Dataset Information

A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design.

ABSTRACT: BACKGROUND:Management of type 1 diabetes (T1D) among children aged <6 years is exceptionally challenging for parents and caregivers. Metabolic and psychosocial outcomes among very young children with T1D (YC-T1D) are tightly associated with their parents' ability to meet these challenges. There is scant research testing interventions targeting these issues and few resources to equip health care providers with feasible and effective coping strategies for these parents. User-centered design (UCD) of a continuously accessible Web-based resource could be a mechanism for helping parents of YC-T1D cope more effectively with the complex challenges they face by providing them with information, solutions, and emotional support. OBJECTIVE:The objectives of this paper are to (1) describe the application of UCD principles to the development of a Web-based coping intervention designed by and for parents of very young children (<6 years old) with T1D; (2) illustrate the use of crowdsourcing methods in obtaining the perspectives of parents, health care providers, and Web development professionals in designing and creating this resource; and (3) summarize the design of an ongoing randomized controlled trial (RCT) that is evaluating the effects of parental access to this resource on pertinent child and parent outcomes. METHODS:This paper illustrates the application of UCD principles to create a Web-based coping resource designed by and for parents of YC-T1D. A Web-based Parent Crowd, a Health Care Provider Crowd, and a Focus Group of minority parents provided input throughout the design process. A formal usability testing session and design webinars yielded additional stakeholder input to further refine the end product. RESULTS:This paper describes the completed website and the ongoing RCT to evaluate the effects of using this Web-based resource on pertinent parent and child outcomes. CONCLUSIONS:UCD principles and the targeted application of crowdsourcing methods provided the foundation for the development, construction, and evaluation of a continuously accessible, archived, user-responsive coping resource designed by and for parents of YC-T1D. The process described here could be a template for the development of similar resources for other special populations that are enduring specific medical or psychosocial distress. The ongoing RCT is the final step in the UCD process and is designed to validate its merits.

SUBMITTER: Wysocki T

PROVIDER: S-EPMC6307695 | biostudies-literature | 2018 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design.

Wysocki Tim T Pierce Jessica J Caldwell Cindy C Aroian Karen K Miller Louis L Farless Rebecca R Hafezzadeh Ivy I McAninch Terri T Lee Joyce M JM

JMIR diabetes 20181217 4

<h4>Background</h4>Management of type 1 diabetes (T1D) among children aged <6 years is exceptionally challenging for parents and caregivers. Metabolic and psychosocial outcomes among very young children with T1D (YC-T1D) are tightly associated with their parents' ability to meet these challenges. There is scant research testing interventions targeting these issues and few resources to equip health care providers with feasible and effective coping strategies for these parents. User-centered desig ...[more]

PMID: 30559089

Similar Datasets

Project description:BackgroundThe involvement of patient research partners (PRPs) in research aims to safeguard the needs of patient groups and produce new interventions that are developed based on patient input. Myocardial infarction with nonobstructive coronary arteries (MINOCA), unlike acute myocardial infarction (MI) with obstructive coronary arteries, is presented with no significant obstructive coronary artery disease. Patients with this diagnosis are a subset of those diagnosed with traditional MI and often need more psychological support, something that is presently not established in the current treatment scheme in Swedish health care or elsewhere, to our knowledge. An internet-delivered intervention might offer patients with MINOCA the opportunity to access a psychological treatment that is tailored to their specific needs after MINOCA and could therefore supplement the existing medical care in an easily accessible format.ObjectiveThis paper aims to describe the development of a therapist-guided, internet-delivered psychological intervention designed specifically for patients with MINOCA.MethodsThe study used a participatory design that involved 7 PRPs diagnosed with MINOCA who collaborated with a team consisting of researchers, cardiologists, and psychologists. Intervention content was developed iteratively and presented to the PRPs across several prototypes, each continually adjusted and redesigned according to the feedback received. The intervention and experience of it were discussed by PRPs in a final meeting and then presented to a panel of 2 clinical psychologists and a cardiologist for further input.ResultsThe outcome of the collaboration between PRPs and the research group produced a web-based psychological 9-step program focusing on stress, worry, and valued action. The input from PRPs contributed substantially to the therapy content, homework tasks, interactive activities, multimedia, and design presentation.ConclusionsWorking with PRPs to develop an intervention for people with MINOCA produced a web-based intervention that can be further evaluated with the goal of offering a new psychological treatment option to a patient group currently without one. Direct contribution from PRPs enabled us to obtain relevant, insightful, and valuable feedback that was put towards the overall design and content of the intervention.

