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      Usability Testing of an Online Self-management Program for Adolescents With Juvenile Idiopathic Arthritis

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          Abstract

          Background

          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.

          Objectives

          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.

          Methods

          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.

          Results

          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.

          Conclusions

          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.

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          Most cited references29

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          Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review.

          The quality of consumer health information on the World Wide Web is an important issue for medicine, but to date no systematic and comprehensive synthesis of the methods and evidence has been performed. To establish a methodological framework on how quality on the Web is evaluated in practice, to determine the heterogeneity of the results and conclusions, and to compare the methodological rigor of these studies, to determine to what extent the conclusions depend on the methodology used, and to suggest future directions for research. We searched MEDLINE and PREMEDLINE (1966 through September 2001), Science Citation Index (1997 through September 2001), Social Sciences Citation Index (1997 through September 2001), Arts and Humanities Citation Index (1997 through September 2001), LISA (1969 through July 2001), CINAHL (1982 through July 2001), PsychINFO (1988 through September 2001), EMBASE (1988 through June 2001), and SIGLE (1980 through June 2001). We also conducted hand searches, general Internet searches, and a personal bibliographic database search. We included published and unpublished empirical studies in any language in which investigators searched the Web systematically for specific health information, evaluated the quality of Web sites or pages, and reported quantitative results. We screened 7830 citations and retrieved 170 potentially eligible full articles. A total of 79 distinct studies met the inclusion criteria, evaluating 5941 health Web sites and 1329 Web pages, and reporting 408 evaluation results for 86 different quality criteria. Two reviewers independently extracted study characteristics, medical domains, search strategies used, methods and criteria of quality assessment, results (percentage of sites or pages rated as inadequate pertaining to a quality criterion), and quality and rigor of study methods and reporting. Most frequently used quality criteria used include accuracy, completeness, readability, design, disclosures, and references provided. Fifty-five studies (70%) concluded that quality is a problem on the Web, 17 (22%) remained neutral, and 7 studies (9%) came to a positive conclusion. Positive studies scored significantly lower in search (P =.02) and evaluation (P =.04) methods. Due to differences in study methods and rigor, quality criteria, study population, and topic chosen, study results and conclusions on health-related Web sites vary widely. Operational definitions of quality criteria are needed.
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            The Process of Cultural Competence in the Delivery of Healthcare Services: a model of care.

            Several models of service care delivery have emerged to meet the challenges of providing health care to our growing multi-ethnic world. This article will present Campinha-Bacote's model of cultural competence in health care delivery: The Process of Cultural Competence in the Delivery of Healthcare Services. This model views cultural competence as the ongoing process in which the health care provider continuously strives to achieve the ability to effectively work within the cultural context of the client (individual, family, community). This ongoing process involves the integration of cultural awareness, cultural knowledge, cultural skill, cultural encounters, and cultural desire.
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              Receiving social support online: implications for health education.

              Online support groups are expanding as the general public becomes more comfortable using computer-mediated communication technology. These support groups have certain benefits for users who may not be able to or do not have the desire to attend face-to-face sessions. Online support groups also present challenges when compared to traditional face-to-face group communication. Communication difficulties may arise resulting from lack of visual and aural cues found in traditional face-to-face communication. Online support groups have emerged within health care as a result of the need individuals have to know more about health conditions they are confronting. The proliferation of these online communities may provide an opportunity for health educators to reach target populations with specific messages. This paper reviews the development of health-related online support groups, examines research conducted within these communities, compares their utility with traditional support groups and discusses the implications of these groups for health education.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                JMIR
                Journal of Medical Internet Research
                Gunther Eysenbach (Centre for Global eHealth Innovation, Toronto, Canada )
                1438-8871
                Jul-Sep 2010
                29 July 2010
                : 12
                : 3
                : e30
                Affiliations
                [10] 10simpleDepartment of Rheumatology simpleBC Children’s Hospital VancouverCanada
                [09] 9simpleDepartment of Rheumatology simpleMontreal Children’s Hospital MontrealCanada
                [08] 8simpleDepartment of Rheumatology simpleIWK Health Centre HalifaxCanada
                [07] 7simpleDepartment of Research simpleIWK Health Centre HalifaxCanada
                [06] 6simpleFaculty of Medicine simpleUniversity of Toronto TorontoCanada
                [05] 5simpleLawrence S. Bloomberg Faculty of Nursing simpleUniversity of Toronto TorontoCanada
                [04] 4simpleChild Health Evaluative Sciences simpleThe Hospital for Sick Children TorontoCanada
                [03] 3simpleDepartment of Rheumatology simpleThe Hospital for Sick Children TorontoCanada
                [02] 2simpleCentre for Nursing simpleThe Hospital for Sick Children TorontoCanada
                [01] 1simpleDepartment of Anesthesia and Pain Medicine simpleThe Hospital for Sick Children TorontoCanada
                Article
                v12i3e30
                10.2196/jmir.1349
                2956330
                20675293
                9a7398b8-b61d-4abc-9a77-aeed173aca0b
                ©Jennifer Stinson, Patrick McGrath, Ellen Hodnett, Brian Feldman, Ciaran Duffy, Adam Huber, Lori Tucker, Ross Hetherington, Shirley Tse, Lynn Spiegel, Sarah Campillo, Navreet Gill, Meghan White. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 29.07.2010  

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

                History
                : 08 September 2009
                : 03 December 2009
                : 05 February 2010
                : 12 March 2010
                Categories
                Original Paper

                Medicine
                juvenile idiopathic arthritis,internet,usability testing,self-management,adolescent
                Medicine
                juvenile idiopathic arthritis, internet, usability testing, self-management, adolescent

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