computerized_pain_body_map_Digital_as sessment_of_pain_distribution_in_patients_with_ad vanced_cancerEnter_title. Accessed 5 June 2020.

Fig. 16-17

Fig. 18 Fig. 19

Alterskjær, Irene. 2019.

“Henri Matisse.” MOMA, https://www.moma.org/in teractives/exhibitions/2014/matisse/the-cut-outs.html. Accessed 19 Feb. 2021.

The Lab

Fig. 1

“Creating Masterpieces.” huck, https://www.huckmag. com/art-and-culture/art-2/artists-bed/. Accessed 19 Feb. 2021. Candy, Stuart. “The Futures of Everyday Life: Politics and the Design of Experiential Scenarios.” ResearchGate, 15 Aug. 2010, pp. 1-371, doi:10.13140/RG.2.1.1840.0248. Accessed 20 Feb. 2021.

Fig. 5, 18-24

Fig. 26 Fig. 29

Alterskjær, Irene. 2020.

“Grasp.” https://grasp.global/for-users. Accessed 20. Feb 2021.

Meltzer, Cecilie. “Life In Noah’s Ark: Using Animal Fig ures As An Arts-Based Projective Technique In Group Work To Enhance Leadership Competence.” Organiza tional Aesthetics, vol. 5, no. 2, 2 Jan. 2016, pp. 77–95, https://oa.journals.publicknowledgeproject.org/index. php/oa/article/view/7. Accessed 2 Jan. 2020.

Fig. 30 Fig. 31 Fig. 32

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The Results: The Clinic of the Future

Fig. 33

Bodewes, Nicolette. “Tools for Therapy.” http://nicolette bodewes.com/. Accessed 1 Dec. 2020.

Fig. 34-35

Ingeberg, Mette Holme, et al. “The Essential Dialogue: A Norwegian Study of Art Communication in Mental Health Care.” Journal of Psychosocial Nursing and Men tal Health Services, vol. 50, no. 8, Aug. 2012, pp. 22–30, doi:10.3928/02793695-20120703-01. Accessed 18 Feb. 2021.

Figures 58-62 Figures 64-76 Figures 2-4

Alterskjær, Irene. 2021. Alterskjær, Irene. 2021. Alterskjær, Irene. 2021.