Project description:BackgroundAlthough eHealth technology makes it possible to improve the management of complex health care systems and follow up on chronic patients, it is not without challenges, thus requiring the development of efficient programs and graphic user interface (GUI) features. Similar information technology tools are crucial, as health care populations are going to have to endure social distancing measures in the forthcoming months and years.ObjectiveThis study aims to provide adequate and personalized support to complex health care populations by developing a specific web-based mobile app. The app is designed around the patient and adapted to specific groups, for example, people with complex or rare diseases, autism, or disabilities (especially among children) as well as Alzheimer or senile dementia. The app's core features include the collection, labeling, analysis, and sorting of clinical data. Furthermore, it authorizes a network of people around the patient to securely access the data contained in his or her electronic health record.MethodsThe application was designed according to the paradigms of patient-centered care and user-centered design (UCD). It considers the patient as the main empowered and motivating factor in the management of his or her well-being. Implementation was informed through a family needs and technology perception assessment. We used 3 interdisciplinary focus groups and 2 assessment surveys to study the contexts of app use, subpopulation management, and preferred functions. Finally, we developed an observational study involving 116 enrolled patients and 253 system users, followed by 2 feedback surveys to evaluate the performance and impact of the app.ResultsIn the validated general GUI, we developed 10 user profiles with different privacy settings. We tested 81 functions and studied a modular structure based on disease or medical area. This allowed us to identify replicable methods to be applied to module design. The observational study not only showed good family and community engagement but also revealed some limitations that need to be addressed. In total, 42 of 51 (82%) patients described themselves as satisfied or very satisfied. Health care providers reported facilitated communication with colleagues and the need to support data quality.ConclusionsThe experimented solution addressed some of the health system challenges mentioned by the World Health Organization: usability appears to be significantly improved when the GUI is designed according to patients' UCD mental models and when new media and medical literacy are promoted. This makes it possible to maximize the impact of eHealth products, thereby overcoming some crucial gaps reported in the literature. Two main features seemed to have potential benefit compared with other eHealth products: the modeling, within the app, of both the formal and informal health care support networks and the modular structure allowing for comorbidity management, both of which require further implementation.

Project description:BackgroundTo design and test a web-based self-management tool for patients with type 2 diabetes for its usability and feasibility.MethodsAn evidence-based, theory-driven website was created for patients with type 2 diabetes. Twenty-three patients with type 2 diabetes aged ? 25 years were recruited from 2 diabetes care centers in Toronto, Canada. We employed focus group methodology to assess acceptability, sustainability, strengths and weaknesses of the self-management website. Based on these results, revisions were made to the website. Three cycles of individual usability testing sessions using cognitive task analysis were conducted with patients with type 2 diabetes. Revisions to the website were made based on results from this testing.ResultsWe identified five themes concerning participants' experiences of health care and related unmet needs: 1) Desire for information and for greater access to timely and personalized care to gain a sense of control of their disease; 2) Desire for community (sharing experiences with others) to fulfill practical and emotional needs; 3) Potential roles of an online self-management website in self-empowerment, behavior change, self-management and health care delivery; 4) Importance of a patient-centered perspective in presenting content (e.g. common assumptions, medical nomenclature, language, messaging, sociocultural context); 5) Barriers and facilitators to use of a self-management website (including perceived relevance of content, incorporation into usual routine, availability for goal-directed use, usability issues).ConclusionsParticipants outlined a series of unmet health care needs, and stated that they wanted timely access to tailored knowledge about their condition, mechanisms to control and track their disease, and opportunities to share experiences with other patients. These findings have implications for patients with type 2 diabetes of diverse ages, socioeconomic backgrounds, and disease severity, as well as to the design of other computer-based resources for chronic disease management.

