Creating a safe space': how perinatal palliative care coordinators navigate care and support for families

Creating a safe space': how perinatal palliative care coordinators navigate care and support for families

Côté-Arsenault D; Denney-Koelsch E; Elliott G

International Journal of Palliative Nursing

2021

Care coordinator; Case Management; Curriculum; Delivery of Health Care; Family; Fetal diagnosis; Grief; Newborn Infant; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Qualitative Research

BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these families, yet little is known about their function and roles. AIMS: This study sought to describe the PPCC's approach to care, their guiding principles and the roles, knowledge and skills that enable them to provide exemplary care. METHODS: This qualitative descriptive study included interviews of 12 expert PPCCs. Directed content analysis was used to identify major codes. Iterative analysis led to theme identification. FINDINGS: Findings include the PPCC's position within the healthcare system, guiding principles, goals, roles and responsibilities, and knowledge and skills. Two figures enhance the understanding of the PPCCs approach to creating a safe space for the family, supporting the interdisciplinary team and facilitating coordinated birth planning. CONCLUSIONS: Every perinatal palliative care programme should include a PPCC. Future research on clinical training could examine the effectiveness of an educational intervention, using the detailed knowledge and skills learned in this study as a curriculum.

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December 2021 List