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Narrative Medicine: theory, clinical practice and education - a scoping review

BMC Health Services Research volume 24, Article number: 1116 (2024) Cite this article

Abstract

Background

The origin of Narrative Medicine dates back to more than 20 years ago at an international level. Narrative Medicine is not an alternative to evidence-based medicine, however these two approaches are integrated. Narrative Medicine is a methodology based on specific communication skills where storytelling is a fundamental tool to acquire, understand and integrate several points of view related to persons involving in the disease and in the healthcare process. Narrative Medicine, henceforth NM, represents a union between disease and illness between the doctor’s clinical knowledge and the patient’s experience. According to Byron Good, “we cannot have direct access to the experience of others’ illness, not even through in-depth investigations: one of the ways in which we can learn more from the experience of others is to listen to the stories of what has happened to other people.” Several studies have been published on NM; however, to the best of our knowledge, no scoping review of the literature has been performed.

Objective

This paper aims to map and synthetize studies on NM according to theory, clinical practice and education/training.

Method

The scoping review was carried out in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) checklist. A search was conducted in PubMed, APA PsycNet and Jstor. Two authors independently assessed the eligibility and methodological quality of the studies and extracted the data. This review refers to the period from 1998 to 2022.

Results

A total of 843 abstracts were identified of which 274 papers were selected based on the title/abstract. A total of 152 papers in full text were evaluated and 76 were included in the review. Papers were classified according to three issues:

  • ✘ Nineteen studies focused on the definition and concept of NM (Theoretical).

  • ✘ Thirty-eight papers focused on the collection of stories, projects and case reports (Clinical practice).

  • ✘ Nineteen papers focused on the implementation of the Narrative Medicine approach in the education and training of medical doctors (Education and training).

Conclusions

This scoping review presents an overview of the state of the art of the Narrative Medicine. It collect studies performed mainly in Italy and in the United States as these are the countries developing the Narrative Medicine approach in three identified areas, theoretical, clinical practice and education and training. This scoping review will help to promote the power of Narrative Medicine in all three areas supporting the development of methods to evaluate and to measure the Narrative Medicine approach using key performance indicators.

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Introduction

Rationale

The role and involvement of patients in healthcare have changed, as has their relationship with healthcare professionals. The patient is no longer a passive subject but part of the healthcare process. Over the years, many approaches to patients’ involvement in healthcare have been developed in the literature, with significant differences in terms of concept and significance.

NM represents a focus on the patient’s needs and the empowerment of their active participation in the healthcare process.

Narrative Medicine enables patients to share their stories with healthcare professionals so that the latter can gain the necessary skills to recognize, interpret and relate to patients [1]. Stories of illness have an important impact on patients and their caregivers, healthcare professionals and organisational systems [2].

Trisha Greenhalgh, an academic in primary healthcare who trained as a General Practitioner, and Brian Hurwitz, an Emeritus Professor of Medicine and The Arts at King’s College (London) [3, 4], affirmed that the core clinical skills in terms of listening, questioning, outlining, collecting, explaining and interpreting can provide a way of navigating among the very different worlds of patients and health professionals. These tasks need to be performed well because they can affect disease outcomes from the patient’s perspective and the scientific aspects of diagnosis and treatment.

In 2013, Rita Charon, a general internist and professor at Columbia University (New York), and Brian Hurwitz promoted “a narrative future for healthcare”, the first global conference on Narrative Based Medicine (NBM). The global conference took place in London in June 2013, where experts in humanities, social sciences and professionals interested in shaping a narrative future for healthcare discussed several topics, such as increasing the visibility of narrative-based concepts and methods; developing strategies that can influence traditional clinical institutions; spreading appreciation for the role of creativity in caring for the sick; articulating the risks of narrative practices in health care; providing a space for Narrative Medicine in the context of other fields, including personalized medicine; and sharing goals for training, research, and clinical care. The conference was the first important opportunity to share different points of view and perspectives at the global level involving several stakeholders with different backgrounds [5].

In the early 2000s, the first Italian experience of Narrative Medicine occurred in Florence with NaMe, a project endorsed by the Local Health Authority aimed at diffusing the culture of patient-centered medicine and integrating strategies to improve doctor‒patient communication in clinical practice [6]. This project was inspired by the articles of Hurwitz and Greenhalgh [3, 4]. In addition, significant input was derived from Arthur Kleinman [7] and Byron Good [8], psychiatrists and anthropologists who studied medicine as a cultural system, as a set of symbolic meanings involving the story of the sick person. Health and illness represent the subjective experience of the person.

