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JMIR Pediatrics and Parenting
Improving pediatric and adolescent health outcomes and empowering and educating parents
(Toronto, Aug 31st, 2019) We are pleased to report that JMIR Pediatrics and Parenting (JPP) has been accepted for indexing in PubMed Central and PubMed. The staff at PubMed Central is currently finalizing the setup and we expect all articles published since Vol 1 / Iss 1 to be in PubMed Central and PubMed within the next couple of weeks. The acceptance is the result of a rigorous scientific and technical evaluation by the US National Library's (NLM’s) Library Operations Division, which decided that the scientific and editorial character and quality of a JMIR Pediatrics and Parenting merits its inclusion in PMC. In making this decision NLM has considered the suitability of the journal for the NLM collection as well as the opinions of expert consultants.
JMIR Pediatrics and Parenting (JPP) is a new journal of JMIR Publications. JPP has a unique focus on technologies, medical devices, apps, engineering, informatics applications for patient/parent education, training, counselling, behavioral interventions, preventative interventions and clinical care for pediatric and adolescent populations or child-parent dyads. JPP recognizes the role of patient- and parent-centered approaches in the 21st century using information and communication technologies to optimize pediatric and adolescent health outcomes.
As an open access journal, we are read by clinicians, patients, and parents/caregivers alike. We, as all journals published by JMIR Publications, have a focus on applied science reporting the design and evaluation of health innovations and emerging technologies. We publish original research, viewpoints, and reviews (both literature reviews and medical device/technology/app reviews). The journal is indexed in PMC and PubMed. JPP has no submission fee.
Background: Pediatric medical conditions have the potential to result in challenging psychological symptoms (eg, anxiety, depression, and posttraumatic stress symptoms [PTSS]) and impaired health-related quality of life in youth. Thus, effective and accessible interventions are needed to prevent and treat psychological sequelae associated with pediatric medical conditions. Electronic health (eHealth) interventions may help to meet this need, with the capacity to reach more children and families than in-person interventions. Many of these interventions are in their infancy, and we do not yet know what key components contribute to successful eHealth interventions.
Objective: The primary objective of this study was to conduct a systematic review to summarize current evidence on the efficacy of eHealth interventions designed to prevent or treat psychological sequelae in youth with medical conditions.
Methods: MEDLINE (PubMed) and PsycINFO databases were searched for studies published between January 1, 1998, and March 1, 2019, using predefined search terms. A total of 2 authors independently reviewed titles and abstracts of search results to determine which studies were eligible for full-text review. Reference lists of studies meeting eligibility criteria were reviewed. If the title of a reference suggested that it might be relevant for this review, the full manuscript was reviewed for inclusion. Inclusion criteria required that eligible studies (1) had conducted empirical research on the efficacy of a Web-based intervention for youth with a medical condition, (2) had included a randomized trial as part of the study method, (3) had assessed the outcomes of psychological sequelae (ie, PTSS, anxiety, depression, internalizing symptoms, or quality of life) in youth (aged 0-18 years), their caregivers, or both, (4) had included assessments at 2 or more time points, and (5) were available in English language.
Results: A total of 1512 studies were reviewed for inclusion based on their title and abstracts; 39 articles qualified for full-text review. Moreover, 22 studies met inclusion criteria for the systematic review. Of the 22 included studies, 13 reported results indicating that eHealth interventions significantly improved at least one component of psychological sequelae in participants. Common characteristics among interventions that showed an effect included content on problem solving, education, communication, and behavior management. Studies most commonly reported on child and caregiver depression, followed by child PTSS and caregiver anxiety.
Conclusions: Previous research is mixed but suggests that eHealth interventions may be helpful in alleviating or preventing problematic psychological sequelae in youth with medical conditions and their caregivers. Additional research is needed to advance understanding of the most powerful intervention components and to determine when and how to best disseminate eHealth interventions, with the goal of extending the current reach of psychological interventions.
