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Research studies on patients' illness experience using the Narrative Medicine approach: a systematic review
  1. Chiara Fioretti1,
  2. Ketti Mazzocco1,2,
  3. Silvia Riva2,
  4. Serena Oliveri2,
  5. Marianna Masiero2,
  6. Gabriella Pravettoni1,2
  1. 1Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy
  2. 2Department of Oncology and Hemato-Oncology, University of Milan, Milano, Lombardia, Italy
  1. Correspondence to Dr Chiara Fioretti; chiara.fioretti{at}ieo.it

Abstract

Objective Since its birth about 30 years ago, Narrative Medicine approach has increased in popularity in the medical context as well as in other disciplines. This paper aims to review Narrative Medicine research studies on patients' and their caregivers' illness experience.

Setting and participants MEDLINE, Psycinfo, EBSCO Psychological and Behavioural Science, The Cochrane Library and CINAHL databases were searched to identify all the research studies which focused on the Narrative Medicine approach reported in the title, in the abstract and in the keywords the words ‘Narrative Medicine’ or ‘Narrative-based Medicine’. Primary and secondary outcome measures: number of participants, type of disease, race and age of participants, type of study, dependent variables, intervention methods, assessment.

Results Of the 325 titles screened, we identified 10 research articles fitting the inclusion criteria. Our systematic review showed that research on Narrative Medicine has no common specific methodology: narrative in Medicine is used as an intervention protocol as well as an assessment tool. Patients' characteristics, types of disease and data analysis procedures differ among the screened studies.

Conclusions Narrative Medicine research in medical practice needs to find clear and specific protocols to deepen the impact of narrative on medical practice and on patients' lives.

  • Narrative Medicine
  • patient wellbeing
  • QUALITATIVE RESEARCH
  • narrative intervention
  • systematic review

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Strengths and limitations of this study

  • The manuscript proposes a first review of research studies in medicine conducted with a Narrative Medicine methodology.

  • A systematic analysis was conducted to review scientific evidence in the field starting from the first publication on Narrative Medicine.

  • Owing to the narrative nature of data, it was not possible to implement a meta-analysis of the selected studies.

Introduction

Narrative Medicine (or Narrative-Based Medicine) has developed as a theoretical and operative approach which has been increasingly discussed in recent years. This approach first came into existence about 30 years ago,1 and aims to introduce into daily medical practice the use of narrative as a tool to collect and interpret information on the patient's experience of illness.2 As Trisha Greenhalgh wrote (p. 318): ‘Clinical method is an interpretive act which draws on narrative skills to integrate the overlapping stories told by patients, clinicians and test results’. Nevertheless, the current debate is focused more on the dualism between Narrative Medicine and Evidence-Based Medicine:3 on the one hand medicine needs to be focused on scientifically-rigorous trials and to follow specific protocols, on the other hand the final aim of medical practice is always related to what a patient feels, what they perceive they feel and above all, what they say they feel. What scholars have pointed out is that listening to the patient's story is a tool to enrich not only the knowledge of their physical and psychological condition, but also to offer information with which to formulate the diagnosis.2 ,4–6 Thus, physicians and health staff need in their daily practice would seem to be to adopt a ‘Narrative Evidence-Based Medicine’.7

In this sense, numerous teaching programmes in Narrative Medicine have recently been created (see http://ce.columbia.edu/narrative-medicine or https://www.kcl.ac.uk/prospectus/graduate/medical-humanities) to increase narrative competences of the health staff and to teach them how to use them in their daily work. Some studies have investigated the role of Narrative Medicine in teaching communication skills and increasing personal variables in health staff.8 ,9

