Our Care Team Information

CHALLENGE

How to support parents with a parent-owned, transmural (from first to secondary care) digital patient dossier which helps them to document, manage, filter and share information about their child to other involved parties during the transition from Hospital to Home?

DESCRIPTION

The Jeroen Pit House is a transitional home for children with serious chronic conditions. These are children who are regularly hospitalized for long periods of time. The transition from Emma Children’s Hospital to home is often very big and difficult. The Jeroen Pit House aims to make that transition easier and safer. The Jeroen Pit House is a building with eight homelike family apartments with direct views of greenery and water, within walking distance of the hospital. Parents can stay here with their children and family. Specialized nursing and/or paramedical care is available 24 hours a day. They will help the parents care for their child, giving them the confidence to care for their child at home later.

Parents of children with complex chronic conditions are expected to function unsolicited and unskilled in the role of nurse, therapist and/or care manager. This leads to overload and makes it increasingly difficult for them to function as a parent, partner, and as a citizen in society. Our project addresses this problem through the design of an online platform aimed at supporting and empowering parents of these children. By increasing their self-reliance in the provision and coordination of care, parents are better equipped to perform their new role. The platform aims to manage the flow of information and prevent parents from becoming the conduit of medical information between the various caregivers and other involved parties. This will also decrease the risk of miscommunication and remove other barriers.

Often, there are many healthcare professionals and (para)medics, as well as family caregivers, social workers and other non-medical disciplines involved in the care of these children. Coordinating the actions of these caregivers is complex. There are many disconnected parts between the various institutions and stakeholders. An enormous burden falls on the shoulders of the parents. As a result, there is little room for them to actually ‘parent’ and allow normal life to go on. The needs of family members are often neglected and for the parents it is difficult to maintain social contacts and hobbies or -in some situations -even keep their jobs.

The goal of this project is to support parents during this difficult period by providing them with digital tools that can help them control the complex care for their child. These tools should support them to become more self-reliant in the control over the care for their child, thus improving stability for the child and family. We want to provide them with a platform that offers tools that enable the parents to manage everything that is happening around their child, a platform that provides an accessible and clear tool for parents and the professionals and institutions involved to organize the care together. In doing so, we can better support families of children with serious chronic conditions, especially after hospitalization, so that they can better fulfill the complex roles in their family, their private lives and in the care of their child.