Background: Adolescents and young adults with spina bifida (AYA-SBs) have unique user needs, given their variable and complex symptom profile. Owing to multiple barriers to prevention and intervention treatments for secondary conditions (eg, obesity), AYA-SBs may benefit from the use of behavioral intervention technologies (BITs). However, as BITs are often designed and tested with typically developing individuals, it is unclear if existing BITs may be usable for AYA-SBs.
Objective: This study aimed to evaluate the usability of a high-quality, publicly available, weight management–focused mobile BIT (smartphone app) for AYA-SBs.
Methods: Overall, 28 AYA-SBs attending a Young Men’s Christian Association–based summer camp completed 4 structured usability tasks using a weight management app designed for the general public called My Diet Coach (Bending Spoons). Learnability was measured by (1) time to complete task, (2) number of user errors, and (3) correct entry of data when requested by the app. Satisfaction and general usability were measured via self-reported questionnaires and qualitative feedback following interactions with the app.
Results: The majority of the sample were able to complete the tasks, with increased completion rates and improved times on second attempts of the tasks (Ps<.05). Errors were common, and discrepancies emerged between quantitative and qualitative feedback such that self-reported measures indicated dissatisfaction but qualitative feedback was generally positive. Suggested improvements to the app included (1) tutorials, (2) simplifying the design, (3) more activity options for those who ambulate by wheelchair, and (4) notifications to prompt use.
Conclusions: AYA-SBs were able to learn how to complete specific tasks independently on a weight management app, but design changes consistent with previously proposed user needs were recommended. Rather than designing entirely new BITs, it may be possible to adapt existing technologies to personalize BITs for specific populations such as AYA-SBs.
Background: Advances in virtual reality (VR) technology offer new opportunities to design supports for the core behaviors associated with autism spectrum disorder (ASD) that promote progress toward optimal outcomes. Floreo has developed a novel mobile VR platform that pairs a user receiving instruction on target skills with an adult monitor. Objective: The primary objective of this pilot study was to explore the feasibility of using Floreo’s Joint Attention Module in school-aged children with autism in a special education setting. A secondary objective was to explore a novel joint attention measure designed for use with school-aged children and to observe whether there was a suggestion of change in joint attention skills from preintervention to postintervention. Methods: A total of 12 participants (age range: 9 to 16 years) received training with the Joint Attention Module for 14 sessions over 5 weeks. Results: No serious side effects were reported, and no participants dropped out of the study because of undesirable side effects. On the basis of monitor data, 95.4% (126/132) of the time participants tolerated the headset, 95.4% (126/132) of the time participants seemed to enjoy using Floreo’s platform, and 95.5% (128/134) of the time the VR experience was reported as valuable. In addition, scoring of the joint attention measure suggested a positive change in participant skills related to the total number of interactions, use of eye contact, and initiation of interactions. Conclusions: The study results suggest that Floreo’s Joint Attention Module is safe and well tolerated by students with ASD, and preliminary data also suggest that its use is related to improvements in fundamental joint attention skills.
Background: The prevalence of Autism Spectrum Disorder (ASD) appears to be increasing globally due to the complex interaction of multiple biopsychosocial and environmental factors. Mobile phones, tablets, and other electronic gadgets have transformed our means of communication, and have also changed both healthcare and how we learn. These technological enhancements may have a positive impact on the lives of children, but there is currently a global scarcity of information on how information technology influences the education of children with ASD. Objective: This study was conducted in Rwandan schools and communities, and aimed to understand the perceptions of students with ASD, their parents, and their teachers, on the use of Information and Communication Technology (ICT) in the education of those with ASD. Methods: This qualitative descriptive study was conducted from December 2017 to July 2018. Researchers conducted four focus group discussions (FGDs) with 54 participants from different backgrounds: teachers, parents, and students with ASD. Each of the FGDs took approximately two and a half hours. A predefined set of open-ended questions were selected to discover people’s perceptions regarding assistive technologies used in ASD, their effectiveness, the scope of using them in their context, and upcoming challenges during implementation. The interviews were recorded, transcribed, and analyzed. Results: The findings of the study revealed seven key themes: (1) the use of ICT for the education of children with ASD; (2) existing augmentative facilities for learning; (3) current patterns of use of ICT in education; (4) preferred areas of learning for ASD students; (5) integration of ICT into educational programs; (6) areas of interest outside the classroom; and (7) future opportunities and challenges in Rwanda. We found most of the study participants assumed that appropriate technology and related innovations might solve the challenges faced by learners with ASD in classrooms. Moreover, they thought that children with ASD more so enjoyed watching television, playing digital games, and drawing objects using gadgets than interacting with people or playing with other children. Conclusions: The use of various low-cost technical devices can aid with teaching and the education of children with autism in Rwanda. However, this area requires further research to discover the impact ICT can have on the education of children with ASD, so this study may become a starting point for further research in the area.
