Improving children’s hospice care through innovation
Every day, around 360,000 babies are born around the world. The large majority will lead long, healthy lives into adulthood. Sadly, a minority experience a very short life due to illness or live with a long-term or life- limiting disease. For these children, palliative care can transform their experience, helping them live with an enhanced quality of life, while also supporting their family and friends.
Paediatric palliative care is an active and total approach to care, from the point of diagnosis, throughout the child’s life, to death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on improving the quality of life of everyone involved. It includes the management of distressing symptoms, care at the end of life and bereavement support. Children’s hospices provide the most comprehensive paediatric palliative care. But globally, there is a chronic lack of them. The demand is high yet hospitals and other organisations have limited resources and capability to offer holistic care required.
Thanks to advances in healthcare more children now survive their illness for longer, and live to adulthood. This means there is a greater need to act systemically about how hospice care is delivered. Developments in technology and changes in care delivery mean that the hospice service itself moves beyond the walls of a building, into the community. With this evolution in mind, what does innovative children’s hospice care look like now and in the near future?
At the Helix Centre, we researched and built prototypes that help to define the future of children’s hospice care, for a brand new children’s hospice being developed by Fondazione Seràgnoli near Bologna in Italy. We believe hospice care that can use design and technology successfully and meaningfully can transform the way professionals deliver care, and significantly improve the care experience for patients and their families.
What we did
Collaborating with renowned architects Renzo Piano Building Workshop and the design studio Dotdotdot, we supported the development of this new hospice experience – from the moment a family is engaged with the service, to when they may transition after the death of a child. This unique collaboration ensured that all aspects of the experience – from the physical environment to the integration of clinical and social care – was designed to the highest standard.
So far we have developed four prototypes that respond to the relational, situational and holistic needs of children and families. Our first prototype, The Connected Garden, fused principles of horticultural therapy with meaningful uses of technology, to create interactive living plants that enable children and their families to engage in cooperative play. In doing so, we hope to enable and support accessible use of a garden space for every visitor and patient of the hospice.
While the second Chiara, an AI-powered chatbot, provides parents with personalised information they might need to get the right support from the right person, at the right time.
Our third prototype in the project was in many ways the most sensitive so far. Moments is a digital platform for parents, and the people close to them, to help build and hold a safe space for memories of a child.
Our fourth prototype, Bake, was another experimental technology prototype. As an augmented reality (AR) role-play therapy prototype for the iPhone, Bake enables a child to pick ingredients and build a recipe to bake a cake using just their head and eyes. As an activity using established play therapy frameworks, it was designed for children with normal cognitive abilities but poor or little physical abilities.
We also published a report that examined the state of Children’s Palliative Care (CPC) worldwide. It set out an “unashamedly optimistic” vision for how to radically improve the levels of care for the rapidly growing number of children around the world with life-limiting conditions.
The children’s palliative care provider of the future: A blueprint to spark scale and share innovation outlines nine critical features of CPC services. This includes physical, emotional, and social support for children and their families to ensure the best possible quality of life.