The project “Born before the time: the experience of Italian families” was realized by ISTUD Foundation in collaboration with the association Vivere Onlus and the unconditional support of AbbVie. The project provided for the collection of stories of families living the experience of a premature birth and the care pathway. The aim was that of collecting, through narratives, the experiences, the requests, the expectations emerging during the path, in order to individuate the most appropriate interventions for the service management and the support for families. Here we host an interview to Martina Bruscagnin, president of Vivere Onlus.
D. What do you think about the employment of Narrative Medicine, according to your experience?
MB. According to me, Narrative Medicine has a value not only at an information level, but also at the emotional one: subjective aspects, experience can emerge as well, in addition to objective elements. Sharing experiences through narrative is the tool to elaborate and reflect on our story. We must not forget that our narratives are particular, because we are at the same time subject of care, and parents of who is treated. So, our narrative is articulated on two level, and it is ever more necessary because, most of all as for our children, guilt and sense of inadequacy worsen an already difficult situation at a psychological level. It is really important to stop and go back narrating and sharing what has happened.
D. The study employed Narrative Medicine tools: which potentials did it bring? Did you recognize yourself in Narrative Medicine?
MB. Issues are deeply explored: it is not a merely statistical narrative, on the contrary, it becomes possible to deal with the problems at the base, and this allows to identify the needs the problem brings. It is something more. Even those who want to pursue a voluntary activity, or any initiative, will never make such a large contribution compared to who personally lives the experience: the narrative of those who live this situation can give a lot in terms of experience. I recognized myself too, having lived this situation in first person, I felt like it was something written directly from me.
D. Which impact can have Narrative Medicine in the collaboration between clinicians, institutions and associations, and in the organization of care pathways?
MB. Narrative Medicine is a contribution to clinicians themselves, precisely because it conveys a direct witness: it allows you to understand better your interlocutors, so you can protect them to the end. So, it is also a contribution to the operators: even the conferences showed how important it is to talk to parents and professionals. There are emotions that you do not express in times of contingency, but only when the problem has been overcome: at that moment, it becomes important to communicate the experience. From the analysis of these experiences, Narrative Medicine will bring a privileged view to improve or revise the organization of care pathways, both for mothers, when they are themselves the subject of care, and for children.