Abstract:

This study examines how care is expressed and practiced during the co-design of wearable healthcare technology for children with Rett syndrome (RS), a rare neurodevelopmental condition that severely affects communication, movement, breathing and other basic functions from early childhood. Although not degenerative, RS requires lifelong care, making supportive technologies especially important. While co-design approaches are increasingly used in health care innovation for children with RS, little attention has been paid to how care itself is embedded in these collaborative design processes. To address this gap, the study draws on Tronto's ethics of care and Hamington's integration of care ethics with design thinking, to explore how care is enacted, supported, and constrained throughout the development of wearable health technology. The study focuses on a year-long interdisciplinary project to develop a smart wearable device for children with RS. Using an abductive qualitative approach, the authors collected data through interviews with both parents and technical experts, survey of families, and participant observation of design sessions and meetings. Analysis followed grounded theory methodology. Preliminary findings identify five main ways care appears in co-design. These five aggregate dimensions illustrate how care is embedded in both relationships and design activities, highlighting the importance of emotional understanding, shared knowledge, and realistic expectations in collaborative healthcare innovation. The analysis is ongoing, with additional aggregate dimensions and underlying themes still being explored.

Please choose your submission type: Developmental Paper

Primary Track: Project Experiences

Keywords: Project performance;Project Work;Responsible Project Management

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Dr. Maryia Zaitsava