Furthermore, experts in the field of Narrative Medicine argue that this approach also plays something of a therapeutic role for patients.10 Thus, adopting a Narrative Medicine procedure in medical practice has positive consequences for the person who experiences a disease. In this case, the meaning of Narrative Medicine seems to be that of accompanying the patient through the listening of her/his story of illness. Many authors such as Bury,11 have suggested that any illness constitutes a disruption, a sort of discontinuance of an ongoing life. Lifespan psychologists and developmental psychologists have stressed the importance of considering illness as a non-normative transition of life which requests the individual to work towards the re-establishment of the normative life balance. When a person faces a chronic illness, the need to reconstruct their life story connecting the past life with the present experience of illness is strong. In this particular context, narrative becomes an opportunity to give voice to the disruption and to provide it within a time framework12 not separated from the other life events which form part of the individual's autobiographical story. There are many examples of the use of narrative to the repair life disruption due to illness. Anatole Broyard, a renowned essayist of the New York Times, who in his pathography reconstructed the story of his illness, famously affirmed that ‘storytelling seems to be a natural reaction to illness. People bleed stories, and I’ve become a blood bank of them’.13

In this domain, adopting a narrative-based approach could be a valid tool whereby patients are helped to re-elaborate their experience. Nevertheless, scientific studies on the effectiveness of Narrative Medicine and the evidence regarding its use in daily practice with patients have not been reviewed so far.

This work aims to provide a systematic review of the research studies based on a Narrative Medicine approach conducted with patients and/or with their caregivers. Thus, it aims to clarify the scientific evidence in the literature concerning the role of Narrative Medicine in patients' experience of illness. Despite the importance that Narrative Medicine approach is acquiring in biomedical and health sciences, just a few studies have tried to underline the scientific value of this approach. Nevertheless, many studies have underlined the effect of narrative intervention in medicine. Zhou et al14 for example, reviewed the randomised controlled trials assessing the effect of expressive writing intervention (EWI)15 on health outcomes in patients with breast cancer. This kind of intervention, asking participants to reflect in a written format about negative past life events, aims to improve emotional expression and elaboration of stressful situations improving psychological and physical health. Comparing 11 articles, they found that EWI has a significant effect on reducing the negative somatic symptoms in a 1 to 3-month follow-up.

At the same time, Frisina et al16 explored the effects of the written Emotional Disclosure paradigm on the health outcomes of people with physical or psychiatric disorders. Meta-analysing nine articles, they found that expressive writing significantly improves health, but is more effective on physical than on psychological health outcomes.

Studies on the effectiveness of narrative methods with patients have not focused solely on the expressive writing paradigm. For instance, Chocinov et al17 implemented a dignity therapy intervention with patients near the end of life. Asking patients to write a novel discussing issues of their life story or those that they would most want remembered, they found in a test–retest design a significant improvement of sense of dignity and a reduction of depression symptoms and sense of suffering.

Furthermore, Houston et al18 assessed the use of storytelling as an intervention to improve blood pressure. In a randomised trial study, they randomly divided patients suffering from hypertension, using in the experimental group DVDs containing patient stories and measuring the blood pressure 3, 6 and 9 months after the intervention. They found that the storytelling intervention produced substantial and significant improvements in blood pressure for patients with baseline uncontrolled hypertension.18

Nevertheless, none of these studies considered their interventions based on narrative as part of the Narrative Medicine approach. Although the procedures were based on the implementation of narrative methods in medicine, authors did not refer to Narrative Medicine in their articles.

Since our aim was to review the role of studies on the Narrative Medicine approach itself, this review took into consideration just those research studies that reported in the title, in the abstract section or in the keywords the phrase Narrative Medicine (or Narrative-Based Medicine). In extracting data and organising the review, we referred to the PRISMA Statement for the reporting of systematic reviews and meta-analyses.19

Materials and methods

To find the most relevant articles for the systematic review, we searched main databases without restriction of language. We limited our search to begin from 1988, the year in which Kleinmann1 published his first work on illness narratives. PubMed, PsycINFO, CINAHL, EBSCO Psychological and Behavioural Science and the Cochrane Library were employed. We did not manually search conference proceeding or dissertations, due to limitations of time and resources. To select the most relevant works, we considered just the studies that met at least one of the following criteria: (1) articles that reported the words ‘Narrative Medicine’ or ‘Narrative-Based Medicine’ in the title, in the abstract and/or in the keywords; (2) research studies, empirical or case study articles referring to the Narrative Medicine approach in the background and/or methodological section. This second criterion was due to the need to separate Narrative Medicine studies from studies using narrative methods that were not considered by authors as works about Narrative Medicine.16 ,14 (3) Research studies focused on patients or caregivers' samples. After an initial literature review, the authors decided to include in the review process both intervention programmes using a Narrative Medicine approach and research studies using it as a tool to explore patient's experience of illness.

Two authors explored the scientific literature and independently extracted the data from every selected article. See table 1 for a summary of the search strategies and sources for the review implementation. As an example, for the PubMed database the used search string was: ((Narrative Medicine[Title/Abstract)) OR Narrative based Medicine(Title/Abstract)) AND (“1988”(Date—Publication): “3000”(Date—Publication)).

Table 1

Summary of search and source for the implementation review

The general information (name of the authors and year of publication), as well as the study characteristics (type of study, dependent variables) and the participants characteristics (sample, disease, race, mean age of participants) were extracted (see table 2). Since some of the selected articles reported interventions using a Narrative Medicine approach, we also extracted the intervention procedures as a variable of the review. When data were missing in the articles, we coded such data as not reported. Since Narrative Medicine is not only a theoretical but also a methodological approach providing clinicians and researchers with an intervention tool in their daily activity with patients, authors assessed and graded the quality of included studies focusing on their methodological design and on the dependent variables investigated.

Table 2

Characteristics of the included studies

Results

Search results

The electronic literature search of articles was conducted in September 2015. Overall, a total of 325 abstracts and titles were analysed, identifying 70 duplicates. Of the 255 titles and abstracts, 228 were excluded due to irrelevancy (n=86) or because they were reviews, theoretical or critical articles, editorials or book reviews (n=142). The remaining 27 full-text articles were examined to identify whether the studies were in line with all the inclusion criteria. Seventeen articles were excluded if they described intervention projects or research studies conducted with professional staff. After having checked the reference lists of the selected full-texts, no additional items were found. Figure 1 illustrates the flow diagram of the present review.

Figure 1

Research studies on patients and caregivers conducted with the Narrative Medicine approach (2005/2015).

Included studies

Ten studies considering the patients illness experience through a Narrative Medicine approach were included in the systematic review. All the studies are presented and described in table 2.

Overall, a total amount of 1021 participants were involved in the considered studies. Of these, 687 were patients and 334 were caregivers. A total of 155 patients participated in a randomised controlled trial as part of control group (n=78) or experimental group without Narrative Medicine intervention (n=77). The majority of the participants were adults, while 50 of them were children.

Considering the type of disease experienced by the participants, three studies involved the participation of patients with cancer; the others explored Pelizaeus-Merzbacher Disease, the experience of being pregnant after liver transplantation, diabetes, mental illness (bipolar disorder), fertility problems and assisted reproduction treatment. Two studies did not report the participants' type of disease, but in one of these two, authors reported that the participants had been contacted in the intensive care unit of a hospital.

Of the 10 studies, four described the individuals' race. In three studies, Caucasian patients participated in the research, in one case the study was conducted with the participation of Asian patients. The mean age was reported in five studies.

Considering the type of study conducted, the results of systematic analysis underline different designs: four exploratory studies, one case study, one randomised trial, one action research, one retrospective observational study and one mixed methods design (prospective and longitudinal).

As mentioned above, the review includes both studies using Narrative Medicine as an intervention and studies using Narrative Medicine as a tool for collecting data.

Of the 10 studies examined, five were intervention studies using Narrative Medicine procedures as an assessment tool. In those cases, the intervention procedures differed greatly among the studies.

Cepeda et al20 performed a randomised controlled trial in adult patients with cancer assessing whether using a Narrative Medicine approach decreases pain intensity and improves the global sense of well-being. They divided the patients into three groups: the first (experimental group) wrote a story three times—once a week—for at least 20 min, about how cancer affected their lives; the second (attention group) completed a questionnaire on pain; the third (control group) attended weekly medical follow-up visits to receive the usual care provided for their therapies. Overall, results showed that the three groups did not differ in pain intensity and well-being in the follow-up assessment. Nevertheless, patients who showed more emotional disclosure in narratives experienced significantly less pain and reported higher well-being scores than patients who wrote a narrative with a lower emotional disclosure.

