"Enabling Families to Find Their Own Path" - A Narrative Exploration of the Role of Social Workers When a Child is Receiving End-of-Life Care in Hospital.

Abstract

Social workers are frontline professionals providing psychosocial care to families when children are receiving end-of-life care. To explore the social work role in this context, data was collected from a cohort of 12 social workers employed at a national children's hospital in Ireland, via three focus groups, with four participants in each group. A two-part narrative process elicited social workers' stories of end-of-life care, facilitating the recounting of experiences in the first part of the focus group and allowing the researcher to explore issues raised, in the second part. Following thematic analysis, an overarching theme "enabling families to find their own path" emerged, with four sub-themes: a) engaging with families and navigating across boundaries; b) mediating end-of-life care; c) negotiating competing discourses; d) enabling preferences to minimize regrets. The theme and sub-themes provide insight into empowerment of families at this critical time. The use of a narrative approach facilitated the emergence of knowledge about how this is achieved in a hospital setting. This article maps the essential components of practice identified in the study and charts the key contribution that social workers make in supporting families, with the purpose of informing future practice within this field.