Kleinmann [7] defines three dimensions to explain the illness using three different significances:

  • ✘ Disease: “only as an alteration in biological structure or functioning”.

  • ✘ Illness: the subjective experience of suffering and discomfort.

  • ✘ Sickness: the social representation.

Narrative Medicine can be used in several areas such as prevention, diagnosis, treatment, and rehabilitation; adherence to treatment; organization of the care team; awareness of the professional role and the emotional world by health and social workers; prevention of the burnout of professionals and caregivers; promotion and implementation of Patient Care Pathways (PCPs); and prevention of legal disputes and defensive medicine.

The Italian guidelines established by the National Institute of Health in 2015 [9] represent a fundamental step in the process of diffusion and implementation of Narrative Medicine in Italy and currently represents the only document. The guidelines define Narrative Medicine as an intervention methodology based on specific communication skills. Storytelling is a fundamental instrument for acquiring, understanding and integrating the different perspectives of those involved in the disease and in the healthcare process. Storytelling represents a moment of contact between a healthcare professional and the patient’s world. The story told involves people, those who narrate and those who listen. Telling stories is a way of transferring knowledge and experience, connecting, reflecting and feeling emotions.

In the last few years, several studies have been carried out with different objectives and perspectives, but no literature review on Medicine Narrative has been performed. We founded the study of Rui et al. [10] performing a bibliometric analysis of the literature on medical narratives published from 2011 to 2021 showing that the field of narrative medicine is dominated by a few countries. Respect to 736 studies included in the review, 48% (369) are performed in US and 98 papers in Italy.

Objective

The objective of scoping review was to map and synthetize studies on NM according to theory, clinical practice and education/training, three settings where NM was developed.

The research questions formulated: (1) What is Narrative Medicine?; (2) How is Narrative Medicine implemented in clinical practice?; (3) What is the role of Narrative Medicine in education and training for medical doctors?

Methods

The study protocol follows the PRISMA-ScR checklist (PRISMA extension for Scoping Reviews) but it is not registered (Additional file 1).

We included peer-reviewed papers published from 1998 to December 2022 written in Italian or in English. We excluded papers written in other languages. We included articles according to one of these issues: studies on theory of Narrative Medicine, on clinical practice or education/training of Narrative Medicine. We excluded books, case reports, reviews. To identify potentially relevant studies, the following databases were searched from 1998 to December 2022: PubMed, APA PsycNet and Jstor. The search strategy can be founded in Additional file 2. A data charting form was developed by two reviewers to define which variables can be extracted. The reviewers independently charted the data and discussed the results. We grouped the studies by type of application related to the Narrative Medicine and summarized objective, methods and reflections/conclusions. The scoping review maps the evidence on Narrative Medicine according one of the three fields of diffusion and implementation (Fig. 1). Furthermore, the studies classified in “theoretical field “are grouped in subcategories to explain in best way the concepts and permit a clearer and more streamlined reading.

Fig. 1
figure 1

Categories of Narrative Medicine

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Results

Review process

After removing duplicates, 843 abstracts from PubMed, Jstor and APA PsycNet were screened. A total of 274 papers were screened based on the abstracts, of which 122 were excluded. A total of 152 full texts were evaluated, and 76 were included in the review (Fig. 2).

Fig. 2
figure 2

PRISMA Flow-chart

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The studies included were classified into the three fields where the Narrative Medicine is implemented:

  • ✘ Theoretical studies: 19.

  • ✘ Clinical Practice: 38.

  • ✘ Education and training: 19.

The scoping review did not present the results of papers included but the main objectives and the methods used as the aim of the scoping review was to map the studies performed in terms of theory, clinical practice and education/training. We have tried to organize the studies published so far, making it increasingly clear how Narrative Medicine has developed.

Theoretical studies

This section presents the 19 selected theoretical studies grouped into subcategories (Additional file 3).

Narrative Medicine: advantages

In this section, we present seven papers that highlight the benefits of narrative medicine.

Of the seven papers considered, four were performed by Rita Charon emphasizing the value of Narrative Medicine in four different contexts. In the first [11], the study by Goupy et al. evaluated a Narrative Medicine elective course at the Paris-Descartes School of Medicine. In the second [12], Charon rewrote a patient’s family illness to demonstrate how medicine that respects the narrative dimension of illness and care can improve the care of individual patients, their colleagues and effective medical practice. The third paper [13] describes a visit to the Rothko Room at the Tate Modern in London as a pretext to emphasize how for narrative medicine, creativity is at the heart of health care and that the care of the sick is a work of art.