Greenhalgh et al21 used the Narrative Medicine approach as an intervention to promote learning about diabetes and behavioural change in Asian patients with diabetes. In an initial phase, researchers developed storytelling training in a group of bilingual health advocates (BHAs). They then implemented a research activity in which trained BHAs set up storytelling groups for patients. Even though the study did not formally test the impact of the storytelling group on patients' blood glucose control or other psychological or medical variables, authors argued that after the intervention, patients reported being more confident and more active with respect to their illness.

Massimo and Zarri22 performed an intervention on children suffering from cancer or leukaemia focused on drawing therapy and aimed at reducing their stressful response to hospitalisation and the dramatic changes in their lives. They collected both spontaneous and solicited drawings asking children ‘can you draw me a picture?’ and later asking them to tell a brief story in their drawing. To assess patients' change, they observed drawings and children's behaviours and evaluated differences in the illness representation and in the subject of the drawings which emerged. Results underlined that the attention the children received made them more willing to cooperate, showing less stressful response to the hospitalisation and disease therapies.

Michalak et al23 used theatre to address mental illness stigma in people with bipolar disorder. In a longitudinal study, they involved participants in theatre performance assessing stigma measures once before the intervention and twice after it (immediately and at follow-up 3–4 months later). The follow-up data collection also included an interview to elicit in depth conversation of the participants' perceptions of the impact of the play on their mental stigma. The intervention consisted of six meetings of 4 h each, conducted three to four times per week and a final play with a 30 min question time. The intervention also involved the participation of 84 healthcare providers. Since the aim of this review is to assess research studies and intervention on patients and caregivers, we will not consider the results of this intervention concerning the health staff. Overall, patients with bipolar disorders showed a small quantitative change in mental stigma measures, with a significant decrease in the subscale of feelings of alienation immediately after the performance but not in the follow-up. Conversely, comparing quantitative data with the collected qualitative interviews, results showed that individuals expressed continuous positive effects from the intervention.

Wise et al24 implemented an online narrative education programme for 11 patients with cancer combining three types of intervention to help patients address emotional and existential issues. The intervention was composed of: (1) a telephone interview to elicit the life narrative; (2) a life review education with the final editing of a manuscript; (3) a website giving instructional materials and consultation to help people revising and sharing their story. The intervention effects were assessed through in depth exit interviews. Results showed that patients benefited from the intervention appreciating the opportunity to capture their story and to engage families in its editing.

The other four studies included in the review used Narrative Medicine as part of the research methodology implemented to evaluate different dependent variables.

Cotichelli25 presented qualitative research published in an Italian journal using Narrative Medicine to evaluate the perception of sociorelational quality of the health service in two parents of a family facing a rare paediatric disease. Interviewing the two caregivers and implementing a thematic analysis, the author found the following dimensions: a complex clinical context burdening children and parents, the initial scarcity of helpful assistance and a close friendship network, the limitations of the sociosanitary services in diagnosing rare diseases and caring for children suffering for those pathologies, the individual role of single professionals in providing support to the families, the creation—in a following phase—of a support network, with a special role of the voluntary associations.

Di Gangi et al26 explored the informative role of diaries and guest books in a narrative-based study. From 2009 and 2011 they collected stories spontaneously written by patients and caregivers attending the intensive care unit and implemented a software-based cluster analysis to identify the main themes. Results underlined that stories were frequently written in the form of a letter to patients to encourage them or to show emotional release. Diaries have been also used to provide feedback for the staff.

Donzelli et al27 explored the experience of pregnancy after liver transplantation using a Narrative Medicine tool approach. They conducted interviews and listened to the stories of three women who become pregnant after a liver transplantation, then they transcribed and analysed the narrative plot to extrapolate the emerging themes. Three phases of the experience of illness were identified: (1) the transplant, in which the mothers felt the need to talk about their operation; (2) the pregnancy and the delivery, in which the mothers individuated the discovery of the pregnancy as the most delicate moment of their lives; finally the (3) postpartum, in which the main protagonist of the story of disease is the child and a new prospect for the future.

