Opinion: Digital storytelling can aid families of children in palliative care to capture and preserve valuable moments and memories
By Veronica Lambert and Razieh Safarifard, DCU
Imagine a family gathered around a young child's bed at home or in the hospital, facing the heart-wrenching reality that their time together is limited. The moments they share now - the stories told, songs sung, laughter, and tears - are more precious than ever. But how can these memories be preserved, not just for the present but for a lifetime?
Memory-making activities provide a way to capture these moments, offering comfort during and after their journey through palliative care. In Ireland, the need for such interventions is growing, as more children live with life-threatening conditions and families often find themselves without adequate support in these difficult times. Our new project addresses this gap with a digital storytelling memory-making programme tailored to the unique cultural and practical needs of Irish families.
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How memory-making activities help families
During a recent consultation, a bereaved parent said "we were told at that time that there was very little they could do. My child needed palliative care and we were to go home and make memories. That term, 'making memories,' was almost overwhelming, but also deeply meaningful. The support from a local organisation helped us with beautiful memory-making activities that have left us with cherished memories."
A collaborator from a partnering children’s charity added: "I’ve seen the impact of memory-making, especially at the end of life. Our involvement in creating special memories has had a huge impact on families, providing a sense of peace and continuity."
Palliative care is about more than just managing symptoms. It’s about supporting the whole family, emotionally and psychologically, as they face the unimaginable. In Ireland, there’s a lack of programmes to help families create and preserve memories during this time.
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This is a significant gap because memory-making is more than a therapeutic activity for children with life-limiting conditions and their family communication. It’s also a vital part of the grieving process, allowing families to connect, communicate and, ultimately, cope.
The role of digital storytelling
Research has shown that memory-making activities, such as creating digital stories, can significantly enhance family communication and emotional well-being. These stories serve as tangible legacies that families can hold onto long after their child has passed, offering comfort and a way to keep their loved one’s memory alive.
Digital storytelling is a powerful tool that combines narrative, images, and sometimes even music to create a multimedia story. For families in palliative care, it offers a way to encapsulate the essence of their child’s life and the shared experiences that define their life story together. In the United States, digital storytelling legacy-making has been used successfully in similar contexts, helping families to process their emotions, communicate their feelings, and preserve their memories in a meaningful way.
Helping the child express their life journey in their own words is crucial to creating a lasting legacy
Our project aims to bring this innovative intervention to Ireland, where it can provide the same benefits to families here. Through a systematic review of existing memory-making interventions, we have identified digital storytelling as one of the most effective methods for improving psychosocial well-being in paediatric palliative care.
A different approach for Ireland
We know that what works in one country may not necessarily work in another. That’s why our team has been working closely with Irish families, healthcare providers, and international experts to adapt the digital storytelling legacy-making intervention to fit the specific needs of families in Ireland.
Through multi-stakeholder consultations, including input from parent representatives, we’ve gathered valuable insights on how to make this intervention culturally sensitive and practically feasible. These discussions have highlighted the importance of personalisation—ensuring that each family’s story is told in a way that resonates with their unique experiences and cultural background and needs. Helping the child express their life journey in their own words is crucial to creating a lasting legacy.
It's a small but powerful way to ensure that their stories live on, providing comfort and connection for generations to come
We are now in the process of refining the intervention materials through adaptation workshops. These workshops are co-led by our research team, healthcare practitioners, and patient representatives, ensuring that the final product is both therapeutically effective and culturally appropriate.
What's next?
Our next step is to conduct small-scale testing with families who are currently receiving palliative care at home. This will allow us to fine-tune the intervention, making sure it truly meets the needs of those it’s designed to help. We aim to create a tool that not only supports families during their most challenging moments but also leaves them with a cherished legacy that will last a lifetime.
Once the testing phase is complete, we will work towards broader implementation across Ireland, offering this valuable resource to more families in need. We believe that by supporting memory-making in this way, we can help families navigate their grief and ultimately find a sense of peace.
But this project is about more than just research. It’s about making a real difference in the lives of families facing unimaginable challenges. By preserving memories through digital storytelling, we offer them a way to hold onto the moments that matter most, long after their child has passed. It’s a small but powerful way to ensure that their stories live on, providing comfort and connection for generations to come.
This project is supported by funding from the Health Research Board Open Fund, in partnership with Barretstown Children's Charity. The authors acknowledge the input of the public and patient involvement contributors, whose voices have shaped this project.
Prof Veronica Lambert is a Full Professor of Children and Family Nursing at the School of Nursing, Psychotherapy, and Community Health at DCU. She is a Research Ireland awardee. Dr Razieh Safarifard is a postdoctoral researcher at DCU specialising in educational psychology.
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The views expressed here are those of the author and do not represent or reflect the views of RTÉ
