Objectives: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families play a integral role in the decision-making process for their infant, but their experiences with and perceptions of the support and care provided to them via NPC is unclear to health professionals. This literature review summarizes the state of knowledge on parents' perspectives of NPC while focusing on the specific factors that influence their experiences and satisfaction with NPC.
Methods: A systematic literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Articles published in peer-reviewed journals between January 2010 and January 2021 that investigated parents' perceptions of neonatal palliative care either as their central topic or as a sub-topic as part of a larger focus.
Results: A total of 16 articles (N = 16) were included in this review. Three overarching themes encompass the findings of the literature review: parent-clinician interactions, parent-infant interactions, and parent-self interactions. Within these themes, topics such as consistent and clear communication, involvement in care decisions, and social and psychological support were explored.
Conclusion: Clinicians must focus on these important quality indicators to ensure they provide the best care possible to the patients and families that they serve. Further research must be done to investigate parent satisfaction and needs in relation to NPC more deeply and to develop more supportive interventions and protocols.
Keywords: experience; family; neonatal; neonatal intensive care units; palliative; parent; quality.