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      Young People’s, Parents’, and Professionals’ Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study

      research-article
      , BA (Hons), MSc, PhD 1 , , BSc (Hons), MSc, PhD 2 , , BSc (Hons), MSc, PhD 1 , , BSc (Hons) 1 , , BSc (Hons) 3 , , BSc (Hons), MMedSCi, PhD 1 , 4 ,
      (Reviewer), (Reviewer), (Reviewer), (Reviewer)
      JMIR mHealth and uHealth
      JMIR Publications
      Adolescent, young people, juvenile arthritis, mobile apps, self-management, qualitative research

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          Abstract

          Background

          There is growing evidence that supporting self-management of Juvenile Arthritis can benefit both patients and professionals. Young people with Juvenile Arthritis and their healthy peers increasingly use mobile technologies to access information and support in day-to-day life. Therefore, a user-led, rigorously developed and evaluated mobile app could be valuable for facilitating young people’s self-management of Juvenile Arthritis.

          Objective

          The objective of this study was to seek the views of young people with Juvenile Arthritis, their parents or carers, and health care professionals (HCPs) as to what should be included in a mobile app to facilitate young people’s self-management of chronic Juvenile Arthritis.

          Methods

          A qualitative approach was adopted with a purposeful sample of 9 young people aged 10-18 years with Juvenile Arthritis, 8 parents or carers, and 8 HCPs involved in their care. Data were gathered through semi-structured focus group and individual interviews with young people and their parents or carers and HCPs. Interview discussion was facilitated through demonstration of four existing health apps to explore participants’ views on strengths and limitations of these, barriers and facilitators to mobile app use, preferred designs, functionality, levels of interaction, and data sharing arrangements. Data were analyzed using the framework approach.

          Results

          Analysis revealed three interlinked, overarching themes: (1) purpose, (2) components and content, and (3) social support. Despite some differences in emphasis on essential content, general agreement was found between young people with Juvenile Arthritis their parents or carers, and professionals that a mobile app to aid self-management would be useful. Underpinning the themes was a prerequisite that young people are enabled to feel a sense of ownership and control of the app, and that it be an interactive, engaging resource that offers developmentally appropriate information and reminders, as well as enabling them to monitor their symptoms and access social support.

          Conclusions

          Findings justify and pave the way for a future feasibility study into the production and preliminary testing of such an app. This would consider issues such as compatibility with existing technologies, costs, age, and cross-gender appeal as well as resource implications.

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          Most cited references31

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          A Systematic Review of Gamification in e-Health.

          Gamification is a relatively new trend that focuses on applying game mechanics to non-game contexts in order to engage audiences and to inject a little fun into mundane activities besides generating motivational and cognitive benefits. While many fields such as Business, Marketing and e-Learning have taken advantage of the potential of gamification, the digital healthcare domain has also started to exploit this emerging trend. This paper aims to summarize the current knowledge regarding gamified e-Health applications. A systematic literature review was therefore conducted to explore the various gamification strategies employed in e-Health and to address the benefits and the pitfalls of this emerging discipline. A total of 46 studies from multiple sources were then considered and thoroughly investigated. The results show that the majority of the papers selected reported gamification and serious gaming in health and wellness contexts related specifically to chronic disease rehabilitation, physical activity and mental health. Although gamification in e-Health has attracted a great deal of attention during the last few years, there is still a dearth of valid empirical evidence in this field. Moreover, most of the e-Health applications and serious games investigated have been proven to yield solely short-term engagement through extrinsic rewards. For gamification to reach its full potential, it is therefore necessary to build e-Health solutions on well-founded theories that exploit the core experience and psychological effects of game mechanics.
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            Using Framework Analysis in nursing research: a worked example.

            To demonstrate Framework Analysis using a worked example and to illustrate how criticisms of qualitative data analysis including issues of clarity and transparency can be addressed. Critics of the analysis of qualitative data sometimes cite lack of clarity and transparency about analytical procedures; this can deter nurse researchers from undertaking qualitative studies. Framework Analysis is flexible, systematic, and rigorous, offering clarity, transparency, an audit trail, an option for theme-based and case-based analysis and for readily retrievable data. This paper offers further explanation of the process undertaken which is illustrated with a worked example. Data were collected from 31 nursing students in 2009 using semi-structured interviews. The data collected are not reported directly here but used as a worked example for the five steps of Framework Analysis. Suggestions are provided to guide researchers through essential steps in undertaking Framework Analysis. The benefits and limitations of Framework Analysis are discussed. Nurses increasingly use qualitative research methods and need to use an analysis approach that offers transparency and rigour which Framework Analysis can provide. Nurse researchers may find the detailed critique of Framework Analysis presented in this paper a useful resource when designing and conducting qualitative studies. Qualitative data analysis presents challenges in relation to the volume and complexity of data obtained and the need to present an 'audit trail' for those using the research findings. Framework Analysis is an appropriate, rigorous and systematic method for undertaking qualitative analysis. © 2013 Blackwell Publishing Ltd.
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              Apps and Adolescents: A Systematic Review of Adolescents’ Use of Mobile Phone and Tablet Apps That Support Personal Management of Their Chronic or Long-Term Physical Conditions

