The purpose of this interpretive narrative research is to explore the experiences of Neonatal Intensive Care Unit (NICU) nurses with end-of-life care of infants and their families. Guided by Newman's Research-as-Praxis, we met with nurse participants from a tertiary care NICU twice in small groups and once on the telephone to share their stories. Patterns of relationship were discerned and shared with our participants for their affirmation, challenge, and elaboration. NICU nurses' end-of-life experiences include relationship patterns, knowledge construction, and tensions of temporal and spatial proximity of suffering and death. Arts-based forms of dissemination of our findings have been developed to invite readers into reconstruction of their experiences and to demonstrate the transferability of the method.
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinicians who counsel families in these circumstances, determining which ones might benefit from early palliative care referral can be challenging. We assert that all women carrying a fetus diagnosed with a life-threatening condition for which comfort-focused care at birth is one ethically reasonable option ought to be offered palliative care support prenatally, regardless of the chosen plan of care. Early palliative care support can contribute to informed decision making, enhance psychological and grief support, and provide opportunities for care planning that includes ways to respect and honor the life of the fetus or baby, however long it may be.
This article reports findings from a phenomenological inquiry into how parents experience End-of-Life (EOL) photography around the death of their newborn in the neonatal intensive care unit (NICU) and in their lives beyond the hospital. The study involved semi-structured interviews with 10 parents who had experienced the death of their newborn within the last five years in the same NICU setting. All parents had participated in EOL photography, having photos taken by nurses, by themselves, and/or by volunteer professional photographers. Through an Interpretive Phenomenological Analysis, the theme of "living relationships" emerged, revealing the photography as valued more than for the photos as "mementos," but further as an activity grounding relationships and fostering interaction between families, newborns, and care-providers; these findings provide insight into how parents came to see their EOL photos as "prized possessions." The article is concluded with a discussion on a Model for Photographing Living Relationships.
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