A new bilingual (English and French) Internet-based self-management program, Teens Taking Charge: Managing Arthritis Online, for adolescents with arthritis and their parents was developed following a needs assessment.
This study explored the usability (user performance and satisfaction) of the self-management program for youth with juvenile idiopathic arthritis (JIA) and their parents to refine the health portal prototype.
A qualitative study design with semi-structured, audio taped interviews and observation by a trained observer was undertaken with two iterative cycles to determine the usability (ease of use, efficiency, errors, and user satisfaction) of the user interface and content areas of the intervention. A purposive sample of English-speaking (n = 11; mean age = 15.4, standard deviation [SD] 1.7) and French-speaking (n = 8; mean age = 16.0, SD 1.2) adolescents with JIA and one of their respective parents/caregivers were recruited from 2 Canadian tertiary care centers. Descriptive statistics and simple content analyses were used to organize data into categories that reflected the emerging usability themes.
All of the participants had access to a computer/Internet at home; however, adolescents were more comfortable using the computer/Internet than their parents. Adolescents and parents provided similar as well as differing suggestions on how the website user interface could be improved in terms of its usability (navigation; presentation and control usage errors; format and layout; as well as areas for further content development). There were no major differences in usability issues between English- and French-speaking participants. Minor changes to the website user interface were made and tested in a second cycle of participants. No further usability problems were identified in the second iterative cycle of testing. Teens and parents responded positively to the appearance and theme of the website (ie, promoting self-management) and felt that it was easy to navigate, use, and understand. Participants felt that the content was appropriate and geared to meet the unique needs of adolescents with JIA and their parents as well as English- and French-speaking families. Many participants responded that the interactive features (discussion board, stories of hope, and video clips of youth with JIA) made them feel supported and "not alone" in their illness.
We describe the usability testing of a self-management health portal designed for English- and French-speaking youth with arthritis and their parents, which uncovered several usability issues. Usability testing is a crucial step in the development of self-management health portals to ensure that the various end users (youth and parents) have the ability to access, understand, and use health-related information and services that are delivered via the Internet and that they are delivered in an efficient, effective, satisfying, and culturally competent manner.
"Mirroring the findings related to the virtual world, the studies evaluating discussion forums found a dichotomy in that some groups preferred to use the social media tools as a distraction from their illness [13,22], while others valued the ability to connect with others [14,15,19]. One distinction between these two groups was that younger children tended to be included in those studies that presented social media as a diversion, while adolescents were more highly represented in studies that found a benefit in building a social network. "
[Show abstract][Hide abstract] ABSTRACT: Background
Social media use is highly prevalent among children, youth, and their caregivers, and its use in healthcare is being explored. The objective of this study was to conduct a systematic review to determine: 1) for what purposes social media is being used in child health and its effectiveness; and 2) the attributes of social media tools that may explain how they are or are not effective.
We searched Medline, CENTRAL, ERIC, PubMed, CINAHL, Academic Search Complete, Alt Health Watch, Health Source, Communication and Mass Media Complete, Web of Knowledge, and Proquest Dissertation and Theses Database from 2000–2013. We included primary research that evaluated the use of a social media tool, and targeted children, youth, or their families or caregivers. Quality assessment was conducted on all included analytic studies using tools specific to different quantitative designs.
We identified 25 studies relevant to child health. The majority targeted adolescents (64%), evaluated social media for health promotion (52%), and used discussion forums (68%). Most often, social media was included as a component of a complex intervention (64%). Due to heterogeneity in conditions, tools, and outcomes, results were not pooled across studies. Attributes of social media perceived to be effective included its use as a distraction in younger children, and its ability to facilitate communication between peers among adolescents. While most authors presented positive conclusions about the social media tool being studied (80%), there is little high quality evidence of improved outcomes to support this claim.
This comprehensive review demonstrates that social media is being used for a variety of conditions and purposes in child health. The findings provide a foundation from which clinicians and researchers can build in the future by identifying tools that have been developed, describing how they have been used, and isolating components that have been effective.
"These websites include interactive activities, self-monitoring and reflection, youth-to-youth information sharing and social support, and accurate, accessible and developmentally targeted health specific information . Features such as discussion boards, stories of hope, and video clips help to provide support and reduce the feelings of isolation in their illness . User generated content forms an important part of personalisation online. "
[Show abstract][Hide abstract] ABSTRACT: Young people living with long term conditions will eventually have to transfer their care to the adult setting. Failure to plan and coordinate this has been associated with poorer health outcomes and disruption to their care. Transition planning encourages both health literacy and health promoting behaviours in an age and developmentally appropriate way. In order to gauge the attainment of these skills the Birmingham Children’s Hospital Adolescent Rheumatology Team (UK) have developed a series of transitional care checklists. This paper focuses on discussing how the application of gamification (using game mechanics in non-game contexts) to these checklists could improve the engagement of young people in managing their self-care and provide a mechanism for doctors to quantifying the acquisition of these skills.
"The search terms 'biofeedback' and 'EMG biofeedback' revealed no relevant results. Medical applications are currently not regulated and while no widespread formal evaluation tool exists either, a few guidelines, standards and surveys have been developed to evaluate health applications , . Others have used semi-structured interviews  to assess the usability of health applications. "
[Show abstract][Hide abstract] ABSTRACT: Swallowing impairments, or dysphagia, can lead to serious health problems and psychosocial concerns. Effective treatment can be enhanced with the use of adjuvant visual biofeedback from surface electromyography (sEMG) to monitor muscle movement during intensive swallowing exercises. However, access to this therapy is currently possible only in a clinical setting, and is therefore restricted due to limited clinical capacity and technology costs. In this paper, we describe the concept for a new hardware-and-software mobile system for swallowing therapy: Mobili-T. The system, designed by an interdisciplinary team of biomedical engineers, clinicians, and industrial designers, will help patients with dysphagia go through their rehabilitation regimens at home.
2014 IEEE 27th International Symposium on Computer-Based Medical Systems (CBMS); 05/2014
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