Abstract
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.
Keywords: Medicine, Chronic Pain, Cancer pain, Epilepsy, INFECTIOUS DISEASES
STRENGTHS AND LIMITATIONS.
This study used consolidated narrative medicine tools (illness plots and parallel charts), previously applied in other narrative medicine projects—including observational clinical studies—to collect in-depth narratives from patients, caregivers and clinicians.
The multi-centre design, involving 19 Italian centres across different therapeutic areas, increased the diversity of clinical settings and experiences captured.
The use of an anonymous web-based platform facilitated participation from geographically dispersed respondents but may have favoured individuals with higher digital literacy.
Qualitative analysis followed a structured coding process with team-based calibration and use of Standards for Reporting Qualitative Research reporting criteria, enhancing transparency and methodological rigour.
As a narrative medicine project, a formal statistical sample size was not calculated; the number of narratives was defined pragmatically based on feasibility and centre participation, which limits the possibility of stratified analyses (eg, by sex, gender or specific diagnoses).
Introduction
Pain is a multi-dimensional sensory and emotional experience deeply influenced by mental, social and contextual factors that modulate perception and therapeutic response.1 2
Although pain manifests differently across diseases, some features are common across conditions. In adult patients, chronic pain is often experienced as a pervasive presence that disrupts self-image, functionality and social relationships. Patients strive to preserve meaning in the face of ongoing suffering and frequently feel misunderstood by clinicians.3 In narratives, acceptance and support are identified as critical to maintain dignity and emotional stability.4 In children with chronic pain, the experience often emerges through behaviour and family dynamics. Parents report helplessness, emotional strain and shifts in caregiver identity, as pain reshapes daily routines and future expectations.5 6 In epilepsy, pain extends beyond seizures to include a broader mental burden,7 8 with patients reporting disrupted daily activities, stigma, strained relationships and a perceived loss of autonomy.9–11 Chronic pain may result from seizure-related injuries or comorbidities and be exacerbated by distress linked to the unpredictability of epileptic episodes. Survivors of Gram-positive infections describe pain as physical debilitation and loss of function, often linked to intravenous treatments and hospitalisation, with functional limitations persisting long after clinical recovery.12–14 In depression, pain is often intensified, with patients reporting heightened sensitivity frequently mediated by anxiety.15 It is described as a somatic expression of emotional suffering, and loneliness emerges as a central theme, with pain reinforcing social withdrawal and isolation.16
A contextualised, patient-centred approach is essential to bridge the subjective experience of pain with clinical management. The WHO has recognised narratives as valuable for exploring illness experience in real-world settings, complementing patient-reported outcomes and clinical data.17 18 Narrative medicine (NM), which centres on illness narratives,19 seeks to integrate the biomedical understanding of disease with the individual (illness) and socio-cultural (sickness) dimensions of health.20 NM incorporates the perspectives of all actors involved in the care process, thereby informing feasible and patient-tailored interventions.21
The “DIAMOND: The Facets of the Italian Healthcare Landscape through Narrative Medicine” project explored experiences of pain across different patient populations—those with chronic pain, epilepsy, Gram-positive infections and depression—selected for their clinical relevance and the substantial impact of pain on daily life, including narratives from patients, caregivers and treating clinicians. To the best of our knowledge, this is the first NM project on pain conducted across multiple therapeutic areas.
Methods
The project was conducted between July and November 2024 across 19 Italian centres (online supplemental file 1) specialised in the selected therapeutic areas. Treating clinicians from these centres participated in a webinar organised by Istituto Studi Direzionali (ISTUD), Healthcare Area, to be trained in NM and discussed the project aims and investigation tools. Afterwards, they were invited to encourage patients and their caregivers to participate in the project by accessing the webpage https://www.medicinanarrativa.eu/progetti/DIAMOND. Participation, however, remained entirely voluntary.
The only inclusion criterion for patients was a diagnosis in one of the selected therapeutic areas, regardless of follow-up duration; caregivers had to be providing care for a child or adult with chronic pain or for an adult in the other therapeutic areas. Proficiency in Italian and basic digital literacy were mandatory, and patients who lacked these skills could receive assistance from their caregivers.
