Perspectives of family‐centred care at the end of life during the COVID‐19 pandemic: A qualitative descriptive study

Abstract

Aim: To explore nurses' and family members' perspectives of family care at the end of life, during restricted visitation associated with the COVID-19 pandemic. Background: To minimise the transmission of COVID-19, stringent infection prevention and control measures resulted in restricted hospital access for non-essential workers and visitors, creating challenges for the provision of family-centred care at the end of life. Design: Qualitative descriptive approach based on naturalistic inquiry. Methods: At a large public hospital in Melbourne, Australia, individual semi-structured interviews were undertaken with 15 registered nurses who cared for patients who died during restricted visitation associated with the COVID-19 pandemic, and 21 bereaved family members. COREQ guidelines informed analysis and reporting.Results: Five themes developed from the data: (i) impact of visitor restrictions, which describes uncertain, ambiguous and arbitrary rules, onerous and inconsistent requirements; (ii) nurse-family communication; (iii) family-centred care and interrupted connections; (iv) well-being and negative emotions; and (v) suggestions for a better way, such as moving away from the black and whiteness of the rules, prioritising communication, compassion and advocacy. Conclusions:Negative consequences for communication and the patient-family connection at the end of life were felt deeply. The evolving COVID-19 rules that were frequently revised and applied at short notice, and the subsequent consequences for clinical practices and care were felt deeply.

A bad time to die? Exploring bereaved families/wha-nau experiences of end-of-life care under COVID-19 restrictions: a qualitative interview study

“…We would go further to contend that, rather than merely framing family/whanau as visitors, it would be useful to conceptualise them as part of the caregiving team. 44 Enabling safe and supported access for family/whanau would both mitigate the stress of the patient and improve grief outcomes for family members. 45 Technology was rarely seen as a sufficient substitution for face-to-face visits which is in line with previous observations, 30 although families used it if it was their only option.…”

“…We would go further to contend that, rather than merely framing family/wha-nau as visitors, it would be useful to conceptualise them as part of the caregiving team. 44 Enabling safe and supported access for family/wha-nau would both mitigate the stress of the patient and improve grief outcomes for family members. 45 …”