Background: Social concern with teen pregnancy emerged in the 1970s, and today’s popular and professional health literature continues to draw on social norms that view teen pregnancy as a problem—for the teen mother, her baby, and society. It is unclear, however, how adolescents directly affected by teen pregnancy draw upon social norms against teen pregnancy in their own lives, whether the norms operate differently for girls and boys, and how these social norms affect pregnant or parenting adolescents. Objective: This research aims to examine whether and how US adolescents use, interpret, and experience social norms against teen pregnancy. Methods: Online ethnographic methods were used for the analysis of peer-to-peer exchanges from an online social network site designed for adolescents. Data were collected between March 2010 and February 2015 (n=1662). Thematic analysis was conducted using NVivo software. Results: American adolescents in this online platform draw on dominant social norms against teen pregnancy to provide rationales for why pregnancy in adolescence is wrong or should be avoided. Rationales range from potential socioeconomic harms to life-course rationales that view adolescence as a special, carefree period in life. Despite joint contributions from males and females to a pregnancy, it is primarily females who report pregnancy-related concerns, including experiences of bullying, social isolation, and fear. Conclusions: Peer exchange in this online forum indicates that American adolescents reproduce prevailing US social norms of viewing teen pregnancy as a social problem. These norms intersect with the norms of age, gender, and female sexuality. Female adolescents who transgress these norms experience bullying, shame, and stigma. Health professionals must ensure that strategies designed to prevent unintended adolescent pregnancy do not simultaneously create hardship and stigma in the lives of young women who are pregnant and parent their children.
Background: Families who cook, eat, and play together have been found to have more positive health outcomes. Interventions are needed that effectively increase these health-related behaviors. Technology is often incorporated in health-related interventions but is not always independently assessed. Objective: The objective of this study was to describe challenges and facilitators to incorporating technology into the iCook 4-H intervention program. Methods: Dyads (n=228) composed of children (mean 9.4, SD 0.7 years old) and an adult primary meal preparer (mean 39.0, SD 8 years) were randomly assigned to a control (n=77) or treatment group (n=151). All treatment group dyads participated in 6 in-person sessions designed to increase families cooking, eating, and playing together. We incorporated Web-based between-session technological components related to the curriculum content throughout the intervention. Assessments were completed by both groups at baseline and at 4, 12, and 24 months; they included measured anthropometrics for children, and online surveys about camera and website skill and use for dyads. Session leaders and participants completed open-ended process evaluations after each session about technological components. We computed chi-square analysis for sex differences in technological variables. We tested relationships between video posting frequency and outcomes of interest (cooking frequency, self-efficacy, and skills; dietary intake; and body mass index) with Spearman correlations. Process evaluations and open-ended survey responses were thematically analyzed for beneficial and inhibiting factors, including technological components in the curriculum. Results: Only 78.6% (81/103) of children and 68.3% (71/104) of adults reported always being comfortable accessing the internet postintervention. Boys reported being more comfortable than girls with technological tasks (P<.05). Children who posted more videos had a higher level of cooking skills at 4 months postintervention (r=.189, P=.05). Barriers to website usage reported most frequently by children were lack of accessibility, remembering, interactivity, motivation, time, and lack of parental encouragement. Conclusions: Incorporating technological supports, such as cameras and websites, into children’s programs may help produce improved outcomes. Identifying barriers to and patterns of technology usage need to be considered when developing future child health promotion interventions. Trial Registration: ISRCTN Registry ISRCTN54135351; https://www.isrctn.com/ISRCTN54135351
