Parental narratives on children’s palliative care: the what, where and how?

To obtain parent’s perspectives surrounding the where; the what, and the how of children and young people’s palliative care in relation to place of death? The research was conducted within the context of a small island. A limited number of studies have focussed on how and why decisions are made regarding CYP place of death. The need for further research in the context of where care is provided has been made due to differences in how services are delivered and, the variance in numbers of CYP requiring services. A purposive sampling strategy was applied to obtain the narratives from five parents; four Mothers and one Father the children had received palliative care. The study was of qualitative and interpretative design using unstructured in-depth interviews followed by thematic analysis of the narratives. The analysis revealed eight themes as having an influence on place of death; difficult conversations, parental expertise, pragmatism and fear, social positioning, barriers to parenthood, need for flexibility, normality and concern for siblings and moving on. The dynamics of family are the main determinant in parental decision making on ‘place’ for CYP palliative care where; the need for neutrality and space to care may be the overriding need. The duality of the parent role can present as a barrier to mother/child relationship. Families choosing home as the ‘place’, require information and support to make decisions that may have a longer-term impact on siblings and wider family as a whole.