Memory-making through therapeutic recreation - The Palliative Hub Professional

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

Timeline

Project planning started in January 2023. The anticipated start date for the project is May 2023 for the duration of 24-months, until April 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

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