Value-Sensitive Design Generation with Stakeholders for Perinatal Life Support Development

Juliette Stephanie van Haren, Angret de Boer, Jan Heyer, Katie Verschueren, Tamara Hoveling, Marlou Monincx, Rooske van Loon, Emma L. Reiling, Sylvia A. Obermann-Borst, Panos Markopoulos, Rosa Geurtzen, Mark Schoberer, E. Joanne T. Verweij, Frank L. M. Delbressine, M. Beatrijs van der Hout-van der Jagt

Artificial Placenta and Artificial Womb (APAW) technologies are being developed to improve outcomes for extremely premature infants. Before such technology can be advanced to human trials, disparate challenges need to be addressed, spanning from technological issues that are addressed through functional prototypes to implementation challenges that require the definition of suitable procedures, as well as ethical issues for which public awareness and engagement are necessary. To involve future users and other stakeholders in the design process, we use a value-sensitive design approach. We advocate for an integrated approach that combines insights from the medical and technical fields with those from medical ethics, parent advocacy groups, and public opinion. Using a tripartite methodology, combining non-functional design prototypes, surveys, and (focus group) interviews, we collect a list of concerns, values, preferences, and design prerequisites. Values discussed included those related to safety, a nurturing environment, monitoring and intervention, parent-infant bonding, family-integrated care, and visceral aspects. Our results highlight how stakeholder involvement can make values more explicit and help formulate design requirements, as well as steer design processes. Our study demonstrates how applying a value-sensitive design process throughout APAW technology development enables stakeholder involvement to address implicit user needs, such as affective needs, early in the technology development.