RefCheck Maintenance Notice

On Monday, December 3, 2018, from 16:00-18:00 EST, RefCheck will be undergoing maintenance. RefCheck is the process where, during copyediting, all references are extracted from the manuscript file, parsed, matched against various databases (eg, PubMed and CrossRef), and automatically corrected. For more information on RefCheck, please visit our Knowledge Base.

Who will be affected?

Advertisement

Journal Description

JMIR Pediatrics and Parenting (JPP) is a new sister journal of JMIR (the leading open-access journal in health informatics (Impact Factor 2017: 4.671), with a unique focus on technologies, medical devices, apps, engineering, informatics applications for patient/parent education in pediatrics, training/counselling and behavioral interventions, preventative interventions and clinical care for children and adolescent populations or child-parent dyads. JPP recognizing that pediatrics in the 21st century should be a participatory process, involving parents and informal caregivers, and using information and communication technologies.

As an open access journal, we are read by clinicians and patients alike and have (as all JMIR journals) a focus on readable and 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).

During a limited period of time, there are no fees to publish in this journal. Articles are carfully copyedited and XML-tagged, ready for submission in PubMed Central.

Be a founding author of this new journal and submit your paper today!


 

Recent Articles:

  • kHealth System. Source: Figure 2 from https://pediatrics.jmir.org/2018/2/e11988; Copyright: the authors; License: Creative Commons Attribution (CC-BY).

    “How Is My Child’s Asthma?” Digital Phenotype and Actionable Insights for Pediatric Asthma

    Abstract:

    Background: In the traditional asthma management protocol, a child meets with a clinician infrequently, once in 3 to 6 months, and is assessed using the Asthma Control Test questionnaire. This information is inadequate for timely determination of asthma control, compliance, precise diagnosis of the cause, and assessing the effectiveness of the treatment plan. The continuous monitoring and improved tracking of the child’s symptoms, activities, sleep, and treatment adherence can allow precise determination of asthma triggers and a reliable assessment of medication compliance and effectiveness. Digital phenotyping refers to moment-by-moment quantification of the individual-level human phenotype in situ using data from personal digital devices, in particular, mobile phones. The kHealth kit consists of a mobile app, provided on an Android tablet, that asks timely and contextually relevant questions related to asthma symptoms, medication intake, reduced activity because of symptoms, and nighttime awakenings; a Fitbit to monitor activity and sleep; a Microlife Peak Flow Meter to monitor the peak expiratory flow and forced exhaled volume in 1 second; and a Foobot to monitor indoor air quality. The kHealth cloud stores personal health data and environmental data collected using Web services. The kHealth Dashboard interactively visualizes the collected data. Objective: The objective of this study was to discuss the usability and feasibility of collecting clinically relevant data to help clinicians diagnose or intervene in a child’s care plan by using the kHealth system for continuous and comprehensive monitoring of child’s symptoms, activity, sleep pattern, environmental triggers, and compliance. The kHealth system helps in deriving actionable insights to help manage asthma at both the personal and cohort levels. The Digital Phenotype Score and Controller Compliance Score introduced in the study are the basis of ongoing work on addressing personalized asthma care and answer questions such as, “How can I help my child better adhere to care instructions and reduce future exacerbation?” Methods: The Digital Phenotype Score and Controller Compliance Score summarize the child’s condition from the data collected using the kHealth kit to provide actionable insights. The Digital Phenotype Score formalizes the asthma control level using data about symptoms, rescue medication usage, activity level, and sleep pattern. The Compliance Score captures how well the child is complying with the treatment protocol. We monitored and analyzed data for 95 children, each recruited for a 1- or 3-month-long study. The Asthma Control Test scores obtained from the medical records of 57 children were used to validate the asthma control levels calculated using the Digital Phenotype Scores. Results: At the cohort level, we found asthma was very poorly controlled in 37% (30/82) of the children, not well controlled in 26% (21/82), and well controlled in 38% (31/82). Among the very poorly controlled children (n=30), we found 30% (9/30) were highly compliant toward their controller medication intake—suggesting a re-evaluation for change in medication or dosage—whereas 50% (15/30) were poorly compliant and candidates for a more timely intervention to improve compliance to mitigate their situation. We observed a negative Kendall Tau correlation between Asthma Control Test scores and Digital Phenotype Score as −0.509 (P<.01). Conclusions: kHealth kit is suitable for the collection of clinically relevant information from pediatric patients. Furthermore, Digital Phenotype Score and Controller Compliance Score, computed based on the continuous digital monitoring, provide the clinician with timely and detailed evidence of a child’s asthma-related condition when compared with the Asthma Control Test scores taken infrequently during clinic visits.

