Jeroen Pithuis

How can we create an accessible, ambient and well-connected (digital) solution that supports and empowers families of children with medical complexities (CMC) during the transition from the hospital to home?

Families of children with medical complexities tend to spend quite a bit of time in and around Emma Kinderziekenhuis – the children’s department of the Amsterdam University Medical Center (Amsterdam UMC). Emma Kinderziekenhuis is one of the most specialised hospitals of the Netherlands and therefore, healthcare provided within the confines of the hospital is usually excellent. However, some problems start occurring once these families return to their homes, when the responsibilities of care taking shift more towards the parents. Often, parents find themselves in a complex maze of different institutions, initiatives, and other systems that continue to provide healthcare after the child has returned home. This ‘coordination or care’ tends to turn into a fulltime job for parents that can cause a lot of long-term stress: The lack of overview makes it unclear who is responsible for what, parents often need to learn how to take care of their child through trial and error, and they need to balance the monitoring of such complex tasks with ‘just being’ a parent.In order to support and empower these families, our team is currently developing a tool that enables dialogue, in which parents can share their experiences both with each other as well as with various healthcare providers. The challenge is not to provide these families with more information – in fact, the problem might be that there is too much information out there to begin with. Rather, the incentive is to get them on the same page – in other words, to use insights from all these different ‘worlds of thinking and doing’ to create solutions together.

This project focuses on Sustainable Development Goals: