Spouses' grief before the patient's death: Retrospective experiences related to palliative home care in urban Sweden

Abstract

Based on the lived experience research model, this study retrospectively explores the experiences of spouses of persons who died after being admitted to palliative home care, in order to achieve a deeper understanding of the meaning(s) of spouses' grief before the patient's death. The context for the study was palliative home care in urban Sweden. The transcripts from interviews with 12 spouses were analysed according to a hermeneutic phenomenological method. Six themes were found: realizing that the partner would soon die, changed relationship, fear-inducing feelings, focusing on doing the utmost for the sick partner, trying to live as usual, and time slipping away while also standing still. These themes were interpreted as aspects of grief: initializing grief, the emergence of grief, lacking the space to grieve, holding grief at a distance, handling grief, and a temporality paradox of grief. Among the most salient aspects of this research was the finding that spouses often put their own feelings at a distance, and endured suffering in silence. This suggests the need for support for spouses that not only aims to enhance their ability to facilitate the end-of-life situation for the sick partner, but also helps them to master their own lives.