Project Work of the 17th Edition of the Master’s Degree in Narrative Medicine by Anna Chiara Ferrini and Fabiola Zaffalon
Often in hospital settings urgency and workload are not compatible with caring for relationships and dialogue between healthcare professionals and patients.
We are two nurses working in different fields, united by sick newborns hospitalized in the NICU and newborns diagnosed with hemorrhhagic or thromboembolic disease. We accepted the challenge of giving value to the relationship despite everything in order to create a humane atmosphere and mutual trust.
We started by administering a set of open-ended questions addressed to healthcare professionals and parents, since we are talking about newborns and children, to build a narrative expressing how one feels within the unit from different perspectives.
The collected narratives showed that the emotions mainly shared by both sides were trust, fear and acceptance.
The narrative styles were divided into dramatic style, a parent writes: “time stops, there is only the sound of the monitor” and on the other side the healthcare professional expresses clinical frustration with “the risk of giving back a child with severe disability”. The heroic style: a parent writes “the team does an incredible job”, for healthcare professionals “the discovery of resilience” sometimes we have endless resources. The didactic style, for parents: “I wish my twins could be well so I can bring them home”, for healthcare professionals “it is necessary to insist, to talk, to explain…”. The epic style, for parents referring to the child “our little warrior” and for healthcare professionals “feeling important in being there during end-of-life accompaniment.”
The parents’ narratives were classified according to Kleinman’s model for caregivers, highlighting in the disease the complete disorientation of parents who have to face a premature birth or a diagnosis of chronic disease… “I had the feeling that nothing would ever be the same again”. The illness, meaning taking charge of the disease and finding coping strategies to face it: “for my little one I feel able to stay close to him and interact with him and learn day by day how to know him better”. The sickness, the perception of how others see us and how we as parents feel in front of society: “we immediately told all our loved ones what we had discovered, because disability is not and must never be a fault or a shame”.
The healthcare professionals’ narratives were classified according to Bury’s model. The core expresses the emotional impact: “I could not excessively minimize the problem but I felt it was right to give optimism, to give possibilities of therapy, resources and life, I felt great satisfaction in being able to give hope to a parent who had given up, who deserved to rejoice in the birth of their child”. The moral, the frustration deriving from wanting to do better and not succeeding or from having excessively high standards: “we should probably try to have a more personalized approach with those parents in critical situations”. The contingent, the ability to tell one’s own experience in a professional and detached way to reinforce emotional boundaries: “experience has taught me that transparency in therapeutic plans and admitting the limits of medicine helps parents accept the situation”.
The language analysis with the help of AI was expressed through the image of an iceberg where implicit language represents the larger submerged part and the use of metaphors was expressed as a stormy sea at the foot of a mountain difficult to climb with dangerous overhangs.
The use of verb tenses develops along a timeline that sees a yesterday where healthcare professionals relive the prompt action in taking care of the newborn and parents the nostalgia of a happy past, the present time where healthcare professionals analyze what has been done and reflect on what can be improved and parents internalize living with the disease, a future line where healthcare professionals hope for a more personalized approach and parents wish serenity for their child.
This first work made us aware of the importance of Narrative Medicine applied in healthcare settings and how it can improve the therapeutic alliance, exercise the right to be listened to and understood in difficult moments for both actors, the usefulness of having a parallel chart and referring to the goals of the UN 2030 Agenda provide the right to health for the children of foreign parents by overcoming language barriers, dedicating a listening space for caregivers where they can tell their stories.
“Every time is the first time”.
Communicating a diagnosis and welcoming life in the NICU
will never become routine.
Giving voice to the unspoken, beyond words, is the first
fundamental medical act to care for those who suffer and
protect those who care.”
