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.
Research studies on patients and caregivers conducted with the Narrative Medicine approach (2005/2015).
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.
How should doctors present case reports? Medical tradition, our mentors and our textbooks teach a standard format that starts with identifying information, followed by the chief complaint, history of present illness (HPI), past history, medications, social and family history, and review of systems, with slight variations in the ordering or categorization of some elements.1 Some clinicians dislike this format because they feel that important information contained in the past history and review of medications is given too little attention, too late. Consequently, a new approach to case reports has developed in which the HPI is the final element. An informal poll of internal medicine program directors indicates that this new method is prevalent in Toronto and Vancouver, whereas the traditional format prevails elsewhere. We argue that neither approach is optimal and recommend a third alternative that stresses the patient's story of illness and engages the doctor's capacity to understand, interpret and communicate the meaning of that story.2 We term this the “storied case report” in recognition of the importance of narrative to the case report.
Consider a patient with jaundice who receives testosterone injections, has used alcohol extensively and has chronic hepatitis B. When the traditional case report format is rigidly adhered to, these data elements are recorded in the medication, social history and past medical history sections respectively. Critics rightly point out that the resulting report lacks a logical flow, and advocates of the second, “HPI-last” approach encourage trainees to present these facts early in the case presentation so that the HPI can be interpreted in light of known information.
If evidence indicated that the HPI-last format resulted in more complete recording of information and improved communication, or if it boosted the diagnostic yield of history taking, we would put aside our reservations. In the absence of such evidence, however, we have 3 objections to it. First, it is excessively mechanical. As with the traditional format, the HPI-last approach compartmentalizes the patient's history into rigid categories without drawing the connections, a regrettable example of how easily data reporting can be divorced from information synthesis. Consequently, when using the new format, even a brilliant presenter may appear to have muddled and disjointed thought processes. As one expert clinician has stated, “Simply to write down or to recite a gaggle of true statements is not to compose a history. The facts must be placed in a form that makes them informative.”1 What's lost is the “narrative text”: the doctor's interpretation and retelling of the patient's history.3
Our second objection is that the HPI-last format may impede effective diagnosis. Emphasizing facts that are irrelevant to the current problem can lead to cognitive errors as the listener is presented with distracting or misleading data. Studies of how expert clinicians formulate differential diagnoses indicate that they consider just a few possibilities simultaneously, generate hypotheses early and often make the mistake of fitting data presented late in the case report to these early hypotheses.4,5 A strategy to help clinicians avoid diagnostic errors would present the most salient information early in the case report and keep less relevant information for later.
Our third and most important objection to presenting the HPI last is that it undermines the telling of stories. This is true of both the physician's interpretative story of the patient's history and the patient's own “experiential text” — the meanings and existential qualities that patients assign to their symptoms and diagnoses.3 Presenting the HPI early is consistent with the aims of narrative medicine, which emphasizes the patient's experiences and circumstances,6,7 and, advocates believe, is therefore more empathic. Narrative medicine aids the physician in that it is in hearing stories that, knowingly and subconsciously, we start the intellectual processes of prediction, evaluation, planning and explanation.7,8 Aesthetic considerations aside, the case report should more closely resemble the linear structure of a film by Frank Capra than the fractured storyline of one by David Lynch.
We suggest teaching trainees to present case reports as the telling of 2 interrelated stories: the patient's (of illness) and the doctor's (of diagnosis and treatment). In doing so, we stress 5 principles. First, the order in which data are presented should reflect these stories, rather than the sometimes chaotic circumstances of data collection. Second, the case report should reflect the patient's experience of his or her illness, for example by including the patients' chief complaint (or chief concern9) rather than the regrettably common “reason for referral.” Third, the case report should reflect the logic of the presenter's diagnostic or therapeutic reasoning. Fourth, the HPI should be extended to include all elements relevant to understanding the patient's current problem, regardless of the section in which they are ordinarily recorded; hence the “H” in HPI. We urge presenters to include phrases such as “Of relevance in the past medical history …” or “The family history is pertinent because …” in the HPI. Fifth, the language of case reports should be suitable for telling stories and sensitive to patients' experiences.9,10
Our advocacy of the storied case report has not been very successful on the wards. Perhaps junior trainees find it too hard to determine what is relevant and senior trainees find it too hard to change their habits. Although we are convinced that approaching the case report as a narrative will make the bedside encounter more scientific (yielding an improved evidence base and structure for making diagnoses) and more artful (yielding an enhanced understanding of the patient's perspectives and needs), we admit that this hypothesis is difficult to test. Perhaps the best argument for such an approach lies in the fundamental human tendency to tell stories and the essential humanism therein.
Ahmed M. Bayoumi Inner City Health Research Unit St. Michael's Hospital Peter A. Kopplin Department of Medicine University of Toronto Division of General Medicine St. Michael's Hospital Toronto, Ont.
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