5.1 Concluding Remarks
In this paper, we conceptualized vulnerable users as particular groups of people who,
because of their physical or cognitive abilities, are also not able to make their voice
heard in the design of their digital lives. We presented participatory design work with
three groups of vulnerable users and described some of the methodological and
ethical challenges we experienced. The particular design contexts of our study
required us to adapt our participatory design approach. In order to make sure that we
would continue to ‘hear the participants’ voices’ – to design with them, not only for
them – we needed to develop a reflexive sensibility. This sensibility focused our
design efforts as well as broadened our interpretative frame when we were confronted
with situations and behavior that we found difficult to explain.
Acknowledgments. We would like to thank our graduate students, Anna Karpova and
Margaret Machniak, as well as the students from the Kamfer and Selskap projects for
their contributions to this study. We would like to thank all the participants for their
interest, time, and participation. We also thank the Children’s Hospital of Eastern
Ontario (CHEO) and Khaled El Emam of the Electronic Health Information
Laboratory (Ottawa) for their support. A component of the study is implemented as
part of the research project Autonomy and Automation in an Information Society for
All, which is funded by the Verdikt Program of the Norwegian Research Council
(project number 193172).