In the fourth [14], Charon provides the elements of narrative theory through a careful reading of the form and content of an excerpt from a medical record. This is part of an audio-recorded interview with a medical student and a reflection on a short section of a modernist novel to show how to determine the significance of patients’ situations.

According to Abettan [15], Narrative Medicine can play a key role in the reform of current medical practice, although to date, there has been little focus on how and why it can deliver results and be cost-effective.

Cenci [16] underlines that the existential objective of the patient is fundamental to know the person’s life project and how they would like to live their future years.

Zaharias [17], whose main sources are Charon and Launer, has published three articles on NM as a valid approach that, if practiced more widely by general practitioners, could significantly benefit both patients and doctors. If the patient’s condition is central, the NM shifts the doctor’s focus from the need to solve the problem to the need to understand. Consequently, the patient‒physician relationship is strengthened, and patients’ needs and concerns are addressed more effectively and with better results.

Narrative Medicine: the role of digital technologies

This section includes 3 papers on the role of digital technologies in Narrative Medicine. Digital narrative medicine is diffusing in care relationship as presents an opportunity for the patient and the clinician. The patient has more time to reflect on his/her needs and communicate in best way with the healthcare professionals. The clinician can access to more information as quantitative and qualitative information and data provided by the patient. These information represent an instrument for the clinician to personalize the care and respond to patient’s unmet needs.

The use of digital technologies, particularly the digital health storymap tool described by Cenci [16], for obtaining a multidisciplinary understanding of the patient’s medical history facilitates communication between the patient and caregiver. According to Charon [18], the relentless specialization and technologization of medicine damages the therapeutic importance of recognizing the context of patients’ lives and witnessing their suffering.

Rosti [19] affirms that e-health technologies will build new bridges and permit professionals to have more time to use narrative techniques with patients.

The increased use of digital technologies could reduce the opportunity for narrative contact but provide a starting point for discussion through the use of electronically transmitted patient pain diaries.

Narrative Medicine: integration with evidence-based medicine

Greenhalgh’s [20] and Rosti’s [19] studies address one of the most significant issues, the integration of Narrative Medicine with Evidence Based Medicine. Narrative Medicine is not an alternative to Evidence Based Medicine, they coexist and can complement each other in clinical practice.

Greenhalgh’s work [20] clearly shows how NM and EBM can be integrated. EBM requires an interpretative paradigm in which the patient experiences the disease in a unique and contextual way and the clinician can draw on all aspects of the evidence and thus arrive at an integrated clinical judgement.

Rosti [19] believes that even “evidence-based” physicians sustain the importance of competence and clinical judgement. Clinicians also need to rely on patients’ narratives to integrate more objective clinical results. Clinical methods are not without their limitations, which Narrative Medicine can help to overcome. Lederman [21] enphatises the importance of social sciences to analyze the stories and to improve the care.

Narrative-based Medicine: insidious

Three papers in this section focus on the possible risks of the Narrative Medicine approach. It is needing a more awareness on role of Narrative Medicine as a robust methodology.

The study by Kalitzus [22] shows how a narrative approach in medicine will be successful only if it has a positive effect on daily clinical practice instead of merely increasing existing problems.

Complex narratives on diseases published in biographies or collected by social scientists are useful only for training and research purposes. NM requires time and effort and cannot be considered the only important issue in medicine. According to Abettan [15], Narrative Medicine can make the treatment more personalised for each patient, but it is not the only way.

Zaharias [17] affirms that Narrative Medicine is often described simplistically as listening to the patient’s story, whereas it is much more common and requires special communication skills. Perhaps for these reasons, and despite its advantages, NM is not as widely practiced as it could be. Narrative skills are an integral part of practice and learning them takes time. As the author also states, “the healing power of storytelling is repeatedly attested to while evidence of effectiveness is scarce”. Lanphier [23] underlines the need to explain the term "narrative medicine" to avoid misunderstandings and to analyze the use of narrative as a tool.

Narrative Medicine: training

Liao et al. [24] presented a study aimed at helping students improve their relationships with patients by listening to them. These results, similar to those described by Charon [25], suggest that Narrative Medicine is worth recommending in academic training. The essay by O’Mahony [26] aims to provoke a debate on how and what the medical humanities should teach. Narratology and narrative medicine are linked to empathy.

Narrative Medicine: clinician-patient communication

Papers included within this category focus on the relationship between the clinician and patient, which is important in the healthcare context.

