- Pain is a deeply embodied, emotional experience, often described with metaphors of darkness, oppression and distortion.
- A perceptual gap exists: clinicians focus on technical care, while patients and caregivers emphasise emotional meaning and caregiver burden.
- Narrative medicine identified unmet needs, supported reflection, and promoted more empathetic, patient centred approaches in pain management.
BMJ Open. 2026 Jul 30;16(7):e105845. doi: 10.1136/bmjopen-2025-105845.
ABSTRACT
INTRODUCTION: Despite increased awareness of its multi-dimensional nature, pain remains often underestimated, and its management across different therapeutic areas remains complex. A patient-centred approach is needed to bridge the gap between clinical assessment and individual experience. This project aimed to explore the pain experience across different therapeutic areas through narrative medicine (NM). DIAMOND, the project name, is not an acronym but a symbol meant to shed light on physical and mental pain.
METHODS: DIAMOND involved 19 Italian centres and collected narratives from patients experiencing chronic pain, epilepsy, Gram-positive infections or depression, as well as from their caregivers and treating clinicians. Narratives and socio-demographic data were collected anonymously via a dedicated platform. Narratives were analysed using MAXQDA (VERBI Software, Berlin, Germany), applying NM classifications and content analysis; metaphors used by participants to describe pain were also analysed.
RESULTS: Narratives were collected from 64 patients and 56 caregivers; 20 clinicians contributed 40 parallel charts, all of which were included in the analysis. Pain emerged as a deeply embodied and emotional experience, often described through metaphors of darkness, oppression and distortion. At diagnosis, fear, anxiety and disbelief predominated; however, over time, some participants reported acceptance and resilience. Caregivers described significant emotional, relational and economic burdens, often reporting feelings of helplessness and a sense of responsibility. Clinicians presented more progressive narratives, often focusing on technical aspects of care. The narratives revealed a perceptual gap between patients, caregivers and clinicians, especially regarding the emotional meaning of illness and treatment. The narrative process was seen as beneficial by most participants, supporting inner reflection.
CONCLUSION: This pioneering NM initiative mapped the lived experience of pain across multiple conditions, incorporating the perspectives of patients, caregivers and clinicians. NM proved essential in identifying unmet needs and emotional drivers of care, fostering more empathetic, patient-centred approaches in pain management.
PMID:42532559 | DOI:10.1136/bmjopen-2025-105845
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