BackgroundA 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.ObjectivesThis 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.MethodsA 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.ResultsAll 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.ConclusionsWe 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.
Background: Our objective was to investigate time perception in Attention‐Deficit/Hyperactivity Disorder (ADHD) with and without comorbid reading difficulties (RD) in child and adolescent participants. Method: In study 1, 50 children with ADHD (31 ADHD, 19 ADHD+RD) and age‐matched healthy controls (n = 50) completed three psychophysical tasks: duration discrimination (target duration of 400 ms versus a foil duration), frequency discrimination (a control condition to evaluate general perceptual ability), and a duration estimation task using the method of reproduction for intervals of 400 ms, 2000 ms, and 6000 ms. Study 2 used the same tasks with an adolescent sample (35 ADHD, 24 ADHD+RD, 39 controls). Results: In both studies, children and adolescents with ADHD and ADHD+RD displayed some impairments in duration discrimination and the precision with which they reproduced the intervals on the estimation task, particularly the shorter 400 ms interval. The most severe impairments tended to occur in the comorbid ADHD+RD group. No impairments were found on the frequency discrimination task. ADHD participants also displayed significant intra‐individual variability in their performance on the estimation task. Finally, short‐term and working memory, estimated full‐scale IQ, and teacher report of hyperactivity/impulsivity were found to differentially predict performance on the time perception measures in the adolescent clinical sample. Conclusions: Deficits in duration discrimination, duration estimation, and intra‐individual performance variability may have cascaded effects on the temporal organisation of behaviour in children and adolescents with ADHD and ADHD+RD.
The current study evaluated an online education and support website intervention for adolescents with Type 1 diabetes. Participants were enrolled in an 8-week, online program addressing diabetes-related issues for adolescents. The evaluation comprised an intervention trial in which participants were assigned to an intervention or control group, and pre- and post-intervention measures of social support were administered. Outcomes indicated interventional gains approaching significance in participants' quality of relationships with others external to their family. Post-intervention qualitative interviews with intervention group participants identified beneficial impacts of decreased isolation, knowledge gain, and normalization of experience. Findings suggest that online information and support is an important resource in augmenting clinical care. Implications and recommendations for clinical practice are discussed.
The cerebellum is important for perceptual and motor timing in the mature brain, but the timing function of the cerebellum in the immature brain is less well understood. We investigated timing in children with spina bifida meningomyelocele (SB), a neural tube defect that involves cerebellar dysgenesis, and in age-matched controls. Specifically, we studied perceptual timing (judgements of 400 ms duration) and motor timing (isochronous motor tapping); measured cerebellar volumes; and related perceptual and motor timing to each other and to cerebellar volume measurements. Children with SB had impairments in the perception of duration (around 400 ms) but not frequency (around 3000 Hz), showing that their perceptual timing deficit was not a generalized auditory impairment. Children with SB had motor timing deficits on unpaced but not paced isochronous tapping, and their unpaced timing performance was associated with clock variance rather than with motor implementation. Perceptual and motor timing were correlated, suggesting that children with SB have impairments in a central timing mechanism. Children with SB, especially those with upper spinal cord lesions, had significant cerebellar volume reductions in grey and white matter, as well as different regional patterns of grey matter, white matter and CSF. Duration perception was correlated with cerebellar volumes, and the number of valid tapping trials was correlated with cerebellar volumes in the SB group, which data demonstrate structure-function relations between timing and cerebellar volumes.
BackgroundAlthough numerous evidence-based and feasible interventions are available to treat pain from childhood vaccine injections, evidence indicates that children are not benefitting from this knowledge. Unrelieved vaccination pain puts children at risk for significant long-term harms including the development of needle fears and subsequent health care avoidance behaviours. Parents report that while they want to mitigate vaccination pain in their children, they lack knowledge about how to do so. An evidence-based clinical practice guideline for managing vaccination pain was recently developed in order to address this knowledge-to-care gap. Educational tools (pamphlet and video) for parents were included to facilitate knowledge transfer at the point of care. The objectives of this study were to evaluate usability and effectiveness in terms of knowledge acquisition from the pamphlet and video in parents of newly born infants.MethodsMixed methods design. Following heuristic usability evaluation of the pamphlet and video, parents of newborn infants reviewed revised versions of both tools and participated in individual and group interviews and individual knowledge testing. The knowledge test comprised of 10 true/false questions about the effectiveness of various pain management interventions, and was administered at three time points: at baseline, after review of the pamphlet, and after review of the video.ResultsThree overarching themes were identified from the interviews regarding usability of these educational tools: receptivity to learning, accessibility to information, and validity of information. Parents’ performance on the knowledge test improved (p≤0.001) from the baseline phase to after review of the pamphlet, and again from the pamphlet review phase to after review of the video.ConclusionsUsing a robust testing process, we demonstrated usability and conceptual knowledge acquisition from a parent-directed educational pamphlet and video about management of vaccination pain. Future studies are planned to determine the impact of these educational tools when introduced in clinical settings on parent behaviors during infant vaccinations.
There was a relation between everyday mathematics, reading skills, and quality of life. The consequences of the physical, medical, and cognitive effects of spina bifida extend into young adulthood and have an impact on quality of life.
Arterial ischemic stroke is approximately four times more prevalent than sinovenous thrombosis and has been associated with a worse neurologic outcome than sinovenous thrombosis; however, no data are available comparing intellectual outcome after pediatric arterial ischemic stroke and sinovenous thrombosis. We report the short-term intellectual outcome (mean 5.8 months since stroke) in a sample of 72 children, 47 with arterial ischemic stroke, and 25 with sinovenous thrombosis. Intellectual outcome measures were the Full-Scale IQ of the age-appropriate Wechsler intelligence test for older children and the Mental Developmental Index of the Bayley Scales of Infant Development for younger children. Stroke type did not directly influence intellectual outcome. Intellectual outcome was in the normal range whether the children had suffered an arterial ischemic stroke or a sinovenous thrombosis.
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