              Background The prevalence of physical chronic or long-term conditions in adolescents aged 10-24 years is rising. Mobile phone and tablet mobile technologies featuring software program apps are widely used by these adolescents and their healthy peers for social networking or gaming. Apps are also used in health care to support personal condition management and they have considerable potential in this context. There is a growing body of literature on app use in health contexts, thereby making a systematic review of their effectiveness very timely. Objective To systematically review the literature on the effectiveness of mobile apps designed to support adolescents’ management of their physical chronic or long-term conditions. Methods We conducted a review of the English-language literature published since 2003 in five relevant bibliographical databases using key search terms. Two independent reviewers screened titles and abstracts using data extraction and quality assessment tools. Results The search returned 1120 hits. Of the 19 eligible full-text papers, four met our review criteria, reporting one pilot randomized controlled trial and three pretest/post-test studies. Samples ranged from 4 to 18 participants, with a combined sample of 46 participants. The apps reported were targeted at type 1 diabetes, asthma, and cancer. Two papers provided data for calculating effect size. Heterogeneity in terms of study design, reported outcomes, follow-up times, participants’ ages, and health conditions prevented meta-analyses. There was variation in whether adolescents received guidance in using the app or were solely responsible for navigating the app. Three studies reported some level of patient involvement in app design, development, and/or evaluation. Health professional involvement in the modelling stages of apps was reported in all studies, although it was not always clear whether specific clinical (as opposed to academic) expertise in working with adolescents was represented. The dearth of studies and the small overall sample size emphasizes the need for future studies of the development, evaluation, use, and effectiveness of mobile apps to support adolescents’ personal management of their conditions. Conclusions A key finding of the review is the paucity of evidence-based apps that exist, in contrast to the thousands of apps available on the app market that are not evidence-based or user or professional informed. Although we aimed to assess the effectiveness of apps, the dearth of studies meeting our criteria meant that we were unable to be conclusive in this regard. Based on the available evidence, apps may be considered feasible health interventions, but more studies involving larger sample sizes, and with patient and health professional input at all stages, are needed to determine apps’ acceptability and effectiveness. This review provides valuable findings and paves the way for future rigorous development and evaluation of health apps for adolescents with chronic or long-term conditions.
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                Author and article information

                Contributors
                Journal
                JMIR Mhealth Uhealth
                JMIR Mhealth Uhealth
                JMU
                JMIR mHealth and uHealth
                JMIR Publications (Toronto, Canada )
                2291-5222
                January 2018
                19 January 2018
                : 6
                : 1
                : e25
                Affiliations
                [1] 1 School of Healthcare University of Leeds Leeds United Kingdom
                [2] 2 School of Psychological Sciences University of Manchester Manchester United Kingdom
                [3] 3 Leeds Children’s Hospital Leeds United Kingdom
                [4] 4 Faculty of Science Charles Sturt University Bathurst Australia
                Author notes
                Corresponding Author: Veronica Swallow v.m.swallow@ 123456leeds.ac.uk
                Author information
                http://orcid.org/0000-0003-3996-5371
                http://orcid.org/0000-0003-0892-4710
                http://orcid.org/0000-0003-0974-3591
                http://orcid.org/0000-0002-5943-1310
                http://orcid.org/0000-0001-9315-0742
                http://orcid.org/0000-0001-8504-4704
                Article
                v6i1e25
                10.2196/mhealth.9179
                5797289
                29351898
                c57b95d2-d608-498c-9be4-63ba9ad852a3
                ©Jennifer M Waite-Jones, Rabiya Majeed-Ariss, Joanna Smith, Simon R Stones, Vanessa Van Rooyen, Veronica Swallow. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 19.01.2018.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR mhealth and uhealth, is properly cited. The complete bibliographic information, a link to the original publication on http://mhealth.jmir.org/, as well as this copyright and license information must be included.

                History
                : 14 October 2017
                : 3 November 2017
                : 17 November 2017
                Categories
                Original Paper
                Original Paper

                adolescent,young people,juvenile arthritis,mobile apps,self-management,qualitative research

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