First results of an ongoing investigation in the POSEIDON project
Detlef Oesterreich, Anna Zirk, Eva Schulze, Berlin Institute for Social Research (BIS), Germany
Modern information and communication technology (ICT) can be a big help for people with Down’s syndrome. Smartphones and tablets can provide apps that enable people to better orient themselves when travelling, remembering appointments, reminding them to take their medicine or just staying in permanent contact with their caregivers. This may help them to become more independent and autonomous.
The POSEIDON project (PersOnalized Smart Environments to increase Inclusion of people with DOwn’s syNdrome) tries to develop such an assistive technology. To make sure that this technology will meet the needs of people with Down’s syndrome and the competencies of their potential users it follows a user centered approach. This means that from the beginning of the project users (people with Down’s syndrome) and their caregivers are involved.
In a first step we tried to find out what people with Down’s syndrome need, what they are able to handle and what they want. Therefore, we developed a standardized online questionnaire addressing caregivers, had face to face interviews with people with Down’s syndrome and their caregiver and conducted workshops to get a first impression on how people with Down’s syndrome use modern information technology.
Central to these analyses was the online questionnaire on the everyday life of people with Down’s syndrome, their interests and the extent to which they are familiar with modern information or assistive technologies. The still ongoing questionnaire has been sent out through Down’s Syndrome Associations. In the first step it was provided in English, German and Norwegian, now the questionnaire is also available in Slovenian, Portuguese and Italian. Although the population of people with Down’s syndrome is small, 553 questionnaires were answered. The respondents were mostly parents who have a child with Down’s syndrome.
The first result of our investigation is that people with Down’s syndrome have highly divergent competencies. From the perspective of their caregivers some of them can do a lot of things on their own, some of them cannot do these things at all, and a bigger group is able to do these things with help. This includes the use of modern information or assistive technologies.
Many people with Down’s syndrome already use modern information technology: 83% use a laptop or PC, 77% a tablet and 55% a smartphone (see figure 1). This means that only a small group of people with Down’s syndrome are not able to use these technologies at all. However, within the group of those using these technologies about half of them need help.
Figure 1: Using modern information-technology
The online-survey provides a broad overview on the problems people with Down’s syndrome have in their daily life. Questions were asked on time management, handling money, travelling, health behaviour, communication, and school/work/learning. The overall impression is that there are comparatively few things people with Down’s syndrome cannot do at all, but many things they can do with some help. This means that there is a big chance that modern information technology will be of great help in assisting everyday life activities.
Help by information technology is also important for caregivers. They see chances that IT will make their own work easier. They hope to get better informed about the whereabouts of the person they care for (e.g. whether they have reached a destination safely), or setting alerts to remind them of doing certain things (see figure 2).
Figure 2: Features of assistive technologies which would be helpful for caregivers themselves
The overall impression of our requirement analysis is that people with Down’s syndrome can gain much support from modern information technology. Tablets especially offer a big chance to become more independent and autonomous.
Our analyses show that for people with Down’s syndrome, the major features a tablet has to provide is an easy to handle GPS-system.
Furthermore the application
has to be fun to use,
motivate for further usage after completing a learning task or travelling alone,
be adaptable for individual needs,
avoid need for fast reaction,
be able to play music,
be able to set reminder alerts, and
it must guarantee privacy.