Young Patients' Views on the Open Web 2.0 Childhood Diabetes Patient Portal : A Qualitative Study

Little is known about the views of young patients themselves on interactive Web portal services provided by pediatric practitioners. We aimed to explore their perceptions of a real-world diabetes portal that offers facts and contact with peers and practitioners; e.g., discussion forums, blog tools, self-care and treatment information, research updates and news from local practitioners. Twelve young patients (ages 12–21, median 15 years), one boyfriend, 7 mothers and one father each wrote an essay on their experience from use of the portal. Their essays underwent qualitative content analysis. A major theme was “Helping and facilitating daily life with diabetes”, the portal was perceived as a place where contents are interesting, inspiring and may trigger users’ curiosity. There were three subthemes; “Ease of use in my everyday life,” which includes the perception that the portal was perceived as smooth and easy to enter and navigate whenever needed; that information was easy to understand for different groups of users. “Support via an exchange of experience,” includes the ability to contact peers being regarded advantageous. Some said that just reading others’ experiences can be helpful in terms of persevering; children could find peers in the same age group. “Evidence based information,” includes the perception of the portal being a useful and trustworthy source of facts on e.g., physical activity, blood glucose, medical devices, emotional wellbeing, food and nutrition, and other aspects that impact living with diabetes. Young users expressed positive perceptions towards the interactive web portal. Such services seem to have great potential for supporting young patients and significant others - intergrading for confidence