American healthcare institutions recognize the use of the Narrative Medicine approach to develop quality patient care. As a gastroenterologist at a health centre in Minnesota (US), Rian [27] concluded that the practice of Narrative Medicine should not be kept on the fringes of medicine as a hobby or ancillary treatment for the benefit of the patients but should be considered key to the healthcare process. Improving doctor‒patient communication merits more attention.

According to Rosti [19], NM can be seen as a tool to promote better communication. Although time constraints are often mentioned as an obstacle, the time needed to listen to patients is not excessive, and all healthcare professionals should consider giving patients more freedom from time constraints during consultations by encouraging them to talk about their experiences. The use of NM may also be associated with better diagnosis and treatment of pain.

Zaharias [28] underlines that communication skills are crucial. General practitioners can further develop the strong communication skills they already possess by practicing NM through neutrality, circular questions and hypotheses, and reflective skills.

Narrative Medicine: bioethics in qualitative research

The use of qualitative research in bioethics and narrative approaches to conducting and analysing qualitative interviews are becoming increasingly widespread. As Roest [29] states, this approach enables more “diagnostic thinking”. It is about promoting listening skills and the careful reading of people and healthcare practices, as well as quality criteria for the ethical evaluation of research and training.

Clinical practice

In this classification, we included case studies performed in clinical care. We focused on methods used to guide the patients’ stories or narratives written by healthcare professionals. We analysed how Narrative Medicine has been implemented in clinical healthcare practice.

The studies included (38) were performed in the following countries: Italy (28), USA (4), Australia (1), Canada (1), China (1), Colombia (1), Norway (1), and several European countries (1) (Table 1). The main methods used were semi-structured interviews that guided the patient’s and physician’s narration [30,31,32,33], narrative diaries written by patients [34], and paper parallel charts (an instrument to integrate the patients’ stories in clinical practice) written by clinicians [34,35,36].

Table 1 Clinical practice: studies included
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The studies underlined the usefulness of narrative medicine not only in qualitative research but also in integration with quantitative analysis. Gargiulo et al. [45] highlighted the importance of integrating narrative medicine and evidence-based approaches to improve therapeutic effectiveness and organizational pathways. Cappuccio et al. [36] affirmed that narrative medicine can be effective in supporting clinicians in their relationships with patients and caregivers.

Narrative Medicine is an important instrument for patients, caregivers and healthcare professionals [63]. Suter et al. [60] affirmed that patients’ stories can help other patients with similar experiences. The studies performed by Cercato [39, 40] and Zocher [67] highlighted the role of digital diaries in the care process from the perspective of healthcare professionals and patients. Sansone et al. [55] highlighted that the use of diaries in the intensive care unit is helpful in facilitating communication between healthcare professionals and the family.

Education and training

This section includes studies on the role of Narrative Medicine in the education and training of medical students and healthcare professionals. The studies discuss the experiences, roles and programmes of the Narrative Medicine programme in education and training. Nineteen studies were carried out, 10 of which were in the USA (Table 2). Only two studies were carried out in Europe, 4 in Taiwan, 1 in Canada, 1 in Iran and 1 in Israel. Seven studies focused on the role of narrative medicine for healthcare professionals [68,69,70,71,72,73,74], and 11 were aimed at medical students from different disciplines. All studies underlined the positive role of Narrative Medicine in training. Chou et al. [75] affirmed that the new model of narrative medicine training, “community-based participatory narrative medicine”, which focuses on shared narrative work between healthcare trainees and patients, facilitates the formation of therapeutic patient-clinician relationships but also creates new opportunities to evaluate those relationships. Darayazadeh et al. [70] underlined the effectiveness of Narrative Medicine in improving students’ reflections and empathy with patients. Additionally, Lam et al. [76] highlighted that Narrative Medicine could be a useful tool for improving clinical empathy skills. The studies used different approaches to implement the Narrative Medicine method. Arntfield et al. [77] proposed three tools at different steps of the study (survey, focus group and open-ended questions). Chou et al. [75] asked participants to write a personal narrative. DasGupta and Charon [78] used a reflective writing exercise to analyse personal experiences of illness.