Background: Almost 80% of adolescents do not achieve 60 minutes or more of physical activity each day as recommended by current US national guidelines. There is a need to develop and promote interventions that increase physical activity among adolescents. With increased interest in digital technologies among adolescents, robotic-assisted platforms are a novel and engaging strategy to deliver physical activity interventions. Objective: This study sought to assess the potential acceptability of robotic-assisted exercise coaching among diverse youth and to explore demographic factors associated with acceptance. Methods: This pilot study used a cross-sectional survey design. We recruited adolescents aged 12-17 years at three community-based sites in Rochester, MN. Written informed consent was obtained from participants’ parents or guardians and participants gave consent. Participants watched a brief demonstration of the robotic system-human interface (ie, robotic human trainer). The exercise coaching was delivered in real time via an iPad tablet placed atop a mobile robotic wheel base and controlled remotely by the coach using an iOS device or computer. Following the demonstration, participants completed a 28-item survey that assessed sociodemographic information, smoking and depression history, weight, and exercise habits; the survey also included the eight-item Technology Acceptance Scale (TAS), a validated instrument used to assess perceived usefulness and ease of use of new technologies. Results: A total of 190 adolescents participated in this study. Of the participants, 54.5% were (103/189) male, 42.6% (81/190) were racial minorities, 5.8% (11/190) were Hispanic, and 28.4% (54/190) lived in a lower-income community. Their mean age was 15.0 years (SD 2.0). A total of 24.7% (47/190) of participants met national recommendations for physical activity. Their mean body mass index (BMI) was 21.8 kg/m2 (SD 4.0). Of note, 18.4% (35/190) experienced depression now or in the past. The mean TAS total score was 32.8 (SD 7.8) out of a possible score of 40, indicating high potential receptivity to the technology. No significant associations were detected between TAS score and gender, age, racial minority status, participant neighborhood, BMI, meeting national recommendations for physical activity levels, or depression history (P>.05 for all). Of interest, 67.8% (129/190) of participants agreed that they and their friends were likely to use the robot to help them exercise. Conclusions: This preliminary study found that among a racially and socioeconomically diverse group of adolescents, robotic-assisted exercise coaching is likely acceptable. The finding that all demographic groups represented had similarly high receptivity to the robotic human exercise trainer is encouraging for ultimate considerations of intervention scalability and reach among diverse adolescent populations. Next steps will be to evaluate consumer preferences for robotic-assisted exercise coaching (eg, location, duration, supervised or structured, choice of exercise, and/or lifestyle activity focus), develop the treatment protocol, and evaluate feasibility and consumer uptake of the intervention among diverse youth.
Background: Cyberbullying includes bullying behaviors on the Web; these behaviors are inconsistently measured and lack standardized definitions. The Uniform Definition of Bullying provides a consensus-based definition of bullying, and it highlights the need for an evidence-based definition of a model for cyberbullying. Objective: Toward understanding the key elements and constructs defining cyberbullying, the objective of this study was to develop a stakeholder-driven conceptual model of cyberbullying. Methods: Concept mapping is a validated research method that leverages both qualitative and quantitative approaches to integrate stakeholder input on complex topics. This process was used to develop a concept map and adapt it through participant input to a conceptual model. The validated concept mapping approach includes 5 steps: preparation, generation (brainstorming), structuring (sorting), representation (statistical analysis), and interpretation. We recruited stakeholder participants, including adolescents, as well as parents and professionals representing education, health, and the justice system. Analysis included hierarchical cluster analysis to develop a cluster map representing cyberbullying, followed by adaptation of that map to a conceptual model through qualitative participant feedback. Results: A total of 177 participants contributed to the concept mapping process, including 69% females, 50% adults, and 68% Caucasian, representing each of our stakeholder groups. A total of 228 brainstorming items were generated and sorted into a concept map that included 9 clusters. Clusters included topics that had strong overlap with traditional bullying, such as consequences for perpetrators and targets, with example items “alienating” and “crippling.” Some clusters were unique, such as cyberbullying techniques, with example item “excessive messaging,” and characteristics of the cyberbullying experience, with example item “constant.” Through the interpretation step, a conceptual model emerged, illustrating connections and distinctions between traditional bullying and cyberbullying. Conclusions: We found that in generating a stakeholder-driven concept map of cyberbullying, participants could not describe cyberbullying without integrating key concepts from traditional bullying. On the basis of our conceptual model, there are unique characteristics of cyberbullying that suggest that uniform definitions of bullying need to be evaluated to ensure their application to cyberbullying.
