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

Abstract

Abstract: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 OPEN ACCESSFuture Internet 2012, 4 515 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.

Parents of Adolescents with Type 1 Diabetes - Their Views on Information and Communication Needs and Internet Use. A Qualitative Study

“…Thus, practitioner participation is important for enhancing trust when information is obtained electronically e.g. from websites and discussion boards [15], [16], [20].…”

“…This study suggests that the general availability of such improved services for communication with healthcare practitioners may be of substantial benefit to many. Secondly, open interactive thematic information resources including facts and open discussion with practitioners may be of benefit to many [15], [16]. A key issue for successful design is to maintain trustworthiness [33], again implying the need for practitioners, website editors and parents to collaborate [15], [16], [20], [38], [40].…”

“…The Internet is a rapidly emerging source of information, health services, and peer support through online networks and forums [12], [13], [14]. Numerous online websites and parental discussion groups exist related to childhood T1DM [15], [16], [17]. The umbrella term ‘Web 2.0’ describes a range of widely used Internet applications to enhance participation, collaboration, openness, social networking and sharing information with peers [18].…”

“…The umbrella term ‘Web 2.0’ describes a range of widely used Internet applications to enhance participation, collaboration, openness, social networking and sharing information with peers [18]. Such new technologies have great potential to enhance health information delivery and exchange when needed, and this includes use of new mobile devices [16], [17], [18]. Hence, much remains to be learned for practitioners and system developers [19], [20].…”

As Facts and Chats Go Online, What Is Important for Adolescents with Type 1 Diabetes?

“…Internet-based interventions may improve access to health services, patient education and quality of care, and have been reported to influence adult diabetic patients' health care utilization, behaviour, attitudes, knowledge, skills, and, to some extent, metabolic control [18], [19]. Positive attitudes towards communicating on the Internet have been reported from adolescents as well as young adults with T1DM, and their health practitioners [10], [20]–[22]. Considering the rapidly evolving new communication practices, a wide and technology-independent research focus is needed.…”