Memory-making through therapeutic recreation. Adapting a digital storytelling intervention for families receiving palliative care at home
Research Project Title
Memory-making through therapeutic recreation for families of children with life-threatening conditions receiving palliative care at home: Adaptation of a digital storytelling legacy intervention
KeyWords
Memory-making, digital storytelling, therapeutic recreation, children’s palliative care
Challenge
Currently in Ireland there is limited early bereavement support for families and specifically a lack of support for children with palliative care needs to record memories with their families. With rising numbers of children living with life-limiting and life-threatening conditions, there is an increased need for child and family palliative care and early bereavement supports in the future. Memory-making interventions are increasingly recognised as important to assist children and their families to make meaning out of experiences, and such interventions may have positive effects on family communication and bonding, coping and grieving, and creating tangible memories for families. This project will provide the opportunity to explore early bereavement supports for children needing palliative care to record their life stories, plan for end-of-life with their families and provide support when the family is bereaved.
Research Project aims and methods
The aim of this research is to adapt a digital storytelling memory-making intervention from the United States for families of children with life-limiting and life-threatening conditions receiving palliative care at home in Ireland.
This research project will be carried out in three key phases where the research team will:
- Review how digital storytelling is used in the US and work with stakeholders and families to map similarities and differences between the US and Ireland. This will help us to understand, agree and make any changes needed to use digital storytelling in Ireland.
- Adapt the manuals and training materials for the team in Barretstown and test the way digital storytelling could be delivered in Ireland with families receiving palliative care at home. This will help us to understand how easy it would be to use digital storytelling in practice and if it supports families.
- Evaluate any potential early benefits to families, such as how they connect and communicate, create memories and prepare for death. Created by families for their family this will provide a tangible digital story to keep.
This research will support children needing palliative care to record their life story, plan for end-of-life with their families and provide support when the family is bereaved.
This research will inform future evaluations of digital storytelling and will influence Irish healthcare and our national strategic goals to enhance early bereavement support for families of children with life-threatening conditions receiving palliative care at home.
Public, patient and personal involvement (PPI)
Active engagements with our parent co-applicants and collaborators were influential in conceptualising and prioritising the study focus. Oversight of our public and patient involvement (PPI) activities at each research stage will be co-led by our parent co-applicants, who will co-chair our PPI Expert Advisory Panel (EAP). The PPI EAP will ensure the adapted intervention, recruitment materials and processes, and our knowledge exchange and dissemination approaches are meaningful, sensitive, accessible and relevant to children and family members.
Our PPI activities will include hosting a series of workshops with our PPI EAP throughout the study focusing on:
(i) co-creation of a project title/acronym/logo as appropriate;
(ii) determining the intervention adaptations required in terms of structure, content, format, delivery preference, including terminology use;
(iii) co-producing the adapted intervention manuals and associated materials; (iv) dialoguing around how to introduce the intervention to families and designing family-focused sensitive recruitment materials, information leaflets and assent/consent forms;
(iv) trouble-shooting findings from testing the intervention with families to inform and identify solutions for future adaptations;
(v) co-designing lay summaries to disseminate study findings and co-facilitation of other knowledge exchange events to help make the research more relevant, accessible and useful to end-users
New Research Outputs
The research team for the Memory-making through Therapeutic Recreation project, which is adapting a digital storytelling intervention for families receiving palliative care at home, has now progressed through all major stages of adaptation, training, and small-scale feasibility and acceptability testing.
Multi-stakeholder consultations are complete, providing essential insights into cultural sensitivities, ethical considerations, and logistical needs within the Irish context. Following this, adaptation workshops were conducted with Barretstown’s Camp at Home delivery team, drawing from their extensive experience of Barretstown’s Therapeutic Recreation Model.
Through a combination of multi-stakeholder meetings, PPI input from bereaved parents, and iterative workshops with the Barretstown team, the research team has now finalised the adapted intervention manual. To support high-quality delivery, Barretstown delivery team members and DCU researchers completed professional digital storytelling training with StoryCenter (USA), as well as bereavement-informed psychological training with an expert clinical psychologist.
The scholarly article documenting the full adaptation process, Digital storytelling as a memory-making intervention for children and families in paediatric palliative care in Ireland: an adaptation study, has been published in Frontiers in Public Health. 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.