Background: Asthma is a chronic pulmonary disease with multiple triggers. It can be managed by strict adherence to an asthma care plan and by avoiding these triggers. Clinicians cannot continuously monitor their patients’ environment and their adherence to an asthma care plan, which poses a significant challenge for asthma management. Objective: In this study, pediatric patients were continuously monitored using low-cost sensors to collect asthma-relevant information. The objective of this study was to assess whether kHealth kit, which contains low-cost sensors, can identify personalized triggers and provide actionable insights to clinicians for the development of a tailored asthma care plan. Methods: The kHealth asthma kit was developed to continuously track the symptoms of asthma in pediatric patients and monitor the patients’ environment and adherence to their care plan for either 1 or 3 months. The kit consists of an Android app–based questionnaire to collect information on asthma symptoms and medication intake, Fitbit to track sleep and activity, the Peak Flow meter to monitor lung functions, and Foobot to monitor indoor air quality. The data on the patient’s outdoor environment were collected using third-party Web services based on the patient’s zip code. To date, 107 patients consented to participate in the study and were recruited from the Dayton Children’s Hospital, of which 83 patients completed the study as instructed. Results: Patient-generated health data from the 83 patients who completed the study were included in the cohort-level analysis. Of the 19% (16/83) of patients deployed in spring, the symptoms of 63% (10/16) and 19% (3/16) of patients suggested pollen and particulate matter (PM2.5), respectively, to be their major asthma triggers. Of the 17% (14/83) of patients deployed in fall, symptoms of 29% (4/17) and 21% (3/17) of patients suggested pollen and PM2.5, respectively, to be their major triggers. Among the 28% (23/83) of patients deployed in winter, PM2.5 was identified as the major trigger for 83% (19/23) of patients. Similar correlations were not observed between asthma symptoms and factors such as ozone level, temperature, and humidity. Furthermore, 1 patient from each season was chosen to explain, in detail, his or her personalized triggers by observing temporal associations between triggers and asthma symptoms gathered using the kHealth asthma kit. Conclusions: The continuous monitoring of pediatric asthma patients using the kHealth asthma kit generates insights on the relationship between their asthma symptoms and triggers across different seasons. This can ultimately inform personalized asthma management and intervention plans.
Background:
Mobile technology offers unique opportunities to reach people with health promotion interventions. Breastfeeding is an important public health issue, and fathers are a key support. Milk Man is a father-focused breastfeeding app that sought to engage fathers with information and conversation about breastfeeding, with the goal to impact positively on breastfeeding duration.
Methods:
The app used an information library, gamification, push notifications, and social connectivity via a Web-based conversation forum, which included polls and conversation starters, to engage fathers with breastfeeding information. Fathers had access to the app from approximately 32 weeks of gestation to 6 months postpartum. Process evaluation data were collected from a self-completed questionnaire administered via a Web-based link sent to participants at 6 weeks postpartum, and app analytics data were collected directly from the app. Quantitative data from both sources and qualitative responses to open-ended questions were used to triangulate findings to investigate patterns of usage and the effectiveness of each app engagement strategy to motivate and engage users.
Results:
A total of 80.3% (586/730) of participants, who were randomized to receive the app, downloaded Milk Man. Push notifications and interest in what other fathers had posted in the forum were the 2 main motivators to app use. Fathers used the app most while their partners were still pregnant and in the weeks immediately after the birth of their baby. Perspectives on the gamification strategy were varied. However, at 6 weeks postpartum, approximately one-third of fathers still using the app said that the gamification elements were encouraging the app use. The ease of use of the app and the design were important elements that were rated positively. The conversation forum emerged as the hub of app activity; all but 1 of the most accessed library articles and external organization links had been prompted as part of a conversation starter. Fathers posted comments in the conversation forum 1126 times (average of 2.21 per user) and voted in polls 3096 times (average of 6 per user).