  • VisitU. Source: VisitU; Copyright: Stefan van Rooijen (founder of VisitU); License: Creative Commons Attribution (CC-BY).

    Home to Hospital Live Streaming With Virtual Reality Goggles: A Qualitative Study Exploring the Experiences of Hospitalized Children

    Abstract:

    Background: Being separated from home and relatives is a major stressor for children and adolescents when hospitalized. Children long for a manner to be distracted, pleasured, and socially connected during hospitalization. Different technological devices have been applied in health care to answer those needs. Both virtual reality (VR) and videoconferencing have proven their value in hospital wards and pediatrics. VisitU combines these 2 technologies innovatively. VisitU is a recently launched VR product enabling users to be virtually at home during hospitalization. Objective: This study aims to explore the experiences of hospitalized patients with the VR intervention of VisitU in addition to standard care. Methods: Over a 3-month period, a purposive sample of 10 patients hospitalized in the Radboudumc Amalia Children’s Hospital was included in this qualitative study. Semistructured interviews were performed, one before and one after the use of the VR device. Patients were asked open-ended questions concerning their experiences with VisitU on practical, cognitive, emotional, and social domains. The interviews were audiorecorded and transcribed verbatim. Atlas.ti was used to support the qualitative analysis. Furthermore, the inductive thematic analysis was done according to the 6-step procedure described by Braun and Clarke. Results: The following 6 main themes were the result of the qualitative analysis: “Being hospitalized,” “Expectations of VisitU,” “VisitU in use,” “VisitU, the benefits,” “The impact of VisitU,” and “Barriers when using VisitU.” The way VisitU was used by patients varied. The main benefits of VisitU were being somewhere else, being at home, and facilitating social connection. Limitations were experienced on the technical abilities, physical side effects, and complexity of use. Despite that, patients were positive about VisitU and unanimous in the view that they would like to use it again and advise other patients to use it. Conclusions: This study shows the positive experiences of pediatric patients with VR live streaming. VisitU brings together the needs of patients and possibilities of VR and videoconferencing; it offers patients a way out of the hospital. Nevertheless, practical and technical obstacles must be overcome and side effects are an area of further research.

  • Source: Freepik; Copyright: Freepik; URL: https://www.freepik.com/free-photo/woman-and-her-child-sitting-on-carpet-with-cellphone-and-laptop_2618113.htm#term=mom%20phone&page=2&position=15; License: Licensed by JMIR.

    Social Media Content About Children’s Pain and Sleep: Content and Network Analysis

    Abstract:

    Background: Social media is often used for health communication and can facilitate fast information exchange. Despite its increasing use, little is known about child health information sharing and engagement over social media. Objective: The primary objectives of this study are to systematically describe the content of social media posts about child pain and sleep and identify the level of research evidence in these posts. The secondary objective is to examine user engagement with information shared over social media. Methods: Twitter, Instagram, and Facebook were searched by members of the research team over a 2-week period using a comprehensive search strategy. Codes were used to categorize the content of posts to identify the frequency of content categories shared over social media platforms. Posts were evaluated by content experts to determine the frequency of posts consistent with existing research evidence. User engagement was analyzed using Netlytic, a social network analysis program, to examine visual networks illustrating the level of user engagement. Results: From the 2-week period, nearly 1500 pain-related and 3800 sleep-related posts were identified and analyzed. Twitter was used most often to share knowledge about child pain (639/1133, 56.40% of posts), and personal experiences for child sleep (2255/3008, 75.00% of posts). For both topics, Instagram posts shared personal experiences (53/68, 78% pain; 413/478, 86.4% sleep), Facebook group posts shared personal experiences (30/49, 61% pain; 230/345, 66.7% sleep) and Facebook pages shared knowledge (68/198, 34.3% pain; 452/1026, 44.05% sleep). Across platforms, research evidence was shared in 21.96% (318/1448) of pain- and 9.16% (445/4857) of sleep-related posts; 5.38% (61/1133) of all pain posts and 2.82% (85/3008) of all sleep posts shared information inconsistent with the evidence, while the rest were absent of evidence. User interactions were indirect, with mostly one-way, rather than reciprocal conversations. Conclusions: Social media is commonly used to discuss child health, yet the majority of posts do not contain research evidence, and user engagement is primarily one-way. These findings represent an opportunity to expand engagement through open conversations with credible sources. Research and health care communities can benefit from incorporating specific information about evidence within social media posts to improve communication with the public and empower users to distinguish evidence-based content better. Together, these findings have identified potential gaps in social media communication that may be informative targets to guide future strategies for improving the translation of child health evidence over social media.

