Abstract
Background and Purpose: The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study objective was to examine provision of PC as experienced by mothers and healthcare providers (HCPs) of NICU patients with life-threatening illnesses. Palliative care components explored included communication, choices, comfort, psychosocial and spiritual needs, and coordination of care.
Methods: In this qualitative, descriptive study, we conducted semistructured interviews with mothers of infants with life-threatening illnesses and NICU HCPs who cared for these infants. Mothers selected HCPs who were key figures during their infant's NICU stay to participate. Interviews were transcribed and manually coded until themes emerged and theoretical saturation was achieved. Researchers reviewed charts for demographics and notes pertaining to PC. Triangulation of maternal interviews, HCP interviews, and chart notes was performed.
Results: Theoretical saturation was achieved after 12 interviews. Mothers identified 5 nurses and 1 physician to be interviewed. Five themes were identified following data analysis and triangulation: (1) communication, (2) privacy, (3) continuity of care and relationship building, (4) maternal knowledge seeking, and (5) emotional turmoil.
Implications for Practice and Research: Of domains of pediatric PC explored, participants emphasized transparent communication, family meetings as a venue for collaboration and shared decision making, the significance of psychosocial support for maternal emotional distress, and the importance of continuity of care across an often long and stressful hospitalization. Although mothers desired privacy, participants valued the security of the open-room NICU design. Future research should address components of PC that predominate in this specialized population.