Accompaniment of young adults at the end-of-life: The spouse's lived experience

Studies with the spouses of young adults with cancer at the end-of-life are scarce, and it is little known how they experience care. This study aims to understand the lived experience of the phenomenon of accompaniment for young adults at end-of-life by their spouse. This was a qualitative study, with a hermeneutic-phenomenological design, guided by the conceptual principles of Heidegger and Gadamer. Seven phenomenological interviews were carried out with spouses of young adults, whose narratives were analyzed according to the Gadamerian perspective. The phenomenon of accompaniment unfolded into eight topics: “Accompanying as a human commitment”, “Anticipating loss”, “Setting limits”, “Navigating under the shadow of death through the health services”, “Keeping away the shadow of death by infusing life”, “Being with”, “Initiating the unknown path step by step, seeking to rebuild and co-construct oneself”, “The subjectivity and paradoxicality of the lived time”. The accompaniment showed to be the most challenging lived experience for these spouses. They were faced with the threat of their partner's untimely death, which determined their expectations from institutions and health professionals. Faced with this threat, they showed to be diligent in the care of their partner, seeking to provide them with more time to live and a meaningful life. This experience was characterized by multiple losses that resulted in suffering, which left marks on the spouses that conditioned the way they saw the present and the future. These results suggest the need for a differentiated intervention to mitigate the suffering of this spouses. •Accompaniment was the most challenging lived experience for the young adult spouse.•The threat of premature death of the partner determines the needs of the spouse.•The spouse seeks to provide more time for his or her partner and a meaningful life.•This lived experience generates suffering in the spouse and leaves persistent marks.•This lived experience was unpredictable, disturbing and turbulent for these spouses.