Esquibel and Bokran28 explored the ways in which chronic pain and opioid medication influence the doctor–patient relationship. To collect narratives they used an in depth interview with a semistructured guide and open-ended questions. Researchers also interviewed patients' physicians, but these results were not considered for the present review. The analysis of collected narratives revealed that patients focused their stories on suffering for chronic pain and on the role of opioid therapy to provide relief. The authors concluded arguing that the use of narrative to explore chronic pain has significant implications for improving the doctor–patient relationship.

Smorti and Smorti29 used a Narrative-based Medicine approach to investigate medical success and couples' psychological problems in assisted reproduction treatment. They administered face-to-face semistructured autobiographical interviews to couples in order to explore the story of the pregnancy in depth, transcribing the interviews verbatim and analysing them via a thematic analysis. Results showed that assisted reproduction treatment leads to a very stressful experience and is narrated by couples through a plot consisting of four phases: doubt, final sentence, victory and monitoring.

A final characteristic considered by the present review is the assessment procedure of the included studies. In this case, the review underlines that five studies assessed the dependent variables conducting narrative analysis of the collected texts. Among them, one study26 implemented a text analysis software; the other authors carried out a thematic, plot or narrative analysis.

Two studies assessed dependent variables using a Likert scale or self-report questionnaires: they conducted a quantitative and statistical analysis of the collected data.

Two studies used observation of patients' behaviour to assess changes in perception of disease and learning about disease management. Finally, Wise et al24 assessed the benefit from an autobiographical storytelling intervention through an in depth interview.

Discussion

The main aim of the present work was that of reviewing the research/intervention studies adopting a Narrative Medicine approach with patients and caregivers. Overall, 10 studies were included in the review. The main results emerged provide evidence that Narrative Medicine is a useful tool to assess the patients' experience of illness and could be implemented in daily medical practice to enrich general clinical information focused on the needs and the critical aspects of patients' lives. This in turn could affect the normal therapeutic pathway.

Furthermore, Narrative Medicine also seems to be a powerful instrument for decreasing pain and increasing well-being related to illness (when patients' narratives show high emotional disclosure), for being more confident, active and cooperative in respect to the illness, for having a less stressful response and decreasing feelings of alienation and finally for sharing illness stories with family members.

Although the debate within the Narrative Medicine approach was started some 30 years ago, a systematic review shows that the majority of scientific literature in the field is still composed of theoretical articles or critical reviews. Furthermore, all the studies included in the review were conducted in the past 10 years. These data stress the need for implementing more studies on the effects and the power of Narrative Medicine on patients' experience of illness.

Particularly, data collection underlines continuity among studies on Narrative Medicine and studies on other theoretical approaches such as Expressive Writing/Emotional Disclosure paradigm and Dignity Therapy in palliative care. All these studies use the storytelling as a tool to help patients to express their feelings, worries and doubts about the disease. It is interesting to note, for instance, the similarity between the study of Michalak et al23 on the use of theatre to address the stigma of mental illness and the study of Roberts et al30 on an intervention programme in adolescents and young adults based on applied drama and theatrical performance. Both studies demonstrated the role of theatre in decreasing mental stigma, even though the first focused on patients with bipolar disorder adult23 and the second on early psychosis in adolescence and emerging adulthood.30 Nevertheless, Roberts et al did not recognise their work as a Narrative Medicine study.

As we mentioned earlier, there are also many similarities among Narrative Medicine and emotional disclosure/expressive writing interventions. The study of Cepeda et al20 for instance, adopted an intervention focused on emotional disclosure through writing once a week for 3 weeks, about doubts, fears and feelings related to the disease. This intervention seems to be very similar to studies reviewed by Smith31 on written emotional expression, although the latter did not refer in his review to a Narrative Medicine approach.

