Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care.

ABSTRACT

OBJECTIVE: To describe the experiences of nurses as they learned to provide palliative care in the NICU. DESIGN: Interpretive description. SETTING: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers. PARTICIPANTS: Nine NICU nurses with 3 to 21 years of experience who provided neonatal palliative care. METHODS: We collected data using online interviews that we recorded and transcribed. We analyzed data using immersion, inductive coding, reflective memoing, and thematic analysis. RESULTS: Participants received little or no formal education in neonatal palliative care and instead learned to provide this care through observation and experience. Participants said it was important to find meaning in their work, which contributed to their motivation to learn to provide high-quality neonatal palliative care. Participants described challenges, including unit cultures in which early palliative care was not embraced. We identified three overarching themes that represented the participants' experiences Meaning-Making in Neonatal Palliative Care, Challenges in Providing Neonatal Palliative Care, and Ill-Prepared to Provide Neonatal Palliative Care. CONCLUSION: Standardized education may improve the quality of care and nurses' experiences with neonatal palliative care. We recommend designing and evaluating a standardized curriculum on neonatal palliative care.