Narrative and data collection
The target number of narratives was determined pragmatically, based on feasibility and the number of participating centres, to capture diverse experiences across roles and therapeutic areas. Written narratives were collected anonymously via the Alchemer platform (Alchemer LLC, Louisville, CO, USA), accessible on the project webpage without entering sensitive data. Participants were asked to complete a socio-demographic survey and write their narrative using an illness plot (patients or caregivers)22 or a parallel chart (clinicians).23 These two NM tools (online supplemental file 2) consisted of temporally ordered open prompts conceived as narrative stimuli rather than mandatory questions. The patients described in parallel charts could not include patients participating in the project. Participants were encouraged to write freely, in their own words and with no constraints on length or style.
Metaphors and images are widely used to explore the quality and nature of pain experience in NM and qualitative pain research,24 25 so participants were also invited to describe pain using a prompt that elicited metaphors or imagery. Patients were asked, “An image to define your pain…”. No guided imagery techniques were used; clinicians described their patients’ pain using an image or metaphor, and caregivers provided image-based or metaphor-based descriptions of their relative’s pain as proxies for the patient.
These tools focused on exploring the personal, emotional and caring experiences of pain from symptom onset through the care pathway, were developed by two ISTUD researchers with different backgrounds and then reviewed by the steering committee to mitigate potential bias.
Ethical considerations
The project was conducted in accordance with the Declaration of Helsinki and received a waiver of formal ethical review from the Local Ethics Committee of the IRCCS Oasi Maria SS Hospital (CEL-IRCCS OASI/22-07-2024/PA02). Participants provided web-based informed consent prior to accessing the online survey and narrative collection, after being fully briefed on the project’s objectives and the procedures for handling personal data, in compliance with Italian26 and European Union law.27 All web-based consent forms explicitly included consent for the publication of anonymised narratives.
Narrative and data analysis
Participant socio-demographic data were analysed using descriptive statistics. Open interpretive coding was used in the qualitative analysis of narratives to identify and categorise main themes and content. Narratives were imported into MAXQDA (VERBI Software, Berlin, Germany), a qualitative data analysis software,28 for systematic coding and content analysis.29 To ensure coding consistency across the research team, 10 narratives per group were collectively coded by all researchers. This process resolved discrepancies in interpretation and established unified coding criteria. Remaining narratives were independently coded by individual researchers, with regular meetings held to resolve ambiguities and peer debriefings conducted to minimise interpretation bias.
Narratives were also retrospectively classified in accordance with Launer and Robinson’s framework,30 which distinguishes between ‘progressive’ narratives, in which coping strategies allow a future perspective; ‘stuck’ narratives, in which the lack of coping strategies determines a lack of future perspective; and ‘regressive’ narratives, in which the lack of coping strategies leads to a worse future compared with the initial situation.
The steering committee collaboratively reviewed results to interpret identified themes. The research team followed the Standard for Reporting Qualitative Research (SRQR) guidelines31 to ensure consistent methodology and reporting.
Patient and public involvement
Researchers did not engage patients and caregivers in (a) developing the research design and tools, (b) interpreting and discussing the results and (c) contributing to the writing or editing of this document.
Results
Narratives were collected from 64 patients, 56 caregivers and 20 clinicians. Each clinician contributed 2 parallel charts (the physician’s narrative on patient), yielding 40 parallel charts. In total, 160 narratives were included in the analysis. Regarding chronic pain, participants reported a range of conditions, including oncological pain (eg, breast cancer, haematological malignancies and bone metastases), pain associated with Gram-positive infections (eg, endocarditis, infections of prosthetic material and spondylodiscitis), epilepsy-related pain (eg, focal and generalised epilepsies) and pain in the context of depressive disorders. Table 1 summarises the socio-demographic data and distribution of participants (patients, caregivers and clinicians) across therapeutic areas.
