Sam Nordfeldt*, MD PhD, Linkoping, Sweden Carina Bertero, Professor in Nursing Science, Linkoping, Sweden Track: Research Presentation Topic: Building virtual communities and social networking applications for patients and consumers Presentation Type: Poster presentation Submission Type: Single Presentation Building: MECC Room: Trajectum Last modified: 2010-07-08

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Background: Management of childhood Type 1 diabetes requires daily intensive self-treatment, continuous support and problem-based learning. We previously reported users’ attitudes toward a restricted access Web 2.0 portal service tailored to selected young type 1 diabetes patients and their parents. However, little is known about the views of young patients themselves on such resources provided as open source on the free Internet.

Objectives: We aimed to explore patients’ and parents’ attitudes toward an open Web 2.0 portal tailored to young type 1 diabetes patients and parents, school staff and others. The portal offered a range of targeted services: social networking tools (message boards, blog tools), interactive pedagogic devices, self-care and treatment information (extensive text and video materials from practitioners), news from local practitioners, diabetes research updates with comments, practitioners’ e-mail contact and FAQ services, and more).

Methods: Twelve young patients (ages 12-21, median 15), one boyfriend (age 17), 7 mothers and one father each wrote an essay on their experience from use of the portal. Two main guiding questions were asked, focusing on positive and negative user experiences. Data were collected in 2009 when there was open access to the portal. Their essays underwent qualitative content analysis.

Results: A major theme was identified as “Helping and facilitating the daily life with diabetes”, with the portal perceived as a nice and pleasant place where contents are interesting, inspiring and may trigger users’ curiosity as well. Users felt they got answers and found the information they needed, and they said there are excellent things written there about diabetes.

This major theme was built up via three subthemes;
“Friendly functions in everyday life” includes that it was perceived as smooth and easy to enter the portal whenever needed from anywhere, spending less time waiting in the telephone. It was perceived as easy to find the way around on the site, the information was easy to read and to understand for different groups of users.

“Support via exchange of experience” includes that being enabled to connect to peers was regarded advantageous, for some as a real confidence. Just reading others’ experiences, both positive and negative, may help one to carry on and one can also help others some said. There was a perceived value in finding young peers in the same age span and that also children could find peers with diabetes.

“Enlightenment via facts, news and trust” includes that the portal was appreciated as a useful and trustworthy source of facts regarding diabetes in daily life. A number of examples were given showing specific information needs that had been met, e g physical activity and blood glucose, available medical devices, emotional wellbeing and diabetes, food and nutrition and other factors with impact on life with diabetes.

Conclusions: Young users embraced a set of positive attitudes towards a tailored open Web 2.0 portal combining patients’ community, practitioners’ facts and other selected services and resources. Open access Web 2.0 services seem to have great potential for supporting young patients with long-term disease.