The clinical, operational, and financial worlds of neonatal palliative care: An ethnographic investigation.

摘要

In this focused ethnography the researcher sought to gain a multidisciplinary perspective on the cultural context of neonatal palliative care, including Peek's three world view of clinical, operational, and financial elements that impacted such care. The perspectives of thirty-six health-related professionals (pediatric clinical, allied health, financial, and operational staff) informed the identification of institutional cultural issues that affected the provision of neonatal palliative care at a tertiary care regional medical center. The researcher conducted semi-structured interviews that explored the personal and professional experiences of study participants related to the care of dying neonates in general and the planning of a formal neonatal palliative care program in particular. Study findings revealed that participants experienced a tension between balancing intense emotional responses to caring for dying infants and their desire to be competent and compassionate care and service providers. Their experiences are influenced by the relationships with the patients, colleagues on their healthcare team, and contextual factors present in their medical institution.