Nursing care for the families of the dying child/infant in paediatric and neonatal ICU: Nurses’ emotional talk and sources of discomfort. A mixed methods study

BACKGROUND: The majority of in-hospital deaths of children occur in paediatric and neonatal intensive care units. For nurses working in these settings, this can be a source of significant anxiety, discomfort and sense of failure.

OBJECTIVES: The objectives of this study were to explore how NICU/PICU nurses care for families before and after death; to explore the nurses' perspectives on their preparedness/ability to provide family care; and to determine the emotional content of language used by nurse participants.

METHODS: Focus group and individual interviews were conducted with 22 registered nurses from neonatal and paediatric intensive care units of two major metropolitan hospitals in Australia. All data were audio recorded and transcribed verbatim. Transcripts were then analysed thematically and using Linguistic Inquiry to examine emotional content.

RESULTS: Four core themes were identified: preparing for death; communication challenges; the nurse-family relationship and resilience of nurses. Findings suggested that continuing to provide aggressive treatment to a dying child/infant whilst simultaneously caring for the family caused discomfort and frustration for nurses. Nurses sometimes delayed death to allow families to prepare, as evidenced in the Linguistic Inquiry analysis, which enabled differentiation between types of emotional talk such as anger talk, anxiety talk and sadness talk. PICU nurses had significantly more anxiety talk (p=0.018) than NICU nurses.

CONCLUSION: This study provided rich insights into the experiences of nurses who are caring for dying children including the nurses' need to balance the often aggressive treatments with preparation of the family for the possibility of their child's death. There is some room for improvement in nurses' provision of anticipatory guidance, which encompasses effective and open communication, focussed on preparing families for the child's death.

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

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.