title: '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.
authors.affiliation: Monash University, School of Nursing and Midwifery, Building E, PO Box 527, Frankston, VIC 3199, Australia. Electronic address: Melissa.bloomer@monash.edu.
authors.forename: Melissa J
authors.initials: MJ
authors.lastname: Bloomer
authors.affiliation: Monash University, School of Nursing and Midwifery, 10 Chancellors Walk, Clayton Campus, Clayton, VIC 3800, Australia. Electronic address: Ruth.endacott@monash.edu.
authors.forename: Ruth
authors.initials: R
authors.lastname: Endacott
authors.affiliation: Monash University, School of Nursing and Midwifery, 10 Chancellors Walk, Clayton Campus, Clayton, VIC 3800, Australia. Electronic address: Beverley.copnell@monash.edu.
authors.forename: Beverley
authors.initials: B
authors.lastname: Copnell
authors.affiliation: Monash University, School of Nursing and Midwifery, Building E, PO Box 527, Frankston, VIC 3199, Australia. Electronic address: Margaret.oconnor@monash.edu.
authors.forename: Margaret
authors.initials: M
authors.lastname: O'Connor
mesh_terms: D001293:Attitude to Death; D001315:Australia; D002648:Child; D003422:Critical Care / Q000379:methods*; D017144:Focus Groups; D006801:Humans; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal; D015278:Intensive Care Units, Pediatric; D009723:Nurse-Patient Relations; D009726:Nurses / Q000523:psychology*; D009741:Nursing Staff, Hospital / Q000523:psychology*; D011368:Professional-Family Relations; D036301:Qualitative Research; D013727:Terminal Care / Q000379:methods*
keywords: Death; Dying; End of life care; Neonatal intensive care unit (NICU); Paediatric intensive care unit (PICU); Paediatric nursing; Rituals