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JMIR Pediatrics and Parenting
Improving pediatric and adolescent health outcomes and empowering and educating parents
JMIR Pediatrics and Parenting (JPP) is a new sister journal of JMIR (the leading open-access journal in health informatics, Impact Factor 2018: 4.945). 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 JMIR journals, 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). JPP has no submission fee.
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.
Background:
Parental reflective functioning (PRF) is the capacity parents have to understand their own mental states and those of their children, as well as the influence of those mental states on behavior. Parents with greater capacity for PRF are more likely to foster secure attachment with their children. The Parental Development Interview is a gold standard measure of PRF but is hampered by cost, training, and length of administration. The 18-item Parent Reflective Functioning Questionnaire (PRFQ-18) is a simpler option developed to capture 3 types of PRF: (1) prementalizing, (2) parent’s certainty, and (3) interest and curiosity surrounding a child’s mental state.
Methods:
We examined the factor structure and discriminant and construct validity of the PRFQ-18 among 306 parents (males=120 and females=186) across Canada; the age range of children was 0 to 12 years. Parents also completed Web-based measures of perceived stress, parental coping, parenting competence, and social support.
Results:
A confirmatory factor analysis confirmed the hypothesized 3-factor structure of the PRFQ-18 providing evidence that the PRFQ-18 may be a useful and practical measure of PRF in Canadian adults and showed minor revisions may improve the suitability of the PRFQ-18 for assessing PRF.
Conclusions:
These results add support for the construct validity of the PRFQ-18.
Background:
Low milk production is one of the main reasons for premature breastfeeding cessation. Smartphone apps have the potential to assist mothers with promoting, interpreting, tracking, or learning about milk production. It is not known whether breastfeeding apps contain high-quality, engaging, and diverse content and features that could be used by mothers to increase their breastfeeding self-efficacy and answer their questions about milk production.
Methods:
Breastfeeding apps were identified in the Apple App Store. All features that assist mothers with tracking, promoting, or interpreting milk production in the first 0-6 months postpartum were noted. Every screen containing educational information about milk production was identified and saved for review. Images of mothers and caretakers within the selected screenshots were assessed. Three scoresheets informed by Social Cognitive Theory were created to evaluate all identified features, educational content, and images representing the breastfeeding experience.
Results:
Forty-one breastfeeding apps were reviewed. Only seven apps contained both features and educational content related to milk production. Thirteen apps that contained educational content related to milk production received a mean combined content and cultural diversity score of 15.3 of 78. Of the 48 photos reviewed in screenshots that contained educational content on milk production, 87.5% (n=42) were of white women and their infants. For-profit companies and large organizations were most likely to create free apps and apps that received high scores on the combined content and diversity or features scoresheet, respectively.
Conclusions:
Features and educational content related to milk production and breastfeeding imagery within breastfeeding apps were evaluated using three novel scoresheets informed by Social Cognitive Theory. Few apps contained both features that promote breastfeeding self-efficacy and high-quality, engaging, educational content with images of diverse caretakers. Thus, it is likely that parents, especially those from minority or low-income groups, have limited options when selecting a breastfeeding app. App developers could use the scoresheets and findings in this review to develop breastfeeding apps that assist mothers with interpreting, tracking, or learning about milk production through high-quality and engaging features, content, and imagery.
Background:
Youth with disabilities are more likely to live in poverty and be unemployed compared with youth without disabilities. Such trends are often a result of a lack of support, inaccessible jobs, environmental barriers, and discriminatory attitudes toward people with disabilities. Youth with disabilities also face barriers in accessing vocational preparation programs. One encouraging way that could help address challenges that youth encounter is by providing support through electronic mentoring (e-mentoring).
Methods:
We conducted a pilot randomized controlled trial (RCT) to evaluate our intervention, Empowering youth towards employment. Participants included youth aged 15 to 25 years who were randomly assigned to an experimental (mentored) or control (nonmentored) group. Our intervention involved having trained youth mentors (ie, near peers who also had a disability) lead Web-based discussion forums while offering peer support and resources, which involved 12 modules (3 topics a week for 4 weeks). Primary outcomes focused on implementation (ie, feasibility and acceptability), whereas secondary outcomes focused on effectiveness (ie, measures of self-determination, career maturity, and social support).
Results:
A total of 28 youth (mean age 19.62, SD 3.53; 14/28, 50% female) completed the RCT in 3 intervention groups and 2 control groups (intervention n=18, control n=10). Participants reported satisfaction with the program and that it was feasible and acceptable. Youth’s mean engagement level with the program was 6.44 (SD 2.33) for the experimental group and 5.56 (SD 3.53) for controls. Participants in the intervention group did not demonstrate any significant improvements in social support, career maturity, or self-determination compared with those in the control group. No adverse events were reported.
Conclusions:
The Empowering youth towards employment e-mentoring intervention needs further testing with a larger sample and different length of formats to understand how it may have an impact on employment outcomes for youth with disabilities.
Background:
Transfer from pediatric to adult care is a crucial period for adolescents with inflammatory bowel disease (IBD).
