L’expérience de soin vécue par des infirmières de soins intensifs avec des patients cérébrolésés et leurs proches lorsque l'arrêt de traitement devient une option

The care experiences of critical care nurses with brain-damaged patients and their loved ones as withdrawing treatment becomes an option confront nurses with challenges that arise particularly when establishing the nurse-patient care relationship and when putting their advocacy role into action. Among the nursing theories, Watson's Human Caring (1979/1985/2008/2012) positions the relationship with the patient, a transpersonal relationship, as a moral ideal. Therefore, when faced with challenges in developing this relationship, nurses question both their practice and their understanding of the nature of care, which is the focus of their discipline. However, to date, very few studies have focused on understanding nurses' experience of caring for brain-damaged patients and their loved ones as withdrawing treatment becomes a care option. This is despite the fact that the challenges, and the questions they raise for nurses, can have important implications for those being cared for in a critical care environment.  Based on projective constructivism, Morin's complex thinking and Ricoeur's philosophy of understanding, the purpose of our study was precisely to seek to describe and understand the care experience of critical care nurses with brain-damaged patients and their families when withdrawing treatment becomes an option. This research was carried out from an interpretative descriptive specification, drawing its origins from the nursing discipline, inspired by the Narrative Inquiry, a method that aims to study the experience (Chase, 2005; Clandinin & Connelly, 2000). Eleven nurses from the regions of Montreal and Quebec City participated. The researcher met with each participant three times to carry out the data collection from which the research narratives were co-constructed, and the first level of analysis was carried out. This analysis, which remained descriptive, continued through analytical questioning (Paillé & Mucchielli, 2012) of complex design in dialogue with the 11 research narratives. The knowledge built up in two stages, a descriptive phase and an interpretative phase on this experience of care constituted the foundations of our reflection to activate the conception of new disciplinary knowledge on the ontology of care. We have interpreted that the care, which we call “humanethical”, can be designed in the construction of a complex open system, with: a purpose, a good life with and for a happy patient; an ecology in which it is organized, where the social environment is preponderant; a temporal evolution unfolding in space-time; an unspeakable relatedness , the relational dimension essential to care; but also an element of uncertainty. Modelling the “humanethical” care, a complex system, is presented through a narrative inspired by nursing practice. In this study, storytelling proved to be a relevant tool, as narrativity not only helped to question and reflect on practice during data collection and analysis, but also provided a dynamic and pragmatic representation of empirical and theoretical findings. Thus, our project through the deepening of experiences lived in practice by nurses has led to the advancement of a new theoretical perspective on care. In addition, through a narrative, we have proposed levers that can be operated in practice by nurses, regardless of the context in which the care takes place. This led to a number of reflections and implications for clinical practice, education, management and research in nursing. Therefore, this practice-oriented study not only has the potential to support nursing practice, but also to raise new questions about the nature of care, thus enabling its further development.

Keyphrases: Narrative Inquiry, relation, Care experience, brain-damaged patients, withdrawing treatment, intensive care, nursing, complex system, relatedness, relationship, “humanethical”