  • Source: Image created by the Authors; Copyright: Andreas Hager; URL: http://pediatrics.jmir.org/2018/2/e11080/; License: Licensed by JMIR.

    Clinical Adoption of mHealth Technology to Support Pediatric Cystic Fibrosis Care in Sweden: Qualitative Case Study

    Abstract:

    Background: Mobile health (mHealth) technologies have potential to improve self-management and care co-ordination of pediatric chronic diseases requiring complex care, such as cystic fibrosis (CF). Barriers to implementation include the lack of support and infrastructure to use mHealth in the clinical microsystem. Coproducing mHealth technology with patients, clinicians, and designers may increase the likelihood of successful integration into the clinical setting. Objective: This study explored the development, adoption, and integration of a new, co-produced mHealth platform (Genia) for the management of pediatric CF in Sweden. Methods: A retrospective, qualitative case study approach was used. The case was defined as the process of introducing and using Genia at the Pediatric Cystic Fibrosis Center at Skåne University Hospital in Lund, Sweden. Data sources included interviews, presentations, meeting notes, and other archival documents created between 2014 and 2017. To be included, data sources must have described or reflected upon the Genia adoption process. Iterative content analysis of data source materials was conducted by 2 qualitatively trained researchers to derive themes characterizing the mHealth clinical adoption process. Results: In total, 4 core themes characterized successful clinical integration of Genia in Lund: cultural readiness to use mHealth; use of weekly huddles to foster momentum and rapid iteration; engagement in incremental “Genia Talk” to motivate patient adoption; and co-design approach toward pediatric chronic care. Conclusions: Principles of quality improvement, relational co-ordination, user-centered design, and coproduction can facilitate the integration of mHealth technology into clinical care systems for pediatric CF care.

  • Preschooler using an iPad. Source: Pixabay; Copyright: StockSnap; URL: https://pixabay.com/en/people-kid-baby-child-boy-toddler-2564425/; License: Public Domain (CC0).

    Mobile Device Use Among Rural, Low-Income Families and the Feasibility of an App to Encourage Preschoolers’ Physical Activity: Qualitative Study

    Abstract:

    Background: As mobile devices are becoming ubiquitous, technology-based interventions provide a promising strategy to positively influence health behaviors of families with young children. However, questions remain about the feasibility and acceptability of intervention delivery via mobile apps in low-income, rural settings and among families with preschoolers. Objective: The aims of this study were to understand the content and context of mobile device use for preschoolers; explore parent beliefs on this topic, including the acceptability of intervention delivery via mobile devices; and test a prototype of an app to encourage preschoolers’ physical activity with both parents and children. Methods: Parents (n=29) were recruited from 5 preschool centers in eastern, rural Colorado to complete a semistructured telephone interview regarding preschoolers’ mobile device use. A second sample of parents (n=31) was recruited from the same preschool centers to view the app prototype independently and provide feedback. A third sample of preschool children (n=24) was videotaped using the app in small groups to measure engagement and record their responses to the app. Results: Five key content areas emerged from the telephone interviews: (1) mobile devices are an important part of families’ everyday routines, and parents have parameters governing their use; (2) parents often use mobile devices as a tool for behavior management; (3) parents clearly distinguish between mobile device use for learning versus entertainment; (4) parents have an overarching desire for balance in regard to their child’s mobile device use; and (5) parents were generally supportive of the idea of using mobile apps for intervention delivery. From the app prototype testing with parents, participants reacted positively to the app and felt that it would be useful in a variety of situations. Testing with preschoolers showed the children were highly engaged with the app and a majority remained standing and/or actively moving through the entire length of the app. Conclusions: Mobile devices are already integrated into most families’ daily routines and appear to be an acceptable method of intervention delivery in low-income families in rural Colorado. The physical activity app represents an innovative way to reach these families and, with further improvements based on participant feedback, will provide children with a unique opportunity to practice key movement skills.

