Co-Ideating a Digital Pain Companion: Exploring How Music Can Support Daily Chronic Pain Self-Management
Bleiz M. Del Sette, Charalampos Saitis · 2026 · ACM Transactions on Computing for Healthcare · doi:10.1145/3807781
Summary
This paper presents the co-ideation of the Digital Pain Companion (DPC), a proposed music-integrating wearable interface for daily chronic pain self-management. Grounded in the psychosocial dimensions of chronic pain rather than biomedical symptom tracking, the research addresses a gap in HCI design for primary pain syndromes such as fibromyalgia and non-specific low back pain, where pain is unpredictable, lacks clear aetiology, and is strongly shaped by emotional, social, and cognitive factors. Eight participants were engaged (six people with chronic pain, one family carer, one physiotherapist) recruited through PainUK and a local charity in East London. The study used a three-stage participatory co-design approach: preliminary semi-structured interviews informed by the UTAUT framework, followed by two in-person co-design workshops. Workshop 1 used brainstorming and video prototyping to explore how music interacts with chronic pain scenarios. Workshop 2 used collaborative storyboarding, soma trajectory sketching, and physical mock-up prototyping to deepen understanding of the bodily and psychosocial dimensions of pain. Analysis combined iterative thematic and narrative analysis. The initial DPC concept -- a closed-loop system automatically responding to physiological signals with music -- was substantially revised through the co-design process to become a semi-open system with active user control, physiological monitoring, and capacity for social communication. Music was conceptualised not as a medical treatment to be prescribed, but as a flexible, self-selected coping resource that supports distraction, meaning-making, and social communication around pain.
Key findings
Four overarching themes emerged from the combined interview and workshop analysis. Music as distraction: Participants consistently used music to redirect attention away from pain and close out external stimuli. Crucially, effectiveness depended on self-selection and variation, not musical genre or prescribed calming qualities. Repetition reduced effectiveness, and participants frequently switched between songs, podcasts, and other audio media. Self-selection and change: No pattern linked specific musical forms to specific pain scenarios. Choices were deeply individual, mood-dependent, and context-sensitive, reflecting evidence from music-induced analgesia research that preferred music outperforms non-preferred music for pain relief. Communicating pain through music: Participants described the persistent struggle to make invisible pain visible and believable to carers, doctors, and social contacts. Music emerged as a potential vehicle for externalising pain experience, signalling its presence or intensity to others and creating shared understanding. Ownership and embodied experience: Chronic pain creates physical tension extending into psychological and social discomfort. The revised DPC prioritises active control and agency, enabling users to influence their own treatment through music rather than being passive recipients of automated support. Four mock-up prototypes were produced: headphone-phone systems, flexible stretch bands, and a squeeze ball, emphasising adaptability, discretion, and low-effort interaction.
Relevance
This paper is relevant to digital accessibility practitioners working on assistive and supportive technologies for people with chronic conditions. It demonstrates why biomedical or symptom-tracking paradigms are insufficient for health conditions shaped by psychosocial factors, and how co-design with affected communities fundamentally reshapes design assumptions. Key takeaways: People with chronic pain face significant stigma and pain invalidation; technology that externalises pain experience ("making the pain visible") can reduce stigma and improve communication with healthcare providers. Passive, automated systems risk eroding agency -- active user control is essential when conditions are unpredictable. The paper explicitly acknowledges that the music-first DPC excludes d/Deaf and hard of hearing users, and proposes haptic alternatives as an equity consideration -- a rare acknowledgement of intersectional accessibility needs in a music-HCI paper. Limitations include the small, London-specific sample and the exploratory nature of the DPC concept, which has not been deployed or evaluated for effectiveness.
Tags: chronic pain · co-design · music therapy · wearable technology · self-management · pain communication · soma design · sonification · person-centred design