Designing interactive technology (IT) for/with children with T1DM: exploring methods, techniques and tools facilitating participatory approach

The central question of this thesis is: How to design Interactive Technology (IT) for/with children with Type 1 Diabetes Mellitus (T1DM) and their parents/guardians? To address this question, this research has two main goals: firstly to gain a deeper understanding of paediatric diabetes everyday care experienced by children and parents in domestic environments and to identify an application area to explore the potential role of IT in supporting (some) self-care practice, and secondly to explore a series of collaborative user-centred and participatory design approaches in an attempt to examine the participants’ role in design and to facilitate users’ participation (e.g. children and parents) better in the technology development and design. This investigation is heavily influenced by the design process; the second goal is central to framing the contribution of this study. To help answer this thesis’ question, the investigation focuses on the four main phases of User Centred Design (UCD) (i.e. research, design, prototyping and evaluation) and explores a series of methods to investigate the role of the users in developing an IT interactive technology that may support diabetes education and sense-making in newly children and their families: Participatory Design (PD), Cooperative Inquiry (CI), and Informant Design (ID). Based on the empirical results, I stress the benefits of employing a participatory approach in the design of IT for paediatric diabetes. In particular, I highlight the limitations of the current tools supporting education in newly diagnosed children (with diabetes), and how participation in the design contributed in identifying critical areas of potential intervention which resulted in the prototyping of an educational eBook for newly diagnosed children and their families. Two clear aspects emerged from reflection on and analysis of the design process: the first is that the emotional response of affected participants was a crucial factor during design and these potential responses need to be taken into account when planning participatory design activities; the second highlights the benefit of participatory approaches based on narratives and storytelling to support participants in communicating their concepts and knowledge successfully. It also became evident that applying UCD, PD and CI by involving both parents and children as design partners was essential for the interactive technology design; their contribution to the educational content and main characteristics of the IT design was based on their distinct experience and acquired responsibilities in diabetes care (e.g. having diabetes and caring for a child with T1DM).