Table 1. Participants’ socio-demographic data and distribution across therapeutic areas from 160 narratives.
| Patients* (n=64) | Caregivers (n=56) | Clinicians (n=40) | |
|---|---|---|---|
| Sex | |||
| Female | 35 (54%) | 38 (67%) | 24 (60%) |
| Male | 29 (46%) | 18 (33%) | 16 (40%) |
| Region of residence | |||
| Northern Italy | 34 (53%) | 24 (42%) | 16 (40%) |
| Central Italy | 14 (22%) | 12 (21%) | 10 (25%) |
| Southern Italy | 16 (25%) | 20 (38%) | 14 (35%) |
| Age (min–max), years | 14–92 | 18–80 | 25-69 |
| Age classes, years | 18–24 (12%) 50–54 (12%) 55–59 (12%) 60–64 (12%) |
45–49 (15%) | 30–34 (20%) 50–54 (20%) |
| Educational level | |||
| Elementary school | 2 (3%) | 1 (2%) | – |
| Middle school | 9 (13%) | 5 (10%) | – |
| High school | 33 (52%) | 35 (60%) | – |
| University | 20 (29%) | 15 (28%) | – |
| Employment status | |||
| Working or studying | 39 (62%) | 42 (74%) | – |
| Not working | 23 (38%) | 7 (13%) | – |
| n/a | 2 (3%) | 7 (13%) | – |
| Civil status | |||
| Cohabiting/married | 33 (52%) | 36 (64%) | – |
| Single/separated/widowed | 67 (48%) | 20 (36%) | – |
| Therapeutic area | |||
| Chronic pain | 16 (25%) | 13 (23%) | 12 (30%) |
| Epilepsy | 12 (19%) | 14 (25%) | 10 (25%) |
| Gram-positive infections | 9 (14%) | 7 (13%) | 8 (20%) |
| Depression | 27 (42%) | 13 (23%) | 7 (18%) |
| Chronic pain (paediatric) | 0 (0%) | 9 (16%) | 3 (7%) |
| Type of healthcare facility | |||
| Hospital | – | – | 5 (13%) |
| University hospital | – | – | 7 (18%) |
| Territorial healthcare facility | – | – | 16 (40%) |
| IRCCS | – | – | 11 (28%) |
| Other | – | – | 1 (1%) |
Data are expressed as N (%) or as age (min–max); age classes indicate the most frequent 5-year categories for each group.
No socio-demographic data were collected for pediatric patients with chronic pain.
IRCCS, Scientific Institute for Research, Hospitalization and Healthcare.
Results are organised around the following: (a) condition-related and caregiving-related burden, (b) pain experience and metaphors, (c) emotional burden from diagnosis onward, (d) changes in bodily perception, (e) impact on relationships and (f) perceptions of treatments and care relationships. Supporting quotes are included throughout the text to illustrate these themes.
Condition-related and caregiving-related burden across therapeutic areas
In the survey, 30% of patients reported a considerable impact of their condition on relationships and professional life. 13% used part or all of their vacation days for medical appointments or procedures or adjusted their employment conditions; 4% stopped working entirely; and 54% reported a substantial reduction in income. Access to care often required travel: 42% travelled within their region, 4% travelled outside and 72% relied on private transportation.
Caregivers also reported facing major challenges. 74% provided care alongside other occupations; 79% could not quantify the time spent. 26% reported a moderate-to-high impact on daily life, and 58%, mainly women, experienced substantial burden. Tasks included care management and companionship (51%). Due to these responsibilities, 32% altered their employment status: 33% stopped working, others lost an average of 50 workdays per year (range, 1–350) and many reported financial strains.
Pain experience in metaphors and narrative arcs
A graphical representation of the most frequently used metaphors by patients, illustrated through word clouds, is available in online supplemental file 3.
