The three cases also show that a high level of ethical reflexivity is required.
Unequal power relations, ongoing consent, and voluntary participation needed our
constant attention. In particular because we met our participants in locations which
they were not expected to leave, e.g. at school, in a hospital, or in their own home.
The Digital Life of Vulnerable Users: Designing with Children, Patients, and Elderly 67
We had to confirm regularly if our presence was still appreciated and their
participation was still consented. This was particularly difficult in the case with the
school children with special needs. We were often not able to explain the impulsive
behavior of some of the kids: did they tell us that they were no longer interested in
participating or was this part of their usual behavior?
Designing with vulnerable users didn’t only challenge us methodologically and
ethically. Our emotional responses to these experiences, and the physical
environments in which they took place (special education classroom, hospital, care
homes), brought out our own vulnerability. We were sometimes unsure if our
responses to unanticipated situations were the right ones. In some cases, we shared the
fact that we needed to improvise with our participants. This opened up for dialogue,
which we experienced as positive and supportive and not necessarily a weakening of
the position of the researcher or of the design process as a whole.