  • Smoking and drinking during pregnancy. Source: Flickr; Copyright: Andrew Vargas; URL: https://www.flickr.com/photos/45665234@N00/4366052571; License: Creative Commons Attribution (CC-BY).

    Substance Use Among Young Mothers: An Analysis of Facebook Posts

    Abstract:

    Background: Substance use among young pregnant women is a common and significant public health concern associated with a number of adverse outcomes for both mothers and infants. Social media posts by young women can provide valuable, real-world insight into their perceptions of substance use immediately before and during pregnancy. Objective: The aim of this study was to characterize the frequency and content of posts regarding substance use in the year before pregnancy and during pregnancy among young mothers. Methods: Facebook posts were mined from young pregnant women (age, 16-24 years) who consented from 2 Midwest primary care clinics that serve a predominantly low-income community. Natural language processing was used to identify posts related to substance use by keyword searching (eg, drunk, drugs, pot, and meth). Using mixed-methods techniques, 2 investigators iteratively coded and identified major themes around substance use from these mined Facebook posts. Outcome measures include the frequency of posts and major themes expressed regarding substance use before and during pregnancy. Results: Women in our sample (N=43) had a mean age of 21 (SD 2.3) years, and the largest subgroup (21/43, 49%) identified as non-Hispanic black; 26% (11/43) identified as non-Hispanic white; 16% (7/43) as Hispanic; and 9% (4/43) as non-Hispanic mixed race, Native American, or other. The largest subgroup (20/43, 47%) graduated high school without further education, while 30% (13/43) completed only some high school and 23% (10/43) completed at least some postsecondary education. Young women discussed substance use on social media before and during pregnancy, although compared with the year before pregnancy, the average frequency of substance-related posts during pregnancy decreased. Themes identified included craving alcohol or marijuana, social use of alcohol or marijuana, reasons for abstaining from substance use, and intoxication. Conclusions: Facebook posts reveal that young pregnant women discuss the use of substances, predominantly alcohol and marijuana. Future work can explore clinical opportunities to prevent and treat substance use before and during pregnancy among young, at-risk mothers.

  • The fertility preservation decision aid hosted on The Royal Children's Hospital website (montage). Source: The Authors / Placeit; Copyright: JMIR Publications; URL: http://pediatrics.jmir.org/2018/2/e10463/; License: Creative Commons Attribution (CC-BY).

    Fertility Preservation in Children and Adolescents With Cancer: Pilot of a Decision Aid for Parents of Children and Adolescents With Cancer

    Abstract:

    Background: Future infertility is a significant concern for survivors of childhood and adolescent cancer. Children and adolescents may have the opportunity to undergo fertility preservation (FP) procedures (which preserve gonadal tissue or gametes for future use) prior to the cancer treatment. However, the decision is very complex, as it is often made by parents as proxy decision makers at the time of cancer diagnosis, and is time-sensitive (needing to occur before the cancer treatment begins). Furthermore, FP procedures in children and adolescents are experimental and cannot guarantee future fertility. An uninformed decision may result in future decision regret. Objective: This study aimed to assess the acceptability, usability, and feasibility of a Web-based FP decision aid (DA) in parents of children and adolescents with cancer and clinicians. Fertility knowledge and decision regret were compared in families who reviewed the DA compared with those who did not. Methods: The Web-based DA was developed according to the International Patient Decision Aid Standards. A cross-sectional study of parents of patients with cancer, who discussed fertility, and clinicians at a tertiary children’s hospital was undertaken. The acceptability, usability, and feasibility of the DA were assessed using a pre-post survey design. Measures included the validated Decision Regret Scale, a purpose-designed fertility-related knowledge scale, questions regarding satisfaction with the DA, and open-ended responses for additional feedback. Furthermore, clinicians involved in FP were also invited to review the DA. Results: We enrolled 34 parents and 11 clinicians in this study. Participants who reviewed the DA (15 parents and 11 clinicians) expressed satisfaction with its content and functionality. Parents reported an improved understanding of cancer treatments, infertility, and FP procedures and did not report greater decision regret after DA review. Most parents (13/15, 86%) would recommend the DA to other parents. All clinicians had a consensus that this was a valid and relevant information source for all involved in fertility care. Conclusions: It is an international standard of care to discuss the impact of cancer treatment on fertility before cancer treatment. This is the first fertility DA for parents of children and adolescents with cancer and is found to be relevant and acceptable by parents and clinicians. This DA has the potential to help support parents to make informed fertility-related decisions for their children and adolescents. However, future research is needed to assess the impact of the DA on prospective decision making.

