A qualitative study of nurse observations of symptoms in infants at end-of-life in the neonatal intensive care unit

Abstract

Objectives Assessment and management of symptoms exhibited by infants can be challenging, especially at the end-of-life, because of immature physiology, non-verbal status, and limited symptoms assessment tools for staff nurses to utilize. This study explored how nurses observed and managed infant symptoms at the end-of-life in a neonatal intensive care unit. Research Methodology/Design This was a qualitative, exploratory study utilizing semi-structured face-to-face interviews, which were tape-recorded, transcribed verbatim, and then analyzed using the Framework Approach. Setting The sample included 14 staff nurses who cared for 20 infants who died at a large children’s hospital in the Midwestern United States. Main Outcome Measures Nurses had difficulty recalling and identifying infant symptoms. Barriers to symptom identification were discovered based on the nursing tasks associated with the level of care provided. Results Three core concepts emerged from analyses of the transcripts: Uncertainty, Discomfort, and Chaos. Nurses struggled with difficulties related to infant prognosis, time of transition to end-of-life care, symptom recognition and treatment, lack of knowledge related to various cultural and religious customs, and limited formal end-of-life education. Conclusion Continued research is needed to improve symptom assessment of infants and increase nurse comfort with the provision of end-of-life care in the neonatal intensive care unit.

A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life

“…In a number of studies, healthcare professionals stated that access to specialist support, for example, from a paediatric palliative care team, would be favourable for paediatric symptom management. 24,35,54,77 In three studies, healthcare professionals had access to either a specialist paediatric palliative care team or support from other colleagues, and this was viewed as beneficial for effective symptom management. 52,67,76 In one study, the involvement of a palliative care team was delayed by physicians, who were concerned about families readiness for palliative care, the association of 'palliative' with 'death' and the fear of negatively impacting the physician-family relationship.…”

“…34,39 In line with this, healthcare professionals with more experience reported greater confidence in treating pain 33 and this was associated with less fatigue in children. 71 A lack of experience or exposure to certain conditions meant that healthcare professionals voiced difficulties in managing rare and/or progressive conditions 48 and in recognising and treating symptoms 35,52 sometimes due to a lack of guidance or evidence (Q34, Q35). 48 Studies found improvements in healthcare professionals' comfort, confidence or knowledge following training or education aimed at improving end-of-life symptom management.…”

Neonatal End-of-Life Symptom Management

“…The evaluation is largely reliant on clinician and family perception of symptoms. A recent qualitative exploratory study interviewed NICU nurses about the EOL care their patients received (32). While small, this study displayed themes of uncertainty, discomfort, and chaos.…”

“…Parents may perceive their baby is distressed by physical changes they observe during the dying process. They often equate these changes with pain or discomfort (32,44,45). As symptom assessment has a component of subjectivity, there can be differing opinions from those interacting with the baby.…”

“…While there is a body of evidence and guidance for the treatment of EOL symptoms in adults and adolescents, there is limited data for neonates (20). As a result, there is a great deal of variability in pharmacological and non-pharmacological end-of-life symptom management for neonates (32,47,48). While there is variability, it is important that symptoms including pain are addressed by both pharmacological and non-pharmacological means (49).…”