The brain self portrait

Abstract

This master thesis tackles the questions: How to involve child patients in their clinical tests and their test results in a child-centred way? How to enable and encourage them to participate in the discussions around their care?
It focuses on the not yet existing (July 2020) context of the Child Brain Lab, a clinical research project that is being set up at the Sophia Children’s Hospital. Here, child patients will undergo a wide variety of tests related to their brain that will take up several hours of their time. Their test results will then be discussed by the clinician and the child-patient family. Without the right supporting design, the Child Brain Lab (CBL) is subject to many of the issues that child patients generally face: Not being able to comprehend the conversations between parents and doctors, not getting the chance to voice their own needs and opinions and suffering anxiety about if, how and why clinical tests will be conducted. This project started with a broad context analysis. This included reviewing the literature, observing consultations, and interviewing a variety of healthcare professionals and child patients. This analysis revealed many possible reasons why child involvement is often limited. For example, it was found that by default, the child patients themselves typically take a rather passive role in discussing their care. These insights were then translated into design drivers that inspired several iterations of design ideas. Consequently, these ideas were used to learn from by discussing them with all main stakeholders of this project. This sparked a second iteration of design drivers that ultimately lead to the brain puzzle concept.
The brain puzzle concept is a collection of avatar-based, personalized puzzle pieces the child patient collects as it goes through the CBL. Each piece comes with a different function and serves a different phase of the CBL experience: The first type of pieces shows the sequence of tests that will be conducted while the second type shows which brain functions those tests investigate. Before the consultation, the child patients also receive an indication of their test results in the form of stickers, which can be placed on the corresponding puzzle piece. With these stickers, both the clinicians and the children can indicate which part they want to discuss. These pieces are then brought to the consultation as a discussion tool and to structure the conversation with more regard for the child’s perspective. To evaluate this concept, a prototype was made and evaluated with child-patients, their parents, and their clinicians in over 17 interviews. The results show that the participants were unanimously positive about the overall design and they would like to see it being implemented. Especially parents and clinicians indicated that the concept would playfully guide the children through the CBL and enable them to discuss what they want to discuss. This thesis concludes by listing areas for improvement of the concept and discusses those in the broader context of informing children about their test results.