  • Source: Pixabay; Copyright: PublicDomainPictures; URL: https://pixabay.com/en/baby-child-cute-dad-daddy-family-22194/; License: Public Domain (CC0).

    Exploring the Transition to Fatherhood: Feasibility Study Using Social Media and Machine Learning

    Abstract:

    Background: Fathers’ experiences across the transition to parenthood are underreported in the literature. Social media offers the potential to capture fathers’ experiences in real time and at scale while also removing the barriers that fathers typically face in participating in research and clinical care. Objective: This study aimed to assess the feasibility of using social media data to map the discussion topics of fathers across the fatherhood transition. Methods: Discussion threads from two Web-based parenting communities, r/Daddit and r/PreDaddit from the social media platform Reddit, were collected over a 2-week period, resulting in 1980 discussion threads contributed to by 5853 unique users. An unsupervised machine learning algorithm was then implemented to group discussion threads into topics within each community and across a combined collection of all discussion threads. Results: Results demonstrated that men use Web-based communities to share the joys and challenges of the fatherhood experience. Minimal overlap in discussions was found between the 2 communities, indicating that distinct conversations are held on each forum. A range of social support techniques was demonstrated, with conversations characterized by encouragement, humor, and experience-based advice. Conclusions: This study demonstrates that rich data on fathers’ experiences can be sourced from social media and analyzed rapidly using automated techniques, providing an additional tool for researchers exploring fatherhood.

  • Source: Pexels; Copyright: Lukas; URL: https://www.pexels.com/photo/action-activity-boy-children-296301/; License: Licensed by the authors.

    The Impact of Exercise Intensity Feedback Using Technology for Children During Active Play: Pilot Study

    Abstract:

    Background: Most children do not engage in enough exercise at the recommended intensity. Using technological devices may increase the time children spend at greater intensities while exercising. Objective: This study aimed to determine if children who are receiving instant feedback on their exercise intensity using technology would spend more time in moderate-vigorous intensity (≥70% of maximum capacity) during active play sessions. It also aimed to explore if the children’s physical characteristics were associated with the average percentage of maximal heart rate (HR) reached during sessions. Methods: Participants were asked to wear a HR monitor, attached around their chest, for 4 sessions out of the 15 sessions offered. Twenty children aged 5 to 11 years received feedback for 2 random sessions. When receiving feedback, color-coded intensity based on HR was projected onto a wall. Green corresponded to moderate intensity (≥70% of max HR) and red corresponded to a HR below moderate intensity. Age, anthropometric measures, muscle strength, body composition, physical activity level, and fitness level were measured. Results: The average percentage of maximal HR during a session was similar whether feedback was provided (70.7%, SD 6.4%) or not (71.1%, SD 4.1%) with P=.93. No personal characteristics were associated with the average intensity recorded during the exercise sessions. Conclusions: Receiving instant exercise intensity feedback is not associated with a higher proportion of time spent at moderate intensity or above in children aged 5 to 11 years when involved in an active play program. Personal characteristics are not associated with the intensity recorded when participating in an active play program.

  • Source: Pixabay; Copyright: David Evans; URL: https://pixabay.com/en/saudi-family-desert-children-1905560/; License: Public Domain (CC0).

