“Narrative medicine should be done!”
It is with this sentence, which leaves no space for interpretation, that the workshop of II SIMeN Congress dedicated to research and documentation, in which I had the pleasure of acting as speaker, ended.
A strong message that came at the end of a pleasant discussion with the participants to the workshop, gathered to share scenarios, seek answers, exchange experiences of narrative research. A work table born, already in the title “narrative research and documents”, with very pragmatic objectives but which felt the need to discuss first of all on the very meaning of doing research through the narrative. Does it make sense to do narrative research? Narrating is building relationships, getting excited, the most famous definition of Narrative Medicine talks about “recognizing, absorbing and interpreting the illness stories, and being emotionally touched by them”, how much should it be “anonymous” as requested by the Ethical Committees in a relationship involving the person?
In order to answer to these questions, the working group started sharing a differentiation, between what is “narrative research”, i.e. that planning that is born with the specific objective of investigating a specific phenomenon through the use and potentials of narrative, and “clinical narrative research”, or rather that research arising downstream of the use of narratives in daily clinical practice.
In both cases, the potential of narrative research is tangible, allowing us to understand the experiences of health and caring, to know lifestyles, languages used, the social, cultural and valorial context of reference, deepen organizational aspects, explore not only the events but also the meaning that the person attaches to the events themselves. Trisha Greenhalg‘s enlightening speech during the SIMEN Congress reiterated the absolute need to promote research to understand the cultural contexts of health, making clear mention to the WHO Europe guidelines published in 2016 in which ISTUD participated as a reviewer. This important document sheds light on what “good narrative research” is, providing the appropriate and rigorous methodology to follow. Its application, however, conflicts on one side, with the difficulty in understanding the value of narrative research by the healthcare world that has always been focused on epidemiological and strictly clinical issues, and on the other side, with the bureaucratic complexity of the healthcare contexts in which the research must fit.
The workshop’s working group elaborated the analysis of the main phases of narrative research starting from the objectives. Why undertake a narrative research project? What personal and organisational reasons are there for the project? Knowing how to answer these questions means laying a solid foundation for a good approach to the project, making it easier to communicate its aims with colleagues and decision-makers.
The other aspect that was discussed was the importance of the project team composition, the need to train on what is research and what is narrative medicine, to be able to convey the motivation and to understand the potential of the project to develop ” alliances”.
We then passed to the analysis of the documentation to be provided, sharing the need to submit the research to the Ethical Committee, aware that often the commissions do not know the narrative medicine and therefore they must be supported by a gradual understanding through the use of a language that is partly familiar to them but that does not fall into the forcing of “EBM” terminologies and schemes.
The discussion continued on aspects of narrative research methodology: references of narratives, collection methods, times, spaces (to whom, how, when and why I should propose it). On behalf of the Healthcare Area of ISTUD I presented our research methodology which, since 2004, when we started in a pioneering way with the first experience of narrative research in palliative care, we have improved with motivation and tenacity to produce several publications in peer reviewed scientific journals and be recognized as an expert research center abroad.
I think that one of the most important aims of those who undertake narrative research is to be able to communicate to the scientific community of reference, especially the most reductionist, the potential of what is obtainable by working with narratives, results difficult to achieve with questionnaires and quantitative scales. At the basis of our modus operandi, actually, there is the desire to integrate and complete evidence-based scientific research by creating bridges, adding to the quantitative tools validated in the literature (quality of life questionnaires, scales on residual functions, etc.) also a narrative plots that broaden the investigation and allow you to get deeper into the topics covered. I personally think it is simplistic to assign the work of narrative research only to journals that deal with qualitative research so that this division between clinic and quality of life is a squander. Between the two extremes, I believe that we must make an intermediate production flourish, that can combine “quantity” with “quality”. For this reason as well, in our research we don’t limit ourselves collecting a small number of narrations, conversely we also evaluate the epidemiological data of the disease we are working in, to reason about a number of narratives that may be relevant to make adequate reflections and in-depth analyses.
The issues raised by the working group in Arezzo would have required more than a one-day workshop, the hope is that the great interest around the narrative research, also witnessed by the growing production of works, can continue towards a new culture of health and care services.