What are fathers’ experiences of neonatal-perinatal palliative care? A Scoping review

Whilst there is a burgeoning body of research exploring parental experiences of neonatal-perinatal palliative care, a major limitation is fathers’ under-representation as research study participants. The paucity of literature relating to fathers’ experiences means there is scant evidence to guide those with a remit to support them. Understanding is needed on how fathers cope, accept loss, and grieve, and how notions of fatherhood and masculinity affect men’s experiences and support. This scoping review aims: (a) to provide an in-depth overview of the current state of knowledge around fathers’ experiences of neonatal palliative care; and (b) to understand the ways in which fathers have been engaged as participants in existing research. Seven electronic databases were searched for qualitative studies concerning fathers’ experiences of neonatal palliative care, complimented by manual searches and grey literature searches. A total of 22 studies met the inclusion criteria. Three main analytical themes were identified, arranged temporally following fathers’ experiences from the point of diagnosis to bereavement and beyond: (1) fathers’ experiences of finding out and decision making; (2) fathers experiences in and out of the care environment; and (3) fathers’ experiences of grief and bereavement. This scoping review finds that whilst the existing research provides a useful starting point for understanding fathers’ experiences of neonatal palliative care, there is a need for interdisciplinary research that explores fathers’ experiences in more depth, to inform and improve care and support available to fathers during this difficult time.