Bioethics and narrative medicine in the context of neonatal intensive care: The role of parental and health professional narrative

Carmen Carvalho
Director of Neonatology Service 

Carmen Carvalho is a specialist in pediatrics, with subspecialty in neonatology, is also Director of the Neonatology Service of Centro Materno Infantil do Norte, ULS de Santo António.
She got her Ph.D. in Bioethics at Universidade Católica Portuguesa in May 2023, under the supervision of Professor Susana Teixeira Magalhães.


How would you acterize the current state of neonatal intensive care?

The last few decades have witnessed extraordinary technological and therapeutic advances in neonatal intensive care, leading to a remarkable reduction in morbidity and mortality. These advances have not only improved care, but have also increased the ethical demands on decision-making. In an era marked by significant developments in diagnosis and a wide range of therapeutic options for rare and complex diseases, the involvement of parents in decision-making is of paramount importance.

What was the main focus of the research developed?

Narrative medicine has emerged as a response to the challenges healthcare professionals face in addressing ethical and relational issues between caregivers and patients. However, there is a paucity of specific studies on the application of narrative medicine in neonatology. Therefore, we undertook a study to examine the role of parental and healthcare professional narratives in neonatal intensive care, with a particular focus on communication and decision-making. Our qualitative research is conducted a bioethical perspective and incorporates concepts and tools narrative medicine and narrative research.

What study findings would you highlight?

Parents' narratives encompass a rich spectrum of emotions and shed light on how subjective experiences influence communication and decision-making. Conversely, healthcare professionals' narratives often delve into profound ethical issues. Emerging themes our study include metaphor, moral distress, and spirituality.

What are the key takeaways the study?

Although the scope of our study is ed, it underscores the need to implement strategies to improve communication and decision-making and to provide training in bioethics, medical ethics, and narrative medicine. It also highlights the importance of practice-based evidence and narratives in neonatal care. Further research in this area is warranted.


Keywords: bioethics; communication; decision making; narrative medicine; narrative research; neonatal intensive care