General Medicine · Medical Literature
Exploring how patients, caregivers and clinicians experience pain across therapeutic areas in Italy: a multi-centre narrative medicine project
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 exper
Clinical relevance
Pain remains chronically underestimated and inadequately managed across diverse therapeutic areas—including chronic pain, epilepsy, Gram-positive infections, and depression—despite growing recognition of its multi-dimensional nature. The DIAMOND project addresses a critical gap between standardized clinical assessment and the lived, subjective experience of pain, which is particularly relevant in Italy's multi-centre care landscape. Clinicians across general medicine and specialist settings should engage with this work because it quantifies the perceptual disconnect between patients, caregivers, and providers, which directly undermines shared decision-making and therapeutic alliance.
Key findings
1. The study enrolled narratives from 64 patients and 56 caregivers across 19 Italian centres spanning four therapeutic areas (chronic pain, epilepsy, Gram-positive infections, depression); 20 clinicians contributed 40 parallel charts, all of which were included in the analysis. 2. Pain was consistently described through metaphorical language centred on themes of darkness, oppression, and distortion, reflecting its deeply embodied and emotional—not purely nociceptive—character across all four disease categories. 3. At the time of diagnosis, fear, anxiety, and disbelief were the predominant emotional responses reported by patients and caregivers; a subset of participants demonstrated emotional evolution toward acceptance and resilience over time. 4. Caregivers reported a triad of significant burdens—emotional, relational, and economic—frequently accompanied by feelings of helplessness and heightened sense of personal responsibility for the patient's suffering. 5. A systematic perceptual gap was identified between patients/caregivers and clinicians: clinicians produced more progessive, technically oriented narratives, while patients and caregivers foregrounded the emotional meaning of illness and treatment. 6. NOTE: No quantitative effect sizes, confidence intervals, p-values, or NNT/NNH were reported in the available abstract; the study employed qualitative content analysis using MAXQDA software and narrative medicine (NM) classifications, precluding extraction of inferential statistics.
Practice implications
Clinicians across general medicine and relevant specialties should consider systematically integrating structured narrative medicine tools—such as parallel charting and guided reflective writing—into the assessment of patients with chronic or complex pain conditions, particularly at key transitions such as diagnosis and treatment initiation, where emotional distress is maximal. Multidisciplinary care teams should explicitly assess and address caregiver burden (emotional, relational, and economic dimensions) as a routine component of chronic pain management rather than treating it as ancillary to the patient encounter. Given the documented perceptual gap between clinician-generated and patient-generated illness narratives, communication training that moves beyond technical care framing toward eliciting the emotional meaning of illness may improve therapeutic alliance, treatment adherence, and patient-reported outcomes in chronic and complex disease contexts.