Project description:BackgroundMobile health (mHealth) apps for children are increasing in availability and scope. Therapy (physiotherapy, speech pathology, and occupational therapy) prescription apps to improve home or school program adherence work best when developed to be highly engaging for children and when they incorporate behavior change techniques (BCTs) within their design.ObjectiveThe aim of this study was to describe the development of a user-centered therapy prescription app for children (aged 6-12 years) with neurodevelopmental disabilities (eg, cerebral palsy, autism spectrum disorder, and intellectual disability) incorporating intervention mapping (IM) and gamified design.MethodsWe used an iterative, user-centered app development model incorporating the first 3 steps of IM. We conducted a needs analysis with user feedback from our previous mHealth app study, a literature review, and a market audit. Change objectives were then specified in alignment with the psychological needs of autonomy, competence, and relatedness identified in self-determination theory. From these objectives, we then selected BCTs, stipulating parameters for effectiveness and how each BCT would be operationalized. A gamification design was planned and implemented focusing on maximizing engagement in children. In total, 2 rounds of consultations with parents, teachers, and therapists and 1 round of prototype app testing with children were conducted to inform app development, with a final iteration developed for further testing.ResultsThe IM process resulted in the specification of app elements, self-determination theory-informed BCTs, that were embedded into the app design. The gamification design yielded the selection of a digital pet avatar with a fantasy anime visual theme and multiple layers of incentives earned by completing prescribed therapy activities. Consultation groups with professionals working with children with disabilities (4 therapists and 3 teachers) and parents of children with disabilities (n=3) provided insights into the motivation of children and the pragmatics of implementing app-delivered therapy programs that informed the app development. User testing with children with disabilities (n=4) highlighted their enthusiasm for the app and the need for support in the initial phase of learning the app. App quality testing (Mobile Application Rating Scale-user version) with the children yielded means (out of 5) of 4.5 (SD 0.8) for engagement, 3.3 (SD 1.6) for function, 3.3 (SD 1.7) for aesthetics, and 4.3 (SD 1.1) for subjective quality.ConclusionsmHealth apps designed for children can be greatly enhanced with a systematic yet flexible development process considering the specific contextual needs of the children with user-centered design, addressing the need for behavior change using the IM process, and maximizing engagement with gamification and strong visual design.

Project description:BackgroundAccounting for how end users engage with technologies is imperative for designing an efficacious mobile behavioral intervention.ObjectiveThis mixed methods analysis examined the translational potential of user-centered design and basic behavioral science to inform the design of a new mobile intervention for obesity and binge eating.MethodsA total of 22 adults (7/22, 32% non-Hispanic White; 8/22, 36% male) with self-reported obesity and recurrent binge eating (≥12 episodes in 3 months) who were interested in losing weight and reducing binge eating completed a prototyping design activity over 1 week. Leveraging evidence from behavioral economics on choice architecture, participants chose treatment strategies from 20 options (aligned with treatment targets composing a theoretical model of the relation between binge eating and weight) to demonstrate which strategies and treatment targets are relevant to end users. The process by which participants selected and implemented strategies and their change in outcomes were analyzed.ResultsAlthough prompted to select one strategy, participants selected between 1 and 3 strategies, citing perceived achievability, helpfulness, or relevance as selection reasons. Over the week, all practiced a strategy at least once; 82% (18/22) struggled with implementation, and 23% (5/22) added a new strategy. Several themes emerged on successes and challenges with implementation, yielding design implications for supporting users in behavior change. In postexperiment reflections, 82% (18/22) indicated the strategy was helpful, and 86% (19/22) planned to continue use. One-week average within-subject changes in weight (-2.2 [SD -5.0] pounds) and binge eating (-1.6 [SD -1.8] episodes) indicated small clinical improvement.ConclusionsApplying user-centered design and basic behavioral science yielded design insights to incorporate personalization through user choice with guidance, which may enhance engagement with and potential efficacy of digital health interventions.

