• Corpus ID: 204910272

Youth with ME/CFS: Untangling Complexities in Technology Design to Support Everyday Living

@article{Brsting2018YouthWM,
  title={Youth with ME/CFS: Untangling Complexities in Technology Design to Support Everyday Living},
  author={Jorun B{\o}rsting and Alma Leora Cul{\'e}n},
  journal={International journal on advances in intelligent systems},
  year={2018},
  volume={11},
  pages={1-12}
}

• Jorun Børsting, A. Culén
• Published 30 June 2018
• Computer Science
• International journal on advances in intelligent systems

In this paper, we argue that the technology design needs to take a more holistic perspective, beyond opportunities offered by the technology development alone. This is especially important when developing technologies for complex contexts, such as healthcare, and for users who are at risk. Furthermore, we present a sense-making process, informed by tools and methods from social science, complex systems design and design thinking, and intended for human-computer interaction designers and researchers to broaden their understanding of entanglement of technology, users, and the design context. This is particularly important when working in a new application area, where one is not an expert. We illustrate our approach by exploring if and how digital tools could support youth with Myalgic Encephalomyelitis (ME), also known as a Chronic Fatigue Syndrome (CFS), to better cope with everyday challenges. Informed by previous research related to our field of inquiry, we combine ethnographic research, Actor-Network Theory adapted for design, and Giga-mapping (a complex systems design technique). We find that this combination of methods and techniques supports deeper reflections over the domain complexities, and makes it easier to avoid designing technologies for adolescents with ME/CFS that do not offer real support in day-to-day living. Keywords-complex systems; sense-making; ME/CFS; ANT; healthcare; design thinking.