Methods:
Required transition skills and validated patient-reported outcome measures (PROMs) were identified via bibliographic search and clinical experience and were implemented into an existing eHealth program.
Results:
The following skills were identified: disease knowledge, social life, disease management, and making well-informed, health-related decisions. The PROMs included the following: self-efficacy (the IBD Self-Efficacy Scale—Adolescents), resilience (the 10-item Connor-Davidson Resilience Scale), response to stress (the Child Self-Report Responses to Stress—IBD), and self-management and health care transition skills (the Self-Management and Transition to Adulthood with Treatment questionnaire). Starting at age 14, the patient will be offered a 1-hour annual transition consultation with an IBD-specialized nurse. The consultation will be based on the results of the PROMs and will focus on the patient's difficulties. Patients will complete the PROMs on the eHealth program at home, allowing nurses and patients to prepare for the meeting. Symptom scores and medication will be filled out on the eHealth program to support disease self-management. The consultation will be a topic-centered dialogue with practical exercises. During routine outpatient visits with the provider, parents will be left out of half of the consultation when the patient is 16 years old; at 17 years old, the parents will not be present. At the transfer consultation, the pediatric provider, the adult gastroenterologist, the pediatric nurse, the patient, and the parents will be present to ensure a proper transfer.
Conclusions:
We have conducted a personalized eHealth transition concept consisting of basic elements that measure, train, and monitor the patients' transition readiness. The concept can be implemented and adjusted to local conditions.
Background:
A magnetic resonance image (MRI) is a diagnostic test that requires patients to lie still for prolonged periods within a claustrophobic and noisy environment. This can be difficult for children to tolerate, and often general anesthetic (GA) is required at considerable cost and detriment to patient safety. Virtual reality (VR) is a newly emerging technology that can be implemented at low cost within a health care setting. It has been shown to reduce fear associated with a number of high-anxiety situations and medical procedures.
Methods:
A freely accessible VR preparation resource was developed to prepare pediatric patients for their upcoming MRI. The resource consists of an app and supporting preparation book and used a series of panoramic 360 degree videos of the entire MRI journey, including footage from within the bore of the scanner. The app, deployed via the Android Play Store and iOS App Store, can be viewed on most mobile phones, allowing a child to experience an MRI in VR using an inexpensive Google Cardboard headset. The app contains 360 degree videos within an animated, interactive VR interface designed for 4 to 12-year-olds. The resource was evaluated as part of a clinical audit on 23 patients (aged 4 to 12 years), and feedback was obtained from 10 staff members. In 5 patients, the resource was evaluated as a tool to prepare patients for an awake MRI who otherwise were booked to have an MRI under GA.
Results:
The VR preparation resource has been successfully implemented at 3 UK institutions. Of the 23 patients surveyed, on a scale of 1 to 10, the VR resource was rated with a median score of 8.5 for enjoyment, 8 for helpfulness, and 10 for ease of use. All patients agreed that it made them feel more positive about their MRI, and all suggested they would recommend the resource to other children. When considering their experiences using the resource with pediatric patients, on a scale of 1 to 10, the staff members rated the VR resource a median score of 8.5 for enjoyment, 9 for helpfulness, and 9 for ease of use. All staff believed it could help prepare children for an awake MRI, thus avoiding GA. A successful awake MRI was achieved in 4 of the 5 children for whom routine care would have resulted in an MRI under GA.
Conclusions:
Our VR resource has the potential to relieve anxieties and better prepare patients for an awake MRI. The resource has potential to avoid GA through educating the child about the MRI process.
Background:
Youth with disabilities are at high risk of unemployment compared with youth without disabilities. They often encounter challenges in accessing vocational programs that meet their needs. One promising approach that could help to address barriers that youth encounter while also enhancing social support is through electronic mentoring (e-mentoring). Although there is an increase in e-mentoring for youth with disabilities, little is known about its impact for youth with physical disabilities.
Methods:
The Empowering Youth Towards Employment intervention was evaluated using a pilot randomized controlled trial (RCT). Youth, aged 15-21 years, with physical disabilities were randomly assigned to an intervention (ie, mentored) or control (ie, not mentored) group. Trained mentors (ie, near peers) with a physical disability led the online discussion forums and provided peer support and resources for 12 modules (1 topic per week over 12 weeks). Primary outcomes focused on self-determination, career maturity, and social support. We also explored program adherence and dosage, participant satisfaction, and areas for improvement.
Results:
A total of 13 youth (mean age 17.3 years, SD 1.88; 54%, 7/13 female) completed the RCT. In the intervention group (n=9), 56% (5/9) of the youth were females, and in the control group (n=4), 50% (2/4) of the youth were female. Participants reported satisfaction with the program and that it was feasible and acceptable. Participants’ mean engagement level with the program was 5.22 (SD 2.48) for the intervention group and 5.40 (SD 4.56) for controls. Participants in the intervention group demonstrated significant improvements in self-determination (t12=2.49; P<.04) compared with the control group. No adverse events were reported.
Conclusions:
The Empowering Youth Towards Employment is a promising intervention that enhances self-determination among youth with physical disabilities.