Among patients with depression, 33% used metaphors of darkness and obscurity, and 19% conveyed the paralysing weight of the condition (“Trapped inside a freezing iron cube, crushing me, pressing down on me”). Others expressed a lack of future perspective (“a field of corpses after a war”). Patients with epilepsy often referred to weight and oppression (42%; “an anchor that drags me down”) or to sudden chaos and loss of control (“a tornado”). Patients with Gram-positive infections predominantly used imagery of darkness and the unknown (43%), oppression or imprisonment (33%) and the invisibility or incomprehensibility of the illness (“a fire hidden beneath the ashes”). In chronic pain, 44% of metaphors referred to nullification (“the suspension of time”) and 56% to malignancy. According to their caregivers, paediatric patients primarily expressed hopelessness (“a tree that continues to be fertilised but never blooms”).
Caregivers mirrored many of these themes. Those caring for patients with depression used metaphors of darkness and uncertainty; caregivers of patients with epilepsy evoked oppressive imagery (“a cursed ghost”), and those caring for patients with Gram-positive infections referred to darkness, imprisonment and malignancy. Caregivers for patients with chronic pain emphasised the disruptive and malignant nature of the condition (“a hidden monster in a hole”), whereas paediatric caregivers focused on prolonged waiting and hope. Although using a more detached and technical language, clinicians used imagery similar to that of patients, highlighting the isolation experienced during illness.
According to Launer and Robinson’s narrative classification (figure 1), ‘progressive’ narratives were predominant among both patients and clinicians (63%). No ‘regressive’ narratives were observed among clinicians, whereas these were most frequent among caregivers (38%) and present in 18% of patients. ‘Stuck’ narratives were commonly found among clinicians (37%) and to a lesser extent among caregivers (17%).
Figure 1. Classification of participant narratives following Launer and Robinson’s framework.
Emotional burden throughout the care pathway
At condition onset, negative emotions such as fear, confusion, anxiety or sadness were reported by 85% of patients with depression, 74% of paediatric patients, 72% with Gram-positive infections, 68% with chronic pain and 66% with epilepsy (“Lying there with wide-open eyes, staring at the ceiling and crying”). Nonetheless, some patients with depression reported having experienced depressive or anxious symptoms for as long as they could remember. At diagnosis, the most frequently reported emotions across all conditions were surprise (32%; “It felt like the world was collapsing on top of me”), fear about the future (28%), disbelief (18%) and, in some cases, relief (12%) for finally understanding the cause (“Now I get my diagnosis”). Progressive acceptance (10%) and hope for treatment efficacy were also described.
Among caregivers, initial reactions often included a sense of collapse or annihilation (“It felt like the world collapsed on me”). Diagnosis was frequently associated with powerlessness (55%) and an increased sense of responsibility (38%), reflecting both a perceived obligation and an emotional need to support their loved one.
At the time of reporting, 15%–20% of patients across therapeutic areas reported a sense of acceptance and resilience, whereas 25%–40% expressed hope and gratitude. Nevertheless, in the areas of depression, chronic pain and epilepsy, negative emotions such as anger, fear and uncertainty remained prevalent.
Caregivers commonly reported resilience, determination and hope (40%), as well as physical and emotional exhaustion (20%). Uncertainty regarding long-term care planning was a persistent concern.
Clinicians reported being attentive to patients’ emotional needs and generally expressed satisfaction with both their clinical decisions and the quality of care provided; professional frustration was present but moderate.
Changes in patient bodily perceptions
Narratives revealed a change in patients’ bodily perception across the therapeutic areas (figure 2).
Figure 2. Changes in patient bodily perception across the therapeutic areas (n=64).
At the beginning of the care pathway, the body was perceived as foreign or diseased (range 10%–25%: “My body was ill—so ill that I no longer had control over it”), as weak (range, 20%–40%: “My body felt weak, tired, as if it were fighting something invisible and powerful”) or as painful (range, 10%–25%: “My body was rotten. […] Waking up was terrible, almost physically painful”).
At the current stage of the care pathway, patients reported an improved bodily perception: a greater proportion described their bodies as strong (range, 15%–20%: “My body is stronger now, but it bears the marks of that battle”) or unproblematic (range, 15%–20%). Some patients expressed an acceptance of their condition (range, 20%–30%: “My body is no longer the same as before, but I’ve learnt to respect it more and take better care of it”). However, a proportion of patients still reported persistent, unrelieved pain (5%–10%).
