Digital storytelling as a memory-making intervention for children and families in paediatric palliative care in Ireland: an adaptation study

TL;DR

This study adapts a digital storytelling intervention for Irish children and families in palliative care, focusing on meaningful, culturally sensitive engagement.

Contribution

The study presents a culturally adapted digital storytelling intervention tailored for Irish pediatric palliative care settings.

Findings

Six key principles were identified for the adapted digital storytelling intervention.

Co-production and cultural fit are critical for implementing psychosocial interventions in palliative care.

Training materials and a manual were developed to ensure fidelity and safety in intervention delivery.

Abstract

Memory making is a core component of holistic paediatric palliative care. However, traditional artifact-based keepsakes (e.g., handprints) are often passive and lack the developmental and cultural sensitivity needed for meaningful engagement. A more participatory, narrative-based, multimedia approach, such as digital storytelling, is therefore required. Following the ADAPT framework (Steps 1–2: Intervention-Context Fit and Planning Adaptations), this study adapted a U.S. developed digital storytelling intervention for children with life-limiting and life-threatening conditions and their families in Ireland. Methods included a literature review, stakeholder consultations (n = 21), co-production workshops, and the development of a facilitator training programme and delivery manual. The adaptation team comprised diverse stakeholders, including paediatric palliative care clinicians, creative practitioners, bereaved parents, and representatives from national children’s palliative care organisations. The adaptation, conducted in partnership with Barretstown Children’s Charity, yielded six key principles for the final intervention: emotionally safe framing, family and sibling inclusive design, flexible and multimodal participation methods, selective integration of therapeutic recreation, family-led pacing and facilitator preparedness. The final design incorporates play, visual, and audio elements to support meaningful, co-created engagement from all family members. Comprehensive training materials and a facilitator manual were developed to ensure fidelity and safety. This adaptation study presents a culturally and developmentally resonant digital storytelling intervention for Irish paediatric palliative care. Findings highlight the critical role of co-production, cultural fit, and emotional flexibility in successfully implementing complex psychosocial interventions for this population. Future pilot testing will evaluate the intervention’s feasibility, acceptability, and psychosocial impact.

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