Patient and Parent Views on a Web 2.0 Diabetes Portal—the Management Tool, the Generator, and the Gatekeeper: Qualitative Study

Abstract

BackgroundThe Internet has undergone rapid development, with significant impact on social life and on modes of communication. Modern management of type 1 diabetes requires that patients have access to continuous support and learning opportunities. Although Web 2.0 resources can provide this support, few pediatric clinics offer it as part of routine diabetes care.ObjectiveWe aimed to explore patients’ and parents’ attitudes toward a local Web 2.0 portal tailored to young patients with type 1 diabetes and their parents, with social networking tools such as message boards and blogs, locally produced self-care and treatment information, and interactive pedagogic devices. Opportunities and obstacles to the implementation of Web 2.0 applications in clinical practice were sought.MethodsParticipants were 16 mothers, 3 fathers, and 5 young patients (ages 11-18 years; median 14 years) who each wrote an essay on their experience using the portal, irrespective of frequency and/or their success in using it. Two main guiding questions were asked. A qualitative content analysis was conducted of the essays as a whole.ResultsThree main categories of portal users’ attitudes were found; we named them “the management tool,” “the generator,” and “the gatekeeper.” One category was related to the management tool functionality of the portal, and a wide range of concrete examples was found regarding useful facts and updates. Being enabled to search when necessary and find reliable information provided by local clinicians was regarded as a great advantage, facilitating a feeling of security and being in control. Finding answers to difficult-to-ask questions, questions portal users did not know they had before, and questions focusing on sensitive areas such as anxiety and fear, was also an important feature. A second category was related to the generator function in that visiting the portal could generate more information than expected, which could lead to increased use. Active message boards and chat rooms were found to have great value for enhancing mediation of third party peer-to-peer information. A certain level of active users from peer families and visible signs of their activity were considered necessary to attract returning users. A third category was related to the gatekeeper function of the password requirement, which created various access problems. This and other unsuccessful experiences caused users to drop the portal. A largely open portal was suggested to enhance use by those associated with the child with diabetes, such as school personnel, relatives, friends and others, and also by young users somewhat unwilling to self-identify with the disease.ConclusionsWeb 2.0 services have great potential for supporting parents and patients with type 1 diabetes by enhancing their information retrieval and disease management. Well-developed services, such as this one, may generate continued use and should, therefore, be carefully maintained and updated by health care professionals who are alert and active on the site with new informat...

‘The web is not enough, it's a base’ – an explorative study of what needs a web-based support system for young carers must meet

“…However, it is important to consider certain elements of design [18,20,21,30] and barriers to use [19]. To extend the support one step further we must also consider the role that web-based support can play when it comes to the need for real-life contacts and action.…”

“…A website has the potential to meet needs of knowledge and communication, which may be improved if taking design issues [18,20,21,30] and barriers to use [19] into account. For YCs, learning about different aspects of their own situation, sharing experiences, and getting advice may be valuable tools to survive everyday life.…”

“…It has been indicated that the most frequently used types of web support are sharing experiences, seeking information, providing/seeking support and advice, and seeking contact with others outside the website, for real-life meetings and exchange of email addresses [18]. Barriers for use of web-based support can be technical, for example passwords, but also psychological, for example reluctance to identify with the reason for the support need [19]. To take account of effects of anonymity on information sharing in online groups has been proven important in earlier research [29] and was further explored in a recent study [30].…”

“…The lack of research into the use of technology to support this group has also been pointed out [17]. There are some, albeit few, studies of web technology use to support young people in other health-related contexts [18][19][20][21].…”

“…However, to our knowledge, there has been no previous study which systematically collects and structures the user data which would be relevant for building such a web-based support system. The aim of the present study was to explore and describe the support needs of YCs, aged [16][17][18][19][20][21][22][23][24][25], in relation to their life situation and in the context of a hypothetical web-based support system.…”