Background: Children’s Palliative Care is a growing global health concern. With rising numbers of children with life-limiting/life-threatening conditions, many more children and their families will require palliative care in the future. Legacy support for children and bereavement support for families of children living with life-threatening conditions receiving palliative care at home are currently lacking in Ireland. This research will address this deficit.
Aim: To systematically adapt a US digital storytelling legacy-making intervention integrating Barretstown’s unique model of therapeutic recreation to tailor the intervention to the Irish context, and to determine the feasibility and acceptability of the adapted intervention to families of children with life-threatening conditions receiving palliative care at home.
Method: Drawing on the ADAPT guidance for adapting and transferring interventions we will use multiple methods to engage with a variety of stakeholders across three iterative work-streams including: (i) consideration of the intervention-context fit to inform judgements on transferability and decisions on the nature and extent of adaptations required to replicate the US digital storytelling legacy-making intervention in the Irish context, (ii) agreeing and undertaking the required intervention adaptations as well as co-producing adapted intervention manuals and materials and training the intervention delivery team, and (iii) conducting small-scale testing of the adapted intervention to understand the feasibility and acceptability of the adapted memory-making intervention for families of children with a life-threatening condition receiving palliative care at home.
Conclusion: This study will determine whether an adapted digital storytelling memory-making intervention is feasible and acceptable to families of children living with a life-threatening condition receiving palliative care at home in Ireland. The findings will provide important information to inform further modifications to the adapted intervention. This will inform further evaluations, including larger scale effectiveness, of the adapted intervention. Findings will directly impact on Barretstown’s decision making to expand their outreach programmes.
