Sound of Care: Towards a Co-Operative AI Digital Pain Companion to Support People with Chronic Primary Pain

This work investigates the role of sound and technology in the everyday lives of people with chronic primary pain. Our primary goal was to inform the first participatory design workshop of Sound of Care, a new eHealth system for pain self-management. We used an ethical stakeholder analysis to inform a round of exploratory interviews, run with 8 participants including people with chronic primary pain, carers, and healthcare workers. We found that sound and technology serve as important but often unstructured tool, helping with distraction, mood regulation and sleep. The experience of pain and musical preferences are highly personal, and communicating or understanding pain can be challenging, even within family members. To address the gaps in current chronic pain self-management care, we propose the use a sound-based AI-driven system, a Digital Pain Companion, using sonification to create a shared decision-making space, enhancing agency over treatment in a co-operative care environment.