Description:

Chronic Pain is an inward, invisible experience that affects an individual's life's spiritual, mental, and physical elements. As a result, those with chronic pain may often experience anger, stress, depression and other life-altering emotional factors. In this way, chronic pain is a complex experience that affects more than the physical aspects of a person's experience. However, some people with chronic pain are asked to use clinical assessment tools that reduce this complex experience to a single number, not allowing a patient to flesh out and explain how chronic pain is affecting their life. This may lead to miscommunication about what patients mean, a disjointed relationship with their clinician, and ineffective clinical solutions.

As chronic pain is an unseen personal experience, having tangible objects can assist in communicating a person’s chronic pain experiences. By using tangible objects, chronic pain can become ‘real’ and be better communicated with a clinician. Objects allow patients to expand on their experiences and go deeper into what is affecting their lives, helping a clinician to make better-informed decisions about a patient’s care. Moreover, there are next to no clinical tools that involve patients in telling their stories about their lived experience of chronic pain.

Understanding Experiences allows patients to look at all the objects and easily interact with them. The objects are designed to be handheld and be passed back and forth between patients and clinicians. When making the objects, I designed them to be unique, engaging, and support the expression of different emotions. I avoided making the objects look manufactured or mass-produced, as patients wanted them to portray their chronic pain. This meant having objects which could be and look like they could be personal artefacts rather than tools to solve a specific problem. This meant that patients with different cultural backgrounds could also use it. Having the toolkit able to do this meant clinicians could investigate a significant barrier within chronic pain communication, which is the cultural interpretation of chronic pain. This is because most quantitative assessment tools overlook personal cultural navigations of the lived experience of chronic pain.

The final objects were produced in response to feedback from patients, clinicians, and chronic pain experts. There had to be enough variety to address how differently patients viewed their pain experiences while having some similarities to amplify the differences between aspects of the patient's chronic pain. Chronic pain experts also mentioned they wanted some objects to be more “beautiful” than “spiky” or “sharp” to have patients focus on any ‘good’ in their chronic pain experience. Along with the “good”, some objects also address the emotional parts and the experiences in life hindered by chronic pain, such as sleep, work, stress, and anxiety – these are often looked at by clinicians and were suggested as important by chronic pain experts and patients.

When interacted with, the objects can have meaning put into them to resemble or act as symbols of the patient’s pain experience. This is further done through the carefully designed exercises in the toolkit, which help unpack specific aspects of a chronic pain experience. Understanding Experiences has the aesthetics of a clinical tool, so clinicians and patients can easily recognise it as ‘legitimate’ in a clinical setting. In addition to making the toolkit enjoyable, it has a retro abstract style to it, so it can look appealing and not look like most other clinical tools. The icons on the packaging are designed to reflect the objects in the box.

The project engaged with clinicians and chronic pain patients at TARPS (The Auckland Regional Pain Service), who were involved throughout the toolkit's development, including giving feedback. The project also involved chronic pain researchers and clinicians outside of TARPS who gave feedback on later iterations and the final toolkit. With these participants, the function and objects of the toolkit were improved to better suit the purpose of the toolkit.