Family Experiences of Loss and Bereavement in Palliative Care Units during the COVID-19 Pandemic: An Interpretative Phenomenological Study

Abstract

The COVID-19 pandemic significantly interrupted the grieving experiences of bereaved families and drastically changed their ways of dealing with loss. Our study aims to gain an in-depth understanding of the experience of bereaved relatives of patients who died in palliative care units during the COVID-19 pandemic. The phenomenological research design included sixteen family members of hospitalized palliative patients who died from November 2021 to June 2022. The study involved conducting qualitative in-depth semi-structured interviews with family members 12-24 months after the death of their loved ones. The interviews aimed to gather information about the experiences of the families both before and after the death. The COREQ guidelines were applied in the study. Participants were mainly female (n = 13) with a mean age of 47.25 (SD = 12.58). Data were analysed using the Interpretative Phenomenology Analysis (IPA). The following three categories were identified: (1) navigating loved ones' final weeks and days (troubled deaths); (2) the last farewell was robbed; (3) looking for adjustment after loss. One overall main theme emerged, which was as follows: "Struggling between stolen moments and painful losses to get back into the flow of life". This study provides novel insights into end-of-life care and bereavement from the perspectives of family. Our findings suggest that developing and promoting family-centred culture can lead to compassionate palliative care focused on a myriad ways of affirming that their loved one matters.