Table 2 Education and training: studies included
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Discussion

In this scoping review we identified 76 studies addressing dissemination and implementation of Narrative Medicine across three settings between 1998 and 2022. The studies performed by Hurwitz [3] and Greenhalgh [4] provide a path towards the Narrative Medicine affirm that sickness episodes are important milestones in patient life stories. Not only we live through storytelling, but often, with our doctor or nurse as a witness, we get sick, we improve, we get worse, we are stable and finally we also die through the story. affirms that the stories are often evocative and memorable. They are image rich, action packed and laden with emotions. Most people recall them better than they recall lists, graphs or numbers. Stories can convey important elements of nuance, including mood, tone and urgency. We learn through stories because the story form allows our existing schemas to be modified in the light of emerging experiential knowledge. The stories can capture tacit knowledge: in healthcare organizations they can bridge the gap between explicit, codified and formal knowledge (job descriptions, guidelines and protocols) and informal, not codified knowledge (knowing how to get things done in a particular organization or team, sometimes referred to as knowing the ropes). The “story” is the focal point in the studies related to the clinical practice as these discuss about the patient’s experience, illness story thought tools as questionnaires, narrative diary, chart parallels. The patient is an expert patient able to interact with the healthcare professionals, he/she had not a passive role; the patient is part of the process with the other involved stakeholders. Also, the Italian guidelines on Narrative Medicine [9] considers the storytelling as a fundamental instrument to acquire, understand and integrate several points of view related to persons involving in the disease and in the healthcare process. Storytelling represents the interaction between a healthcare professional and the patient’s world. According to this perspective, it is useful to educate in Narrative Medicine the healthcare professionals from the University to provide instruments to communicate and interact with their patients. Charon [11] emphasizes the role of training in narrative skills as an important tool permitting to physicians and medical students to improve their care. Charon [24] underlines that narrative training permits to explore the clinician’s attention to patients and to establish a relationship with patients, colleagues, and the self. The study of Liao [22] underlines that Narrative Medicine is worth recommending for healthcare education as resource for interdisciplinary collaboration among students from different discipline.

John Launer in The Art of Medicine. Narrative medicine, narrative practice, and the creation of meaning (2023) [87] affirm that Narrative Medicine could be complemented by the skills and pedagogy of narrative practice. In addition to the creation and study of words on the page, learners could bring their spoken accounts of their experiences at work and interview each other using narrative practice techniques. He also affirms that narrative practice and narrative medicine could both do more to build alliances with advocacy groups.

We have performed a picture of Narrative Medicine from its origin to today hoping that it will help to promote the power of Narrative Medicine in all three areas becoming increasingly integrated.

Strengths and limitations

The scoping review does not present the results of studies included but objectives, methodology and conclusions/suggestions as it aims to map the evidence related to the Narrative Medicine using a classification defined for the review. This classification had permit to make even clearer the “world” of Narrative Medicine and present a mapping.

English- and Italian-language articles were included because, as seen from the preceding pages, most of the studies were carried out in the United States and Italy.

This could be a limitation, as we may have excluded papers written in other languages. However, the United States and Italy are the countries where Narrative Medicine has developed the most.

Conclusions

The scoping review presents an overview of the literature considering three settings in which Narrative Medicine has emerged from its origins until today highlighting evidence in terms of theory, clinical practice, and education. Currently, a methodology to “measure” Narrative Medicine with indicators, a method assessing the effectiveness and promoting a greater diffusion of Narrative Medicine using objective and measurable indicators, is not available. Furthermore, the literature analysis doesn’t show an integration across three settings. We hope that the review will be a first step towards future projects in which it will be possible to measure Narrative Medicine according to an integrated approach between clinical practice and education/training.

Availability of data and materials

Availability of data and materials: All data generated or analysed during this study are included in this published article.

Abbreviations

NM:

Narrative Medicine

NBM:

Narrative-Based Medicine

EBM:

Evidence-Based Medicine

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Authors and Affiliations

  1. Institute of Management, Scuola Superiore Sant’Anna Pisa, Piazza Martiri della Libertà 33, Pisa, 56127, Italy

    Ilaria Palla & Giuseppe Turchetti

  2. SIMeN, Società Italiana Medicina Narrativa, Arezzo, Italy

    Stefania Polvani

  3. Azienda USL Toscana Sud Est, Arezzo, Italy

    Stefania Polvani

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  1. Ilaria Palla
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I.P. and S.P. carried out the scoping review, conceived the study, data collection process and drafted the manuscript. G.T. participated in the coordination of the study. All authors read, reviewed and approved the final manuscript.

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Palla, I., Turchetti, G. & Polvani, S. Narrative Medicine: theory, clinical practice and education - a scoping review. BMC Health Serv Res 24, 1116 (2024). https://doi.org/10.1186/s12913-024-11530-x

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