Empower young experts

Abstract

The Child Brain Lab (CBL), a part of the Paediatric Brain Centre at Sophia Children’s Hospital within the Erasmus Medical Centre, is a scientific research and testing facility dedicated to children with brain conditions (CB). These children frequently experience isolation and lack of social contact due to their situations. These observations lead to the following research question, “How can design empower participants aged six to eighteen in the Child Brain Lab to use peer-sharing for preparation and support during their visits effectively?”

As CB frequently visit the hospital and are familiar with the medical setting, a CBL visit does not trigger much stress. So, it became clear that the main challenge was not solely to reduce stress but to empower these children to share their experiences, gain control, and connect with their peers. The CBL provided an ideal opportunity to address these needs as it aims to test hundreds of CB annually. CB did express a desire to be informed about procedures and often felt alone during hospital visits.

Several key findings were established from this research. Firstly, it became clear that children with brain conditions (CB) have unique knowledge from their personal experiences and are therefore experts in the area of their condition. Secondly, these children have a strong desire to help others and to learn new things. In addition, a number of barriers were recognised that CB often face, including limited information and empathy that does not meet their needs. To address these challenges, the approach focuses on creating a safe and supportive environment for peer interaction, bridging information gaps and simplifying complex medical language, by equal communication.

As a result, the design goal is to empower participants of the CBL to recognise their expertise and support them to express their experiences and share them with their peers.

These findings led to Lab Maatjes, a peer-sharing app tailored to the CBL journey. It was designed around the principles of self-determination theory. For autonomy, the app allows users to explore what CBL involves and why it is important. It also offers guidance and support to navigate the app and express themselves independently. It promotes competence by allowing them to share their stories, feel heard and seen, and gather the information they want to know. Finally, it provides relatedness by creating a trusted environment where they can connect with peers and gain insight into their experiences and how they relate to their views. Lab Maatjes creates an engaging preparation process that puts participants in control, makes them feel valued for their contributions to the CBL and ensures that they do not feel alone as they connect with peers.

This thesis concludes with an evaluation of the app, using the feedback of the CBL participants for quick iterations. The final sections of this report identify areas for improvement and recommendations for implementing the design, including creating two versions of the app for different age groups, implementing advanced features such as audio recording, and doing more research on the sharing behaviours of the participants.