‘Something normal in a very, very abnormal environment’ – Nursing work to honour the life of dying infants and children in neonatal and paediatric intensive care in Australia

Abstract

The majority of deaths of children and infants occur in paediatric and neonatal intensive care settings. For nurses, managing an infant/child's deterioration and death can be very challenging. Nurses play a vital role in how the death occurs, how families are supported leading up to and after the infant/child's death. This paper describes the nurses' endeavours to create normality amidst the sadness and grief of the death of a child in paediatric and neonatal ICU. Focus groups and individual interviews with registered nurses from NICU and PICU settings gathered data on how neonatal and paediatric intensive care nurses care for families when a child dies and how they perceived their ability and preparedness to provide family care. Four themes emerged from thematic analysis: (1) respecting the child as a person; (2) creating opportunities for family involvement/connection; (3) collecting mementos; and (4) planning for death. Many of the activities described in this study empowered parents to participate in the care of their child as death approached. Further work is required to ensure these principles are translated into practice.