The WHO document on narrative research for health sector: interview to Maria Giulia Marini, reviewer for WHO

img-20160912-wa0002Q. How has started the participation to the review of this document?

MGM. First of all, it was an extraordinary pleasure to know that the World Health Organization was finally addressing the methodology of narrative research for health sector: it’s an arrival point for all who have studied for decades and worldwide how to improve health services through narrative methods. As for the birth of this project, we can notice two interesting points: first, the work of a task-force specifically concentrated on cultural contexts, with the purpose to integrate narrative aspects with standardized tools. Secondly, the project was born in the Health Evidence Network – where “Evidence” refers to Evidence-Based Medicine, that is a medicine based not on consensus, but on evidences. This means that these policies were addressed by WHO methodologists working on research. The title is clear: Cultural contexts of health: the use of narrative research in health sector. The group has been leaded by Nils Fietje, supervisor of the issue of cultural contexts in health sector for WHO.

Q.Which has been your role in the review process?

MGM. Trisha Greenhalgh is the author of the report. Me and Brian Hurwitz from King’s College London were the reviewers. I didn’t know who the author was, neither who was the other reviewer. Even without knowing each other – as it’s correct, in such a project – we worked hard in order to define a common view of narrative research. In the first version of the report there was still a split between Evidence-Based Medicine as “true science” and storytelling and Narrative Medicine as “art”. I tried to mediate this split, because I think – as I wrote in my book Narrative Medicine. Bridging the gap between Evidence-Based Medicine and Narrative Medicine – that what is important is the quality of the research, both qualitative or quantitative. A clinical trial and a Narrative Medicine research could be both factious. What matters is the intellectual honesty of research planning, the scientific independence, and a plausible lecture of results. Anyway, I want to say – as in Popper’s words – that these results will be valid until the day they will be contradicted.

Q. Which are the fundamental passages of this document?

MGM. The rationale is fundamental to understand the reason why this document is necessary. In 2014 the Lancet published the report Culture and Health, underlining the fact that the incomprehension of the context in which patients live is one of the main causes of the impossibility to access adequate cares. Here’s why it’s important to use more refined methods to understand the context in which people live and carers work. In this document there’s an interesting introduction on narrative in healthcare, and which narrative research we want to address: from the clinical case traditionally written, to the individual narration of the illness; from the narrative study of healthcare organizations or systems, to cultural and historical narratives, and to the multiple voices of web communities and social movements. We can see the extent of the stories. It’s interesting to notice that fiction is missing: there’s a strong link with real life, employing narratives and stories collected in real time, but novels are not contemplated. Furthermore, the document states the fact that we need to know what we are studying, to see the research design, the quality and transparency of data, stories and analysis: so, good practices belonging to any correct research methodology. Potentialities of narrative approaches are also stressed: stories, in general, can be not linear and refer to a reality much more complex of the one we tend to simplify in clinical studies. Stories remains in memory. Stories can capture that tacit knowledge that is not codified – for example – with other collecting tools, or that has never been considered. Often narratives have an ethic dimension, concern situations in which patients are fragile, abandoned, alone. There are limits in narrative approaches too: we cannot apply the same interpretation to any story, because it varies according to who is reading. Furthermore, the analysis must be conducted by a multidisciplinary team of scientists and humanists, in order to let emerge not only numbers from the analysis.

Q. How can narrative research help healthcare policies and planning?

MGM. We may analyse narratives basing on the fact that they have a moral sense, they are a chronicle of what has happened, or they are indicating the emotional state of a person. Narrative research can be employed with individuals, families, communities, and healthcare professionals in order to develop healthcare pathways dedicated to the patient. We can take obesity as a concrete example: in Europe, obesity has been studied through a narrative approach with the purpose to understand the relationship with food and nourishment. Only through narrative approach we can help the obese person to take care of his/her own body. We cannot impose a diet, but it’s necessary to understand which are the food habits of the family, if and how this project can fail or have success. Another case cited in the document is the mental health of migrants, with whom Europe have to deal, willing or not. From healthcare service’s point of view, in general the inquiry regards data records and few social variables: age, sex, social status, ethnic group, religion. Yet it emerges that this people accumulated so much stress to be “labelled” – from a clinical point of view – as affected by Post-Traumatic Stress Disorder (PTSD). On the contrary, narrative identifies these migrants as people with Odysseus syndrome: a man sailing for a long time, far from his beloved ones. If we identify the migrant as a “sailing Odysseus”, we change the relational approach: through the idea of Odysseus we contact something ancient, regarding the journey, fatigue, distance, and even failure. Through this example WHO tries to give policies of attention – if not of welcome – to demographic changes of our continent due to migratory flows.

Q. To whom this document is addressed?

MGM. This document, written in a simple but rigorous language, are addressed to the 53 countries of WHO Regional Office for Europe: it will be read by the Ministers of Health of all the countries that will accept it. In Italy, this work has been already anticipated – in terms of healthcare policies – by the 2014 guidelines by the Italian National Institute of Health. The focus of that work was on the use of Narrative Medicine in clinical practice, while the focus of this project was that of understanding how we can activate narrative research for healthcare sector. Another important point is that this work does not distinguish between public healthcare, private healthcare and no profit: narrative approach is a competence that can regard every carer and every patient in any healthcare setting. Narrative methodology becomes a competence we cannot be disregarded anymore.

HEN Synthesis Report 49


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