Palliative care in the neonatal intensive care unit: qualitative study of parent experiences.

Abstract

Objectives: To explore parents' experiences of palliative care in the neonatal intensive care unit (NICU) to inform and improve the delivery of family-centred palliative care.

Methods: This exploratory prospective qualitative study employed a pragmatic approach. Parents of an infant who had died in the NICU at the Women's and Children's Hospital, Adelaide, and were bereaved for 6-12 months participated in semi-structured interviews. Interviews via videoconferencing or telephone call were audio-recorded and transcribed. Inductive thematic analysis was conducted to generate themes.

Results: Six parents (four mothers and two fathers) participated in five interviews. Four themes characterised parents' experiences: continual balance of hope and fragility, assuming responsibility for decision-making, forming deep connection and being together but also separate. Parents maintained hope when faced with uncertainty and infant fragility. Involvement in decision-making was important regardless of the scope of options. Opportunities for deep infant connection and sharing the infant with family were highly valued.

Conclusions: Novel findings include parents holding unwavering hope and placing higher importance on both decision-making and forming deep infant connection over providing infant care. These findings can be implemented in neonatal care through clinician communication, hospital procedures and appropriate physical spaces within the NICU. Further similar research is needed to explore a greater range of parent experiences.