Illness and pain experience in family and social relationships
In patient narratives, family support emerged as a critical source of relief (70%) across therapeutic areas, offering both practical assistance and emotional closeness. However, 27% of patients reported experiencing conflict or misunderstanding within the family, often associated with emotional isolation (“With those closest to me, anxiety reaches its peak”). Reports of social isolation were particularly frequent in depression (41%) and epilepsy (50%), whereas adult and paediatric chronic pain patients more commonly described receiving support from others (30% and 40%, respectively).
Retrospective narratives from patients with epilepsy, Gram-positive infections and depression rarely mentioned solidarity, with several narratives describing relational strain (“I was angry with others”). Others, especially those with epilepsy (25%), emphasised efforts to maintain normalcy (“I acted like any other girl”) or avoid burdening others (“The illness was mine alone”). Across conditions, many patients reported changes in their social behaviour, often becoming more selective or emotionally reserved. This trend was particularly evident in depression (25%) and paediatric chronic pain. Some patients described increased openness, whereas others reported a deepening of social withdrawal. Therapeutic area-specific trends revealed the greatest increase in socialisation among patients with depression (+30%) and the highest incidence of withdrawal among patients with chronic pain (+30%), suggesting that the type and progression of disease significantly influence interpersonal dynamics.
Perception of treatments and care relationship
Narratives revealed a generally positive shift in the perception of treatment and care relationships across therapeutic areas (figures 3 and 4).
Figure 3. Changes in patients’ perception of treatments across the therapeutic areas (n=64).
Figure 4. Changes in patients’ perception of healthcare professionals across the different therapeutic areas (n=64).
Most patients described their current therapies as effective (45%–70%), although some reported having discontinued or reduced treatment (10%–40%; “I have stopped treatments. If necessary, I will resume them, but I want to try without them”). A minority perceived treatments as burdensome or difficult to tolerate (5%–15%; “Medication-based treatments further numb me”), whereas 5%–10% described using non-pharmacological support, such as psychotherapy (“Today I continue psychotherapy every fortnight, and it helps me”).
Caregivers often acknowledged treatment effectiveness but emphasised its physical and emotional toll. Experimental therapies were mentioned particularly in epilepsy and depression, with mixed outcomes. In chronic pain, 30% perceived treatments as ineffective, although 25% recognised their efficacy despite significant demands. In depression, 25% reported frustration with ineffective treatments, and 20% reported challenges in accessing appropriate care. In Gram-positive infections, perceptions were more balanced: 25% found treatments burdensome, 20% found them ineffective and 25% found them demanding. In epilepsy, experimental therapies were frequently mentioned (20%), though 30% reported poor efficacy. Overall, 30% of caregivers described treatment-related stress and burden, and 15% highlighted barriers to service access.
Patients and caregivers often experienced early treatment phases as frustrating, whereas clinicians emphasised the need for therapeutic adjustments before achieving positive outcomes. Clinicians acknowledged treatment complexity, often describing it in technical terms, whereas patients and caregivers focused on the emotional and physical burden.
Current care relationships were generally evaluated positively by patients, with 15%–30% highlighting professional competence and supportiveness (“Doctors are there every day, calmly and competently, managing to reassure me”) and 20%–35% emphasising empathy (“Current doctors have been my biggest support”). However, some patients (5%–30%) expressed dissatisfaction or perceived emotional distance (“Current doctors are always distant”), particularly among those with epilepsy.
Narrative experience
The narrative experience was predominantly perceived as positive by patients, with 40% reporting emotional release and 30% identifying both personal and social utility (“Writing about my experience was liberating and thought-provoking”). However, 25% described emotional distress due to reliving painful moments (“Writing about my experience was devastating”), and 5% expressed neutrality or disinterest. Among caregivers, 64% viewed the experience positively, whereas 24% described it as painful and 11% as difficult. Similarly, 72% of clinicians considered writing beneficial for reflection and reinforcing professional identity, although 28% found it emotionally demanding.
