Sense-Making in Complex Healthcare Domains: The Role of Technology in Every Day Lives of Youth Suffering from ME/CFS

In this paper, we argue that the technology design needs to take a more holistic perspective, well beyond opportunities offered by the technology development alone. This is especially important when developing technologies for complex domains, such as healthcare, and with users who are at risk. We propose a sense-making process that helps humancomputer interaction researchers/designers to develop a broader understanding of such complex domains in which they often have no expert knowledge. We exemplify our approach by exploring the complex domain related to the design of technologies that could support youth with Myalgic Encephalomyelitis to cope better with their situation. The approach is based on a combination of user research, Actor- Network Theory adapted to the design context, a complex systems design tool (Giga-mapping) and a literature review. We find that this approach leads researchers to reflect deeper over the domain complexities, and to avoid solving problems that do not untangle complexity or lead to real-life solutions. Our conclusion is that such initial sense-making processes are fundamental when considering the design of new technologies for healthcare, and with vulnerable users