A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic

Hanna, Jeffrey R. and Rapa, Elizabeth and Dalton, Louise J. and Hughes, Rosemary and McGlinchey, Tamsin and Bennett, Kate M. and Donnellan, Warren J. and Mason, Stephen R. and Mayland, Catriona R. (2021) A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic. Palliative Medicine Journal, 35 (5). pp. 843-851. (https://doi.org/10.1177/02692163211004210)

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Background: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families’ needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. Aim: To explore relatives’ experiences and needs when a family member was dying during the COVID-19 pandemic. Design: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. Setting/participants: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. Results: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member’s condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of ‘saying goodbye’ in a pandemic. Conclusions: Health and social care professionals can have an important role in mitigating the absence of relatives’ visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to ‘say goodbye’.