Mothers Who Accompany a Child to Their Death: Starting Again Without Ever Forgetting.

Abstract

Background/Objectives: Parents who accompany their children with a complex chronic illness until their death experience a unique situation, with vulnerabilities, specific needs and enormous suffering. The aim of the study was to describe the lived experience of parents who accompanied their children with a complex chronic illness until their death, in a paediatric palliative care setting. Methods: We opted for a qualitative methodology, with a descriptive phenomenological orientation. Phenomenological interviews were carried out with nine intentionally selected mothers, with the support of a paediatric palliative care hospital team. The procedural phases of van Kaam's method, modified by Moustakas, were used to analyse the data. Results: An understanding of the essential structure of the phenomenon is revealed in a description made up of three essential themes: 'facing the harbinger of illness'; 'living (together) with a sick child'; and 'starting again without ever forgetting: living with an absent child', the latter being the subject of this article. Conclusions: The participants attribute a self-transforming meaning to their lived experience of accompanying their children. Nurses will be able to access the lived experience of these mothers and improve their intervention in the process of their children's illness, as well as in their bereavement process. There are also contributions to research and teaching in palliative care in the area of child and paediatric health.