    Telehealth Services for Children With Autism Spectrum Disorders in Rural Areas of the Kingdom of Saudi Arabia: Overview and Recommendations

    Abstract:

    Autism spectrum disorders (ASD) are the most-prevalent neurodevelopmental disorders. However, each child diagnosed with ASD presents with a unique range of behavioral and communication problems and issues with social skills. Many studies have highlighted the importance of early interventions for children with ASD to improve their skills and provide their families with the necessary support. However, in the Kingdom of Saudi Arabia (KSA), the earliest that a child with ASD in the major cities receives an intervention is at the age of 4 years, owing to limited services and a lack of awareness of the importance and benefits of early interventions. Families who live in rural areas of KSA arguably have a greater need for these services, as they have to travel to cities such as Riyadh for help. The use of telehealth services may be effective for ASD intervention among children living in rural areas, since such services use technology to provide consultations, interventions, diagnosis, training, and education. Research indicates that telehealth services are as valuable as traditional face-to-face treatment, allow families to obtain support from their homes, and help them improve their quality of life. This review will discuss the application of telehealth services to support families in rural areas of KSA who are dealing with issues of ASD, considering the cultural and religious contexts. In addition, it will examine ways in which technology can be employed to suit KSA’s culture and needs.

  • Source: iStock by Getty Images; Copyright: Rawpixel.com; URL: https://www.shutterstock.com/image-photo/breastfeeding-mother-using-smartphone-1181546218?irgwc=1&utm_medium=Affiliate&utm_campaign=Eezy%20Inc&utm_source=38919&utm_term=photopin; License: Licensed by the authors.

    Exploring Social Media Group Use Among Breastfeeding Mothers: Qualitative Analysis

    Abstract:

    Background: Breastfeeding is well known as the optimal source of nutrition for the first year of life. However, suboptimal exclusively breastfeeding rates in the United States are still prevalent. Given the extent of social media use and the accessibility of this type of peer-to-peer support, the role of social networking sites in enabling and supporting breastfeeding mothers needs to be further explored. Objective: This study aimed to leverage mothers’ attitudes and behaviors of social media usage to understand effects on breastfeeding outcomes. Methods: Participants were recruited from 1 probreastfeeding social media group with over 6300 members throughout the United States. Online focus group discussions were conducted with 21 women; interviews were conducted with 12 mothers. Qualitative data were aggregated for thematic analysis. Results: Participants indicated that the social media group formed a community of support for breastfeeding, with normalizing breastfeeding, empowerment for breastfeeding, resource for breastfeeding, and shared experiences in breastfeeding as additional themes. Conclusions: According to participants, social media groups can positively influence breastfeeding-related attitudes, knowledge, and behaviors as well as lead to longer duration of breastfeeding. The results of this study should be taken into account when designing interventions for breastfeeding mothers.

  • The POWERbreathe Plus device used by patients with cystic fibrosis. Source: Wikimedia Commons; Copyright: Entryjapan; URL: https://commons.wikimedia.org/wiki/File:Powerbreathe_Plus_Green.jpg; License: Creative Commons Attribution + ShareAlike (CC-BY-SA).

    Assessing the Perceptions of Inspiratory Muscle Training in Children With Cystic Fibrosis and Their Multidisciplinary Team: Mixed-Methods Study

    Abstract:

    Background: Little is known about the opinions or perceived benefits of an inspiratory muscle training intervention in patients with cystic fibrosis and their multidisciplinary team. Objective: The aim of this qualitative study was to examine patients' and multidisciplinary teams' views on inspiratory muscle training to inform and tailor future interventions. Methods: Individual, semistructured interviews were conducted to evaluate participants’ perspectives of a 4-week inspiratory muscle training intervention. In this study, 8 of 13 individuals involved in the inspiratory muscle training program (5 children aged 11-14 years; 2 physiotherapists; and 1 respiratory physician) participated. Interviews were transcribed verbatim, analyzed using thematic analyses, and then coded into relevant themes. Results: Four key themes emerged: acceptability, facilitators, barriers, and recommendations. While fun, enjoyment, and improved perceived physical ability were reported by children and their multidisciplinary team following the inspiratory muscle training program, the multidisciplinary team identified factors such as time and cost as key barriers. Conclusions: A short inspiratory muscle training program was perceived to have positive effects on the physical ability and psychosocial health of children with cystic fibrosis. These findings highlight the importance of obtaining participants’ and multidisciplinary teams' perceptions and recommendations to ensure the efficacy and optimal design of future inspiratory muscle training protocols.