Following adaptation, the Barretstown team delivered the intervention with two mock-up families to refine practical processes and session flow. Subsequently, they conducted small-scale feasibility and acceptability testing with eligible Camp at Home families. In total, the intervention has now been delivered with five families. A second research article reporting findings from this feasibility and acceptability testing is also under review for publication.
Knowledge Exchange Event
In December 2025, the project team hosted a Knowledge Exchange morning at Barretstown, bringing together DCU researchers, Barretstown programme staff, and key national stakeholders in children’s palliative care, hospice and bereavement services, and policy.
The event provided an opportunity to:
Share the journey of adapting the digital storytelling intervention, including the rationale, methods, and early learning from families and staff
Present Barretstown’s experience of delivering the intervention through the Camp at Home programme
Showcase how the intervention is being embedded within Barretstown’s service pathways, including links to other programmes
Facilitate a panel discussion on future directions, including scaling, referral pathways, staff training needs, evaluation priorities, and opportunities for wider collaboration
The programme concluded with a networking lunch and optional site tour. The Knowledge Exchange event strengthened relationships across the sector and supported national dialogue on integrating memory-making supports into Irish children’s palliative care services.
Timeline
The project started in January 2024 for the duration of 24-months, until December 2025.
Research Team
Our team includes a collaboration between researchers at Dublin City University, public and patient involvement contributors, and knowledge users at Barretstown Children’s Charity. The team is led by principal investigator and lead researcher Professor Veronica Lambert, Dublin City University, and our lead knowledge user Dee Ahearn, CEO, Barretstown Children’s Charity. The full team is listed below.
Researchers
- Professor Veronica Lambert, School of Nursing, Psychotherapy and Community Health, Dublin City University
- Dr Gemma Kiernan, School of Nursing, Psychotherapy and Community Health, Dublin City University
- Dr Yvonne Corcoran, School of Nursing, Psychotherapy and Community Health, Dublin City University
- Dr Eileen Courtney, School of Nursing, Psychotherapy and Community Health, Dublin City University
- Dr Fiachra O’Brolchain, School of Theology, Philosophy, and Music, Dublin City University
- Dr Razieh Safarifard, Post-doctoral Researcher, School of Nursing, Psychotherapy and Community Health
Public and Patient Involvement Contributors
- Mrs Sharon Thompson, Public and Patient Involvement Contributor
- Mrs Maria Bourgon Lacasa, Public and Patient Involvement Contributor
Knowledge Users
- Ms Dee Ahearn (Knowledge-User Lead), CEO, Barretstown Children’s Charity
- Mr John Mitchell, Barretstown Children’s Charity
- Ms Shoni Tavendale, Barretstown Children’s Charity
- Dr Peter McCarthy, Barretstown Children’s Charity/Children’s Health Ireland at Crumlin
- Dr Peter Hanlon, Barretstown Children’s Charity
Collaborators
Our team is supported by a number of national and international collaborators, as follows:
- Dr Terrah Akard, Associate Professor of Nursing and Medicine, Vanderbilt University, USA
- Ms Karen Charnley, Director, All-Ireland Institute of Hospice and Palliative Care
- Mr Maurice Dillon, National Lead for Palliative Care, HSE and Co-Chair of Children’s Palliative Care Strategic Advisory Group
- Ms Michelle Hartnett, Senior Play Therapist, Laura Lynn Children’s Hospice
- Ms Orla Keegan, Head of Education & Bereavement IHF / Honorary Lecturer RCSI, Irish Hospice Foundation
- Dr Peter May, Assistant Professor of Public Health and Primary Care, TCD
- Ms Jane McKenna, Founder, Laura Lynn Hospice Foundation
- Professor Graham Moore, Professor of Social Sciences & Public Health, Cardiff University, Wales
- Ms Sinead Moran, Specialist Children’s Liaison Nurse Manager, Jack and Jill Children’s Foundation Ms Elaine Smyth, Children’s Cancer Coordinator, Irish Cancer Society
Funding & Support
This research is funded by the Health Research Board Applied Partnership Award [Grant Reference APA-2022-016] with additional co-funding from Barretstown Children’s Charity
For Further Information Contact:
For further information contact Professor Veronica Lambert
Email: veronica.lambert@dcu.ie
Twitter handle: @VLambertDCU