Discussion
The project explored the multi-dimensional experience of pain across different therapeutic areas through NM, showing that pain is not only physical but also emotional, relational and existential. Integrating narratives from patients, caregivers and clinicians offered an innovative triangulated perspective on how pain is lived, interpreted and managed in real-world settings, underscoring the importance of NM in recognising and giving meaning to individual and collective care narratives.32 33
Illness exerted a profound impact on the personal, professional and social lives of both patients and caregivers. Beyond biomedical aspects, participants described emotional distress, social isolation and disruptions in identity and family dynamics. Specifically, caregivers reported substantial burdens, including financial strain, altered employment status and physical and mental exhaustion, highlighting the hidden costs of chronic conditions34 that extend well beyond the clinical setting and often fall disproportionately on women.
Classifying narratives using Launer and Robinson’s framework30 highlighted disparities across respondent groups. ‘Progressive’ narratives, marked by coping and future orientation, were predominant among patients and clinicians, especially in depression and chronic pain, whereas ‘stuck’ narratives were frequent in epilepsy, and ‘regressive’ narratives were most common among caregivers and absent among clinicians. This discrepancy suggests a clinician optimism bias, with greater emphasis on biomedical recovery and less attention to ongoing emotional or existential distress, which may risk minimising subjective suffering and undermining trust, communication and adherence.
Diagnosis was portrayed as a moment of emotional rupture across all conditions. Although a few individuals experienced relief in finally obtaining a name and an explanation for their symptoms, most described a sense of existential destabilisation that persists throughout the care pathway. Notably, narratives suggest a distinction worth considering between physical and mental pain: the former is often linked to the onset of a specific event, whereas the latter is associated with something experienced as part of oneself and endured over a long period. Over time, some participants reported gradual emotional adjustment and acceptance. Nonetheless, persistent emotional fatigue and uncertainty were commonly expressed, particularly in depression and epilepsy. Meanwhile, caregivers often felt torn between determination and emotional depletion. In contrast, clinicians tended to describe emotional burden more abstractly, framed in terms of professional frustration or healthcare system challenges rather than in personal distress.
These findings suggest that diagnosis should not be viewed solely as a biomedical event but also as an emotional and mental fault line requiring structured support for both patients and caregivers: active listening to illness narratives is extremely useful for finding the right words and gestures for communicating the diagnosis.
Metaphoric language provided a unique window into the subjective experience of illness.16 24 25 35 Across groups, metaphors revealed how individuals internalise and frame their suffering, expressing it through imagery. Patients with depression evoked darkness, and those with epilepsy spoke of uncontrollable forces. Gram-positive infections were likened to fire, imprisonment or obscurity, emphasising invisible danger and loss of control. Chronic pain metaphors centred on nullification and malignancy, with paediatric patients describing hopelessness. Clinicians should be prepared to welcome metaphors during the clinical encounter to better understand how patients live with the condition. Caregivers largely mirrored patient metaphors, reflecting their emotional proximity to the illness. Clinicians, while occasionally echoing these themes, typically used more detached or technical metaphors, downplaying the emotional gravity conveyed in patient and caregiver metaphors. This divergence reinforces the idea that metaphors should not be dismissed as rhetorical devices but embraced as meaningful indicators of emotional distress and inner reality. Greater clinician sensitivity to metaphorical expression could enhance emotional attunement and therapeutic alliance.36
Narratives also revealed evolving perceptions of the body. In the early stages, many patients described their bodies as foreign, diseased or fragmented. These perceptions often involved visceral language, evoking feelings of decay or loss of control. Over time, some patients described a shift toward strength, resilience or acceptance, reflecting coping beyond the purely physical. However, a notable minority continued to perceive their bodies as damaged, suggesting that physical recovery does not always align with mental, existential and emotional integration. These patterns highlight the importance of reconstructing a new bodily identity as part of long-term recovery. Clinicians should listen to how patients narrate their relationship with their body, as it may influence adherence, self-care and emotional well-being.