Citing this Article

Right click to copy or hit: ctrl+c (cmd+c on mac)

Latest Submissions Open for Peer-Review:

View All Open Peer Review Articles
  • The quality of online information about periviable birth

    Date Submitted: Nov 7, 2018

    Open Peer Review Period: Nov 9, 2018 - Jan 4, 2019

    Background: Over 20,000 parents in the United States face the extraordinary challenge of participating in decisions about whether to use life support for their infant(s) born on the cusp of viability....

    Background: Over 20,000 parents in the United States face the extraordinary challenge of participating in decisions about whether to use life support for their infant(s) born on the cusp of viability. Clinicians must help these 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 desire supplemental information and frequently seek medical information on the internet. Empiric evidence about the quality of websites, however, is lacking. Objective: We sought to evaluate the quality of online information available about periviable birth and treatment options for infants born at the cusp of viability. Methods: We read a counseling script that included information typically provided by obstetrical and neonatal providers when periviable birth is imminent to twenty pregnant women. 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 GoogleTM 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 all the key components of counseling around periviable birth as outlined by professional organizations. Scores ≥6 using ECT and ≥4 using DISCERN were considered "high quality”. Inter-reviewer agreement was assessed by calculated kappa statistic. Results: A total of 97 websites were reviewed. Over half (58%) were for-profit sites, new stories or personal blogs, 28% were government or medical sites, and 13% were non-profit or advocacy sites. The majority of sites scored poorly in DISCERN questions designed to assess the reliability of information presented. For example only 27% (n=26) presented a range of treatment options for infants born during periviable period and over half (n=62) did not cite the sources that informed their website. Only 10% of 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 (n=17) indicated that there are often a number of reasonable approaches to newborn care when faced with periviable birth. Agreement was strong with ᴋ ranging from 0.72-0.91. 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.  

  • A pilot randomized control trial of a 4-week electronic mentoring employment intervention for youth with physical disabilities

    Date Submitted: Oct 30, 2018

    Open Peer Review Period: Nov 3, 2018 - Dec 29, 2018

    Background: Youth with disabilities are more likely to live in poverty and to be unemployed compared to youth without a disability. Such trends are often a result of a lack of supports, inaccessible j...

    Background: Youth with disabilities are more likely to live in poverty and to be unemployed compared to youth without a disability. Such trends are often a result of a lack of supports, inaccessible jobs, environmental barriers, and discriminatory attitudes towards people with disabilities. Youth with disabilities also face barriers in accessing vocational preparation programs. One encouraging way that could help to address challenges that youth encounter is by providing support through electronic mentoring. Objective: The objective of this study was to assess the feasibility of a 4-week online peer electronic mentoring employment intervention for youth with physical disabilities. Methods: We conducted a pilot randomized control trial (RCT) to evaluate our intervention, Empowering youth towards employment. Participants included youth aged 15-25 who were randomly assigned to an experimental (mentored) or control (non-mentored group). Our employment preparation intervention involved having trained youth mentors (i.e., near peers who also had a disability) lead online discussion forums while offering peer support and resources. The intervention involved 12 modules (3 topics a week for 4 weeks). Primary outcomes focused on implementation (i.e., feasibility and acceptability) while secondary outcomes focused on effectiveness (i.e., measures of self-determination, career maturity and social support). Results: Twenty-eight youth (mean age 19.62  3.53 (SD), 50% female) completed the RCT, in three intervention groups and two control groups (intervention n= 17, control n=9). Participants reported satisfaction with the program and that it was feasible and acceptable. Youth’s mean engagement level with the program was 6.44/10 (SD 2.33) for the experimental group and 5.56  3.53 for controls. Participants in the intervention did not demonstrate any significant improvements in social support, career maturity or self-determination compared to the control group. No adverse events were reported. Conclusions: The ‘Empowering youth towards employment’ electronic 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 youth with disabilities. Clinical Trial: Clinicaltrials.gov NCT02522507;

Advertisement