I’m a designer working to make hospice care better for seriously ill children and their families. Ask Me Anything
Hi Reddit! I’m Ivor Williams, Senior Design Associate at the Helix Centre at Imperial College London.
I lead the end-of-life care projects at the Centre, exploring British hospice care and taking a human-centred design approach to unlock the potential of technology to support seriously ill children and their families.
Hospices provide holistic care for children, young people and adults from the point at which their illness or condition is diagnosed or identified, all the way through to the end of their life, however long that may be. Common misconceptions of children’s hospice care are that they are very sad places and are only for children who have a very short time to live or who are likely to die. On the contrary, hospices are incredibly life-affirming spaces, full of positivity and light, offering support to children with a variety of diseases and conditions, sometimes for long life spans.
I firmly believe design can both improve the quality of life of those living with life-limiting or life-threatening diseases and their families, as well as play a role in shifting perceptions of hospice care.
A bit of background
Research and innovation in children’s hospice care are underdeveloped, largely because the diseases and conditions which require hospice care are often very rare, and so the evidence base is lacking.
Breakthroughs in medical treatments in recent decades mean children are living longer with difficult conditions, which is a great thing. However, this also means the complexity and needs of children requiring hospice care are growing. We need new processes to respond to those needs, and for their families.
About my work
I work at the Helix Centre – an innovation lab working at the heart of healthcare – which is an integral part of the Institute of Global Health Innovation. Along with colleagues who work in health policy and design, we are trying to unlock the potential of technology to create products, services and experiences in hospice care, such as peer support programmes, advance care planning, memory-making and legacy. I work with other designers, technologists, academics, children and families to see what exists and then use design methods and processes (such as prototyping and workshops) to come up with creative solutions to those needs.
Case study: Chiara chatbot
As an example, we created a prototype service for parents who care for their children at home. We understood from families that without the support of a hospice, the experience of 24-hour care is endlessly exhausting and they can become quite isolated without proper support. The hospice can act as a great connector to professionals and other family groups. So, we developed a technology prototype, Chiara, which used a conversation agent (‘chatbot’) to identify the needs of the child and the family and suggest personalised recommendations to groups and services in the hospice. We worked with a leading charity to test and iterate the prototype with families. It is just one of many prototypes we’re creating at the Helix Centre.
Profile page: https://www.imperial.ac.uk/people/ivor.williams
Project case study: https://helixcentre.com/project-childrens-hospice
About the Helix Centre: https://helixcentre.com/
UPDATE [1PM ET / 6PM BST]: Thanks very much for your great questions everyone. I’m heading off for now but will be checking back in tomorrow, so please do submit any more questions you may have.
And a big thanks to r/IAmA for hosting this AMA!