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

Abstract

AbstractAimTo explore nurses' and family members' perspectives of family care at the end of life, during restricted visitation associated with the COVID‐19 pandemic.BackgroundTo 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.DesignQualitative descriptive approach based on naturalistic inquiry.MethodsAt 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.ResultsFive 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.ConclusionsNegative 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.Relevance to Clinical PracticeTechnology‐facilitated communication, innovation and increased resources must be prioritised to overcome the challenges described in this study. A family‐centred approach to care and emphasising the patient‐family connection at the end of life is fundamental to minimising trauma and distress associated with future public health emergencies.Patient or Public ContributionBereaved family members contributed their first‐hand experience. Members of the health service's patient experience team ensured the research was conducted in accordance with health service guidelines for patient and public contribution.