Project description:BackgroundOne in five U.S. adults lives with some kind of mental health condition and 4.6% of all U.S. adults have a serious mental illness. The Internet has become the first place for these people to seek online mental health information for help. However, online mental health information is not well-organized and often of low quality. There have been efforts in building evidence-based mental health knowledgebases curated with information manually extracted from the high-quality scientific literature. Manual extraction is inefficient. Crowdsourcing can potentially be a low-cost mechanism to collect labeled data from non-expert laypeople. However, there is not an existing annotation tool integrated with popular crowdsourcing platforms to perform the information extraction tasks. In our previous work, we prototyped a Semantic Text Annotation Tool (STAT) to address this gap.ObjectiveWe aimed to refine the STAT prototype (1) to improve its usability and (2) to enhance the crowdsourcing workflow efficiency to facilitate the construction of evidence-based mental health knowledgebase, following a user-centered design (UCD) approach.MethodsFollowing UCD principles, we conducted four design iterations to improve the initial STAT prototype. In the first two iterations, usability testing focus groups were conducted internally with 8 participants recruited from a convenient sample, and the usability was evaluated with a modified System Usability Scale (SUS). In the following two iterations, usability testing was conducted externally using the Amazon Mechanical Turk (MTurk) platform. In each iteration, we summarized the usability testing results through thematic analysis, identified usability issues, and conducted a heuristic evaluation to map identified usability issues to Jakob Nielsen's usability heuristics. We collected suggested improvements in the usability testing sessions and enhanced STAT accordingly in the next UCD iteration. After four UCD iterations, we conducted a case study of the system on MTurk using mental health related scientific literature. We compared the performance of crowdsourcing workers with two expert annotators from two aspects: efficiency and quality.ResultsThe SUS score increased from 70.3 ± 12.5 to 81.1 ± 9.8 after the two internal UCD iterations as we improved STAT's functionality based on the suggested improvements. We then evaluated STAT externally through MTurk in the following two iterations. The SUS score decreased to 55.7 ± 20.1 in the third iteration, probably because of the complexity of the tasks. After further simplification of STAT and the annotation tasks with an improved annotation guideline, the SUS score increased to 73.8 ± 13.8 in the fourth iteration of UCD. In the evaluation case study, on average, the workers spent 125.5 ± 69.2 s on the onboarding tutorial and the crowdsourcing workers spent significantly less time on the annotation tasks compared to the two experts. In terms of annotation quality, the workers' annotation results achieved average F1-scores ranged from 0.62 to 0.84 for the different sentences.ConclusionsWe successfully developed a web-based semantic text annotation tool, STAT, to facilitate the curation of semantic web knowledgebases through four UCD iterations. The lessons learned from the UCD process could serve as a guide to further enhance STAT and the development and design of other crowdsourcing-based semantic text annotation tasks. Our study also showed that a well-organized, informative annotation guideline is as important as the annotation tool itself. Further, we learned that a crowdsourcing task should consist of multiple simple microtasks rather than a complicated task.

Project description:BackgroundSmoking prevalence during and after pregnancy remains high among socioeconomically disadvantaged women. Mobile health (mHealth) apps with game and social support elements seem promising to support smoking cessation.ObjectiveThis study aims to describe the user-centered design and usability evaluation of Kindle, an mHealth app with game and social support elements, to support disadvantaged young women during and after pregnancy through the first stages of smoking cessation.MethodsDisadvantaged women (n=9), members of their social networks (n=4), and nurses supporting these women (n=51) were informants throughout the iterative prototype development of Kindle according to the International Organization for Standardization 9241-11:2018. Specific phases included understanding the context of use through secondary analysis of qualitative interview data (phase 1), establishing the user and organizational requirements (phase 2), production of design solutions (phase 3), and usability inspection of the prototype through a heuristic evaluation (3 experts) along with user testing by a think aloud method (5 disadvantaged women and 5 nurses; phase 4). Usability problems were categorized according to the principles of the Healthcare Information and Management Systems Society.ResultsPhase 1 resulted in an understanding of the VoorZorg program and the needs of VoorZorg nurses and clients (eg, focus on early stages of change and building new supportive networks to aid clients in smoking cessation). In phase 2, we established requirements (n=22; eg, mHealth app, secure communication between nurses and clients, easy-to-use interfaces, inclusion of game elements, and tailoring at early stages of change in smoking cessation). Phase 3 resulted in a prototype of Kindle, combining the interface for nurses and clients, including the following functionalities: personal goal setting with earning points; secured chat function between nurses and other clients; and tips, diary, and profile creation. The heuristic evaluation and thinking aloud method in phase 4 revealed 78 usability problems in the interfaces. Most usability problems concerned simplicity (eg, unclear clickable button) and naturalness (eg, unclear icon).ConclusionsThe user-centered design and usability testing of the mHealth app Kindle yielded useful insights. The involvement of end users, specifically socioeconomically disadvantaged women during and after their pregnancy, resulted in a prototype that met their needs and requirements (eg, mHealth app, secure communication between nurses and clients, easy-to-use interfaces, inclusion of game elements, and tailoring to the early stages of change in smoking cessation) to achieve readiness for smoking cessation. Moreover, the usability evaluation by end users and experts revealed unique usability problems for this population. These insights allow for further optimization of Kindle and encourage future studies to engage disadvantaged populations in all phases of mHealth intervention design and usability testing.

Dataset Information

A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design.

Publications

A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets