26-04-2018
In the database, this interview can be found as:
Audio_Interview_26-04-2018_Shireen_CommentsOnMyDayLight Description: In this interview, that takes approximately 30 minutes, the researcher discusses the preliminary feedback provided by Gerd after the first two days of testing MyDayLight. Furthermore, Shireen is asked from her expertise to reflect on concerns
regarding the effectiveness of the system, the co-design trajectory and preliminary means for which MyDayLight might prove to be useful. autism and its challenges are central topics throughout this interview.
Conversation Course: The conversation starts with the researcher asking Shireen what her job is at Karakter, centre for child- and youth psychiatry. Shireen replies by saying she is project leader for innovation. Subsequently, it asked what the connection is with Gerd. Shireen replies that she does not yet have a connection with him as he is not a client of Karakter. However, when the previous potential user in the project had to withdraw his participation, she asked a young man with autism if he new anyone that could possibly be interested in participating in this research. Via him, it had gotten to her attention that Gerd would be someone that was willing to participate. The first time she saw Gerd was together with the researcher at the appointment the Friday before. When asked about Shireen’s role in this project, she states that she considers herself to be an advisor and a facilitator.
Furthermore, she aims to support the researcher in finding his way in the world of autism and in analysing qualitative data. She calls herself a sparring partner.
The researcher then asks Shireen if, to her knowledge, there would already be something where the usage of MyDayLight would be useful. Shireen replies negatively: autism is a spectrum and it cannot be more personal for what means users would want to use MyDayLight. Some people on the spectrum would need MyDayLight to keep their attention in place, whereas other would need it for the opposite. They need to have their attention taken away from something. Some people need to bring structure to their life and some need to deconstruct it. Some people also might to use it for trying new things. She exemplifies this with the disability to stop gaming. She concludes that she cannot already think of means for which MyDayLight could be used. She also expresses that this is what she likes about the project: ideally, at the end of the project, those means are better identified. Thus, as it clear as the challenges are already recognizable, it is not yet clear how
MyDayLight can provide them with a clear and unique way to overcome these challenges. Shireen also expresses that talking to multiple users would enrich this research. The
in the area of telemedicine is of paramount importance. Shireen also expresses how she, as psychiatrist, used to be afraid of technology, but she now sees that it is nothing to be scared of and it is also something that everyone has to deal with, whether they like it or not.
Another question that is posed by the researcher is whether or not the researcher already has concerns about the system not being able to become effective. Shireen replies positively. She things it is a pity that it is not portable. It is attached to the home situation. Furthermore, she believes that is would be better if there was a live connection between the interface and someone monitoring him. She believes the strength of connecting people can be very important. Shireen also starts thinking out of the box and mentions an intelligent functionality where the user can interact with the system. If the user then fails to conduct an activity, they can share with MyDayLight why he is failing to do so. A conversation should be possible. Subsequently, quite off-topic though, Shireen explains that she found it moving to see the interaction between the researcher and Gerd. The researcher, being of similar age, was clearly working hard towards an ambitious future, whereas Gerd was clearly limited by having autism.
The researcher then asks Shireen what he needs to consider whilst co-creating with users with autism. It can be advice. Shireen then explains that the researcher also has to consider the effect that the research can have on Gerd. In this way, the researcher is also functioning as a supervisor as he is having interventions with Gerd. The latter should also be clearly-described in the thesis. Lastly, Shireen explains that it is important that the researcher must not address unrealisable design opportunities proposed by the user with a negative approach, but rather a nuancing approach. Shireen then recalls Gerd expressing during the first meeting that he really wants to flirt with girls and have sex. Instead of instantly saying that the lights would not be appropriate to help him with achieving this, it should be wondered if the lights really would not be able to help him with flirting. Shireen then states that it could be, for example, planned in the interface that everyday at a certain hour he needs to go onto the streets to find a girl and flirt with her. The researcher than implies that this is something to steer the user towards, but also mentions that such steering would really become an
intervention. Shireen explains that it depends per user how much the user needs to be steered into a certain testing behaviour. The researcher then mentions that, through an intervention, it should also be clearly considered how much of the changed behaviour in organization and attention at the user’s side is due to MyDayLight and how much is due to the intervention-characterized conversations held with the researcher. This is a piece of qualitative research that should be clarified in the thesis. Shireen, however, advises a steering and slightly-subjective role for the user in the research.
The subsequent topic that arises is the communication between the researcher and the user. Shireen and the researcher anticipate what effect the communication could have on Gerd. Naturally, it could be the first time that Gerd will have contact with someone at least every day. Will he like it or will he not? He did seem enthusiastic during the first meeting, though, both Shireen and the researcher agree on this. The researcher supports this claim that he started with using the system instantly once it got installed in his apartment.
The next topic that arises is a personal idea by the researcher: instead of having an intrusive tune installed as the extra notification, the user should have the freedom to simply record whatever they wants. This could be the voice of a supervisor; it would be very natural in the user’s context and add the MyDayLight as being designed for embodied
empowerment. The researcher also shows a first interface of his design idea. Shireen seems to be very enthusiastic: it is very personal! The researcher, by the way, justified the idea of adding sound to the interface by having a previous conversation with Jelle in which it was discussed. Arjan, Toby and Gerd had all already mentioned that sound would be added value to the system. This is something that has to be analysed, though.
Interesting Points: An interesting topic cut into during this interview was the question whether or not MyDayLight could be an appropriate system for activating Gerd into flirting and meeting girls. Such an activity perfectly resembles the necessity of this research: it is completely open for what means MyDayLight could be used and an activity such as flirting
could definitely not have been though about before hearing it from Gerd himself. On top of this, is it also not yet clear if MyDayLight could, in fact, be an effective system to support Gerd with this activity. During the interview of the 25th of May, when a reflection conversation
is finally conducted, this topic is cut into. To lift the corner of the veil: Gerd does not at all seem willing to use the system for such means.