Not just there by chance: a qualitative study on continuity and quality of spiritual care in paediatric palliative care

Abstract

UNLABELLED: Children with life-limiting conditions and their families face profound existential and spiritual challenges throughout the paediatric palliative care (PPC) trajectory. While spiritual care (SC) is a recognised component of PPC, its continuity and quality across care settings remain underexplored. This study examined how SC can be organised and safeguarded across the PPC continuum, from the perspectives of parents, healthcare professionals, and spiritual care providers. An exploratory qualitative study was conducted using multidisciplinary peer consultation groups. Two groups met online in 2022-2023, discussing six PPC cases over seven sessions. Participants included spiritual care professionals, clinicians from hospital and home settings, and parents. Data sources included audio-recorded transcripts, structured case descriptions, and field notes. A modified QUAGOL approach was used for narrative-informed thematic analysis. Coding was supported with team discussions. Continuity of care (relational, informational, and managerial) informed interpretation as a sensitising framework. Two themes were identified: (1) challenges in ensuring continuity of spiritual care, including fragmented referrals, lack of coordination, and cultural disconnects; and (2) defining and delivering quality SC, emphasising relational consistency, cultural and linguistic fit, and interprofessional collaboration. Parents valued providers who "knew their story", while professionals stressed clearer referral pathways and role alignment. Gaps in coordination and information transfer constrained support across transitions. CONCLUSION: Continuity of spiritual care in PPC is not merely a logistical task but a relational and interpretive process. Embedding SC into proactive care planning and interprofessional practice may improve coordination, enhance cultural responsiveness, and support families throughout the illness trajectory. WHAT IS KNOWN: • Spiritual care is an essential dimension of paediatric palliative care but is often fragmented across settings. Traditionally, SC has been hospital-centred. • Families frequently lack consistent support during transitions between hospital, home, and community care. WHAT IS NEW: • This study suggests that continuity in spiritual care relies on sustained relationships, cultural attunement, and clear coordination. • Embedding spiritual care in proactive planning may support consistency and family-centred support throughout the illness trajectory.