In this sense, it seems very opportune to define the boundaries of the Narrative Medicine approach in order to give it a scientific independence and common protocols to implement. Another important topic that emerged from the review is that studies on Narrative Medicine have used this approach both as an intervention and as a tool to collect narrative data. From our point of view, these two different types of Narrative Medicine studies also imply different research goals.

The intervention studies included in the present review were focused on the use of Narrative Medicine to collect information on the effectiveness of this approach and on the patient benefits derived from it. In this sense, the main aim of the intervention studies on Narrative Medicine seems to be that of assessing the efficacy of the use of the approach on patients: data collected would be evidence to spur health staff into using it in their daily practice.

If instead we look at studies which underline Narrative Medicine as an instrument for collecting narrative data we see that these aim to stress the importance of the approach for providing qualitative information on the patient's experience of illness experience to the health staff. Thus, the data collected would provide practical knowledge to take into account in medical practice. For instance, physicians caring for women who have undergone transplantation should take into consideration that the discovery of the pregnancy is a very delicate moment in their patients' lives and calls for particular attention to, and organisation of, healthcare.27 Greenhalgh and Hurwitz,5 in fact, argued that ‘narratives offer a method for addressing existential qualities such as inner hurt, despair, hope, grief, and moral pain which frequently accompany, and may even constitute, people's illnesses’ (p. 318).

Considering the procedural limitations of reviewed works, the systematic review has shown that studies have engaged the participation of very different samples for size, patients' main age and type of disease. Considering that every disease has its own individual care path and thus is associated with different physical and psychological experiences, depending on patients' characteristics, it seems opportune to take into account the individual disease in the design planning of Narrative Medicine studies with patients. More information on the type of disease and the sample characteristics should be addressed in future studies.

Furthermore, intervention studies overall did not report the integration of control groups in their research design. Except for the randomised trial conducted by Cepeda et al20 all other studies have investigated the role of Narrative Medicine interventions without comparing them with other interventions or control groups. Also, the nature of the intervention greatly varies. Participants in the studies included in the review have performed on telephone autobiographical interviews, manuscript editing, theatre performance, drawing, storytelling groups and 20 min narrative sections.

Another limitation is the high variety of data coding of narratives collected in the research studies using Narrative Medicine as a tool for collecting patients' experiences. In one case26 researches implemented a software of textual analysis assessing the emerged clusters of narratives, in the other studies authors preferred to conduct a thematic, plot or narrative analysis.

To conclude, it seems very suitable to define the boundaries of the Narrative Medicine approach when it is used in research with patients in order to give it scientific independence and common protocols to implement. Thus, intervention programmes should be compliant with the theoretical framework, as well as the analysis of patients' experiences collected through a Narrative Medicine approach. Starting from the copious scientific literature on the topic, researchers should find a common methodology and a shared procedure which will give the opportunity to replicate the study in other contexts and with patients suffering from different diseases.3235

In 2014 in Rome, a committee of international experts in the field participated in a Consensus Conference on recommendations for the implementation of Narrative Medicine in clinical practice.36 The committee declared to define Narrative Medicine as a methodology of clinical intervention based on a specific communicative competence. Narrative has also defined as a fundamental tool to acquire, comprehend and integrate the different points of view of all the participants having a role in the illness experience. In this sense, the main aim of the Narrative Medicine approach would be that of co-construct a shared and personalised care path.36 Authors agree with the cited definition and recognise the important role of considering Narrative Medicine as a tool for clinicians daily practice and communication with their patients. In this sense, Narrative Medicine has to be considered as a part of a new broader culture change stressing the importance of humanisation of the care and a personalised Medicine37 ,38 tailored and constructed on the individual experience,39 story and needs of every patient.

Acknowledgments

Authors are grateful to Dr William Samuel Russel Edu for proofreading the article.

References

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Footnotes

  • Contributors The review was conceived by CF and KM. Data extraction was carried out by SR, MM and SO with support from CF and KM. Reporting of findings was led by CF with support from KM and GP. All authors contributed to manuscript preparation and approved the final version.

  • Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.

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