Bioética e medicina narrativa em contexto dos cuidados intensivos neonatais
: o lugar das narrativas de pais e profissionais de saúde

  • Carmen Dolores Moreira de Carvalho (Student)

Student thesis: Doctoral Thesis

Abstract

The last few decades have been marked by extraordinary technological and therapeutic advances in neonatal intensive care, which have contributed to a noticeable decrease in mortality and morbidity. These advances have had repercussions, not only in the improvement of care, but also on ethical decisions requirements. In an era characterized by significant progresses in terms of diagnosis and by wide therapeutical possibilities concerning rare and complex diseases, parents' involvement in decision-making is a priority. Narrative medicine has emerged in response to the difficulties experienced by health professionals, regarding ethical and relational issues concerning those who care and those who are cared for. Given the scarcity of specific studies on the approach of narrative medicine in Neonatology, we have proposed to study the contribution of parents' and health professionals’ narratives in this field, concerning two essential dimensions: communication and decision-making in neonatal intensive care. Our qualitative research study has been conducted from a bioethical perspective allied with the concepts and tools of narrative medicine and narrative research. Parents' narratives contents are rich and diverse in terms of feelings and emotions, revealing how this subjective dimension interfere with communication and decision-making. As far as health professionals' narratives are concerned, they tend to focus on strong ethical questioning. The emerging categories of our study are metaphors, moral suffering, and spirituality. Despite this study-limited representativeness, it underlines the need to promote and develop strategies to improve communication and decision-making, as well as training in the fields of bioethics, medical ethics, and narrative medicine. Moreover, it highlights the importance of practice-based-evidence and narratives in this field of healthcare. More studies are needed
Date of Award22 May 2023
Original languagePortuguese
Awarding Institution
  • Universidade Católica Portuguesa
SupervisorSusana Magalhães (Supervisor) & Lincoln Justo da Silva (Co-Supervisor)

Keywords

  • Neonatal intensive care
  • Bioethics
  • Narrative medicine
  • Narrative research
  • Communication
  • Decision making

Designation

  • Doutoramento em Bioética

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