Pain and illness significantly reshaped social lives. Patients with depression and epilepsy frequently reported withdrawal, whereas those with chronic pain described more supportive networks. Social selectivity emerged: some participants became more emotionally open, whereas others isolated themselves further. Caregivers also reported feelings of loneliness and social invisibility, often exacerbated by the time-intensive nature of caregiving. Interestingly, patients with depression reported increased social engagement over time, whereas patients with chronic pain showed higher rates of withdrawal, potentially due to treatment fatigue or fear of stigma. These findings suggest that social support should be actively assessed and nurtured. Illness and pain disrupt social norms and relational roles, and interventions must address both the patient’s and caregiver’s evolving support needs.
Although perceptions of treatment generally improved over time, early phases were often marked by frustration and disappointment, especially in epilepsy and depression. Some patients reported discontinuing therapies due to side effects or a desire to regain autonomy, whereas others emphasised the emotional toll of adhering to long-term, complex regimens. Clinicians predominantly emphasised the technical or strategic aspects of therapy, focusing less on the patient’s emotional experience of treatment. Meanwhile, caregivers described both appreciation for therapeutic efficacy and significant mental burden, particularly when experimental therapies were involved. These dynamics highlight the dual nature of therapeutic success: although biomedical outcomes are essential, the quality of the therapeutic relationship is equally critical.
Importantly, most participants perceived the narrative process itself as beneficial. Patients and caregivers described it as reflective and empowering, providing space for emotional release and meaning-making. Even when painful, writing allowed participants to contextualise their experience and feel heard. Clinicians also found value in writing, citing increased self-awareness, professional reflection and gratitude towards and from patients, although some found it emotionally demanding, since narrative competencies are rarely cultivated in the evidence-based medicine context.37 These responses suggest that NM serves not only as a research method but as a therapeutic intervention, offering a space for personal integration and relational healing.38 39 Embedding narrative practices in routine care strengthens patient-clinician connections and provides new pathways for assessing suffering, resilience and coping.
The project has some limitations. First, patients were included regardless of specific clinical characteristics, and the number of narratives was defined pragmatically rather than through a formal statistical sample size calculation. Second, patients were not stratified according to sex or age, and paediatric pain was represented only indirectly through caregiver narratives, without child-specific tools. Third, therapeutic areas were defined according to the primary clinical setting, so narratives of depression and chronic pain were analysed separately; this preserves contextual specificity but may under-represent the continuity between physical and emotional pain experiences. Finally, patients and members of the public were not involved in the design or conduct of this NM project, which may have limited opportunities to co-define research questions and outcome dimensions.
Conclusion
Pain is never just physical—it is embedded in stories of disruption, adaptation and relational strain. This project provides insights into the emotional, embodied and social dimensions of pain and highlights the perceptual gaps between patients, caregivers and clinicians, underscoring the value of narrative-informed approaches for patient-centred care.
Supplementary material
Acknowledgements
The authors wish to thank all participants who take part in the narrative collection. The authors also thank ISTUD, Healthcare Area researchers for their valuable contribution throughout the study and Alessandra Fiorencis for providing medical writing support.
Footnotes
Funding: Angelini Pharma unconditionally supported ISTUD Srl for the implementation of the project.
Prepublication history and additional supplemental material for this paper are available online. To view these files, please visit the journal online (https://doi.org/10.1136/bmjopen-2025-105845)
Provenance and peer review: Not commissioned; externally peer reviewed.
Patient consent for publication: Not applicable.
Ethics approval: This study involves human participants but the Ethics Committee of Local Ethics Commitee IRCCS Oasi Maria SS issued a formal waiver for this project (ID number: CEL-IRCCS OASI/22-07-2024/PA02). (Original document can be found in supplementary files). Participants gave informed consent to participate in the study before taking part.
Patient and public involvement: Patients and/or the public were not involved in the design, conduct, reporting, or dissemination plans of this research.
Data availability free text: All datasets used and analysed during the research are available in Italian from the corresponding author, upon reasonable request.
Data availability statement
Data sharing not applicable as no datasets generated and/or analysed for this study.
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