Conclusions:
These results demonstrate that the Milk Man app was an acceptable source of breastfeeding information and support that fathers and fathers-to-be are prepared to use throughout the perinatal period. The app showed encouraging results with facilitating conversation between partners. The conversation forum was clearly central to the success of the app, and fathers provided suggestions for improvement. Gamification results were varied, yet it was a key motivator for some users. These results provide valuable insight into the acceptability of the engagement strategies, including motivations for use and user perspectives on the app.
Background:
Over 20,000 parents in the United States face the challenge of participating in decisions about whether to use life support for their infants born on the cusp of viability every year. Clinicians must help families grasp complex medical information about their baby’s immediate prognosis as well as the risk for significant long-term morbidity. Patients faced with this decision want supplemental information and frequently seek medical information on the Internet. Empirical evidence about the quality of websites is lacking.
Methods:
We read a counseling script to 20 pregnant participants that included information typically provided by perinatal and neonatal providers when periviable birth is imminent. The women were then asked to list terms they would use to search the Internet if they wanted additional information. Using these search terms, two reviewers evaluated the content of websites obtained via a Google search. We used two metrics to assess the quality of websites. The first was the DISCERN instrument, a validated questionnaire designed to assess the quality of patient-targeted health information for treatment choices. The second metric was the Essential Content Tool (ECT), a tool designed to address key components of counseling around periviable birth as outlined by professional organizations. DISCERN scores were classified as low quality if scores were 2, fair quality if scores were 3, and high quality if scores were 4 or higher. Scores of 6 or higher on the ECT were considered high quality. Interreviewer agreement was assessed by calculated kappa statistic.
Results:
A total of 97 websites were reviewed. Over half (57/97, 59%) were for-profit sites, news stories, or personal blogs; 28% (27/97) were government or medical sites; and 13% (13/97) were nonprofit or advocacy sites. The majority of sites scored poorly in DISCERN questions designed to assess the reliability of information presented as well as data regarding treatment choices. Only 7% (7/97) of the websites were high quality as defined by the DISCERN tool. The majority of sites did not address the essential content defined by the ECT. Importantly, only 18% of websites (17/97) indicated that there are often a number of reasonable approaches to newborn care when faced with periviable birth. Agreement was strong, with kappa ranging from .72 to .91.
Conclusions:
Most information about periviable birth found on the Internet using common search strategies is of low quality. News stories highlighting positive outcomes are disproportionately represented. Few websites discuss comfort care or how treatment decisions impact quality of life.
Background: Adolescents use social media for information on medical and social aspects of maturation. Objective: The aim of this study was to investigate the concerns and information needs of adolescents regarding menarche and first sexual intercourse. Methods: Questions about menarche or first sexual intercourse were obtained from Yahoo Answers, a community-based social media question-and-answer website. A total of 1226 questions were analyzed. We focused on 123 question pairs made by users who asked questions on both topics and reported their ages at each. Quantitative and qualitative analyses were performed on these question pairs. Results: Qualitative analysis identified uncertainty as a significant theme for both menarche and first intercourse. Quantitative analysis showed that uncertainty was expressed in 26% (13/50) of menarche questions and 14% (7/50) of intercourse questions. Lack of communication was expressed in 4% (2/50) of menarche questions, compared with 8% (4/50) of intercourse questions. Ages at menarche and at first sexual intercourse were correlated, with women reporting menarche at the age of 13 years or younger being 2.6 times more likely to experience first sexual intercourse before the age of 16 years (P<.001, chi-square test). Older age at menarche was associated with greater lack of communication with parents (analysis of variance, P=.002). Conclusions: The questions of adolescents on the topics of menarche and first sexual intercourse express anxiety and uncertainty and are associated with a lack of information and deficient communication with parents. The more normative and expected a behavior, the less these factors appear. Therefore, parents and educators should, to the extent possible, improve communication around these topics, especially when they occur at less typical ages.
