Patient and Parents’ Views on the Web 2.0 Diabetes Portal - the Management Tool, the Generator and the Gatekeeper: Qualitative Study
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Abstract
Background
The Internet has undergone rapid development, with significant impact on social life and on modes of communication. Modern management of childhood Type 1 diabetes requires continuous support and problem-based learning, but few pediatric clinics offer Web 2.0 resources to patients as part of routine diabetes care. We previously reported practitioners' attitudes (J Med Internet Res 2009;11(2):e12), but little is known about the views of young patients and their parents.
Objectives
We aimed to explore patients’ and parents’ attitudes toward a local Web 2.0 portal tailored to young type 1 diabetes patients and their parents, belonging to a geographic population of two hospitals. The portal offered a range of targeted services: social networking tools (such as message boards for young patients, message boards for parents, simple blog tools), interactive pedagogic devices and locally produced self-care and treatment information (such as extensive text and video materials from local practitioners, simple e-mail question and answer services, local news from practitioners, diabetes research updates with practitioners comments, and much more). Opportunities and obstacles were sought.
Methods
Sixteen mothers, 3 fathers and 5 young patients (ages 11-18 years, median 14 years) each wrote an essay on their experience from using the portal, irrespective of frequency and/or success in using it. Two main guiding questions were asked.“Tell me about a situation when you succeeded in using Diabit. Has Diabit made managing the disease easier in any way? Are there any advantages in using Diabit? Tell me about a situation when you did not succeed in using Diabit. Has Diabit become an obstacle in some way? Are there any disadvantages in using Diabit?†We analyzed the essays within the context of self-care, using qualitative content analysis. Data were collected in 2008, when login was still required for access to the portal.
Results
Three main categories were found: the Management Tool, the Generator, and the Gatekeeper.
The Management Tool: a set of positive attitudes and a wide range of concrete examples were 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 they did not know they had before, and questions focusing on sensitive areas such as anxiety and fear, was also an important feature.
The Generator: visiting the portal could generate more information than expected, which could lead to increased use. Active message boards and chat rooms were thought to have great potential 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. The Gatekeeper: a gatekeeper effect from login procedures was created from human mismatch with the login system. 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 identify with the disease.
Conclusions
Web 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 may generate continued use and should therefore be carefully maintained by health care professionals who are “on their toes.†Login procedures should be simple and minimized to necessary levels. The education of clinical practitioners regarding their use of Web 2.0 resources needs more attention.
The Internet has undergone rapid development, with significant impact on social life and on modes of communication. Modern management of childhood Type 1 diabetes requires continuous support and problem-based learning, but few pediatric clinics offer Web 2.0 resources to patients as part of routine diabetes care. We previously reported practitioners' attitudes (J Med Internet Res 2009;11(2):e12), but little is known about the views of young patients and their parents.
Objectives
We aimed to explore patients’ and parents’ attitudes toward a local Web 2.0 portal tailored to young type 1 diabetes patients and their parents, belonging to a geographic population of two hospitals. The portal offered a range of targeted services: social networking tools (such as message boards for young patients, message boards for parents, simple blog tools), interactive pedagogic devices and locally produced self-care and treatment information (such as extensive text and video materials from local practitioners, simple e-mail question and answer services, local news from practitioners, diabetes research updates with practitioners comments, and much more). Opportunities and obstacles were sought.
Methods
Sixteen mothers, 3 fathers and 5 young patients (ages 11-18 years, median 14 years) each wrote an essay on their experience from using the portal, irrespective of frequency and/or success in using it. Two main guiding questions were asked.“Tell me about a situation when you succeeded in using Diabit. Has Diabit made managing the disease easier in any way? Are there any advantages in using Diabit? Tell me about a situation when you did not succeed in using Diabit. Has Diabit become an obstacle in some way? Are there any disadvantages in using Diabit?†We analyzed the essays within the context of self-care, using qualitative content analysis. Data were collected in 2008, when login was still required for access to the portal.
Results
Three main categories were found: the Management Tool, the Generator, and the Gatekeeper.
The Management Tool: a set of positive attitudes and a wide range of concrete examples were 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 they did not know they had before, and questions focusing on sensitive areas such as anxiety and fear, was also an important feature.
The Generator: visiting the portal could generate more information than expected, which could lead to increased use. Active message boards and chat rooms were thought to have great potential 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. The Gatekeeper: a gatekeeper effect from login procedures was created from human mismatch with the login system. 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 identify with the disease.
Conclusions
Web 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 may generate continued use and should therefore be carefully maintained by health care professionals who are “on their toes.†Login procedures should be simple and minimized to necessary levels. The education of clinical practitioners regarding their use of Web 2.0 resources needs more attention.
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