Maintenance Notice

Due to necessary scheduled maintenance, the JMIR Publications website will be unavailable from Wednesday, July 01, 2020 at 8:00 PM to 10:00 PM EST. We apologize in advance for any inconvenience this may cause you.

Who will be affected?

Advertisement

Journal Description

JMIR Pediatrics and Parenting (JPP) is an open access journal. 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. 

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


 

Recent Articles:

  • Source: Adobe Stock; Copyright: fancystudio; URL: https://stock.adobe.com/ca/search?load_type=search&native_visual_search=&similar_content_id=&is_recent_search=&search_type=usertyped&k=mother+and+infant+in+clinic&asset_id=207692279; License: Licensed by JMIR.

    Advanced Health Information Technologies to Engage Parents, Clinicians, and Community Nutritionists in Coordinating Responsive Parenting Care: Descriptive...

    Abstract:

    Background: Socioeconomically disadvantaged newborns receive care from primary care providers (PCPs) and Women, Infants, and Children (WIC) nutritionists. However, care is not coordinated between these settings, which can result in conflicting messages. Stakeholders support an integrated approach that coordinates services between settings with care tailored to patient-centered needs. Objective: This analysis describes the usability of advanced health information technologies aiming to engage parents in self-reporting parenting practices, integrate data into electronic health records to inform and facilitate documentation of provided responsive parenting (RP) care, and share data between settings to create opportunities to coordinate care between PCPs and WIC nutritionists. Methods: Parents and newborns (dyads) who were eligible for WIC care and received pediatric care in a single health system were recruited and randomized to a RP intervention or control group. For the 6-month intervention, electronic systems were created to facilitate documentation, data sharing, and coordination of provided RP care. Prior to PCP visits, parents were prompted to respond to the Early Healthy Lifestyles (EHL) self-assessment tool to capture current RP practices. Responses were integrated into the electronic health record and shared with WIC. Documentation of RP care and an 80-character, free-text comment were shared between WIC and PCPs. A care coordination opportunity existed when the dyad attended a WIC visit and these data were available from the PCP, and vice versa. Care coordination was demonstrated when WIC or PCPs interacted with data and documented RP care provided at the visit. Results: Dyads (N=131) attended 459 PCP (3.5, SD 1.0 per dyad) and 296 WIC (2.3, SD 1.0 per dyad) visits. Parents completed the EHL tool prior to 53.2% (244/459) of PCP visits (1.9, SD 1.2 per dyad), PCPs documented provided RP care at 35.3% (162/459) of visits, and data were shared with WIC following 100% (459/459) of PCP visits. A WIC visit followed a PCP visit 50.3% (231/459) of the time; thus, there were 1.8 (SD 0.8 per dyad) PCP to WIC care coordination opportunities. WIC coordinated care by documenting RP care at 66.7% (154/231) of opportunities (1.2, SD 0.9 per dyad). WIC visits were followed by a PCP visit 58.9% (116/197) of the time; thus, there were 0.9 (SD 0.8 per dyad) WIC to PCP care coordination opportunities. PCPs coordinated care by documenting RP care at 44.0% (51/116) of opportunities (0.4, SD 0.6 per dyad). Conclusions: Results support the usability of advanced health information technology strategies to collect patient-reported data and share these data between multiple providers. Although PCPs and WIC shared data, WIC nutritionists were more likely to use data and document RP care to coordinate care than PCPs. Variability in timing, sequence, and frequency of visits underscores the need for flexibility in pragmatic studies. Trial Registration: ClinicalTrials.gov NCT03482908; https://clinicaltrials.gov/ct2/show/NCT03482908

  • Source: Unsplash.com; Copyright: Solen Feyissa; URL: https://unsplash.com/photos/iurEAyYyU_c; License: Licensed by JMIR.

    Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis

    Abstract:

    Background: Loneliness, social isolation, and feeling disconnected from society are commonly experienced by parents of children with rare diseases and are, among others, important reasons for special supportive care needs. Social networking platforms are increasingly used for health communication, information exchange, and support. In the field of rare pediatric diseases, qualitative studies have shown that Facebook online support groups are utilized by and beneficial for persons affected by rare pediatric diseases. Nonetheless, the extent of this usage has not been investigated. Objective: This study aims to provide a comprehensive quantitative analysis of the extent of Facebook usage as a tool for rare pediatric disease support groups and to explore factors that influence a disease’s representation on Facebook. These results potentially offer important insights for future public health initiatives and give direction to further research that can give much needed support to parents of children with rare diseases. Methods: We determined rare pediatric diseases using the inventory of the online portal Orphanet. Facebook support groups were identified by searching 5 synonymous disease descriptions using the group category search bar. Disease- and group-describing parameters were statistically analyzed using standard descriptive statistical methods. Results: 6398 Facebook support groups, representing 826 diseases (19.5% of all searched diseases), were found. 69% are private groups. Group type, size, activity (sum of posts, comments, and reactions calculated by Facebook), new memberships, and language varied largely between groups (member count: minimum 1, maximum 23,414; activity last 30 days: minimum 0, maximum 3606). The highest percentage of awareness and information groups was found for teratogenic diseases (18/68, 26%). The odds of finding a Facebook group increased according to the level of information available about the disease: known prevalence (odds ratio [OR] 3.98, 95% CI 3.39-4.66, P<.001), known disease type (OR 3.15, 95% CI 2.70-3.68, P<.001), and known inheritance mode (OR 2.06, 95% CI 1.68-2.52, P<.001) were all associated with higher odds of finding a Facebook group, as was dominant compared to nondominant inheritance (OR 2.05, 95% CI 1.74-3.42, P<.001). The number of groups per disease increased with higher prevalence. Conclusions: Facebook is widely used as a tool for support groups for rare pediatric diseases and continues to be relevant. Two-thirds of the groups are private groups, indicating group participants’ need for privacy, which should be further explored. The advantages and limitations of Facebook as a tool for support groups in the field of rare diseases should be further investigated as it will allow health professionals to use Facebook more meaningfully in their counseling and guidance of affected individuals and their family members.

  • Source: Calm.com, Inc; Copyright: Calm.com, Inc; URL: http://pediatrics.jmir.org/2020/2/e24536/; License: Licensed by the authors.

    Parents’ Perceptions of Their Children’s Engagement in a Consumer-Based Meditation Mobile App: Cross-Sectional Survey Study

    Abstract:

    Background: In the United States, nearly half (48%) of school-aged children experience sleep disturbance that results in less than the recommended sleep duration, which may negatively impact mental health and behavior. Mindfulness interventions may improve sleep and mental health in youth. However, there are gaps in the literature regarding how children (2-12 years) and adolescents (13-17 years) practice mindfulness and the extent to which they benefit from these practices. Objective: The purpose of this study was to determine parents’ perceptions of their children’s engagement with a consumer-based mindfulness meditation app and the extent to which they believe their children have benefitted from using the app, particularly with regard to sleep. Methods: This study is a secondary analysis of a cross-sectional survey in adult subscribers (N=11,108) to the mindfulness meditation mobile app Calm. Participants who indicated that they had a child or children younger than 18 years (2944/11,108) who used the Calm app were asked additional questions related to their perceptions of their children’s engagement with Calm. Descriptive statistics were used to assess children’s app engagement, and chi-square tests and binary logistic regression models were used to assess differences in children’s usage based on gender and age. Results: Among the survey respondents, approximately half of the parents (1537/2944, 52.21%) reported that their children used Calm. Children used Calm mostly for (1) sleep (1168/1537, 75.99%), (2) stress (491/1537, 31.95%), (3) depression or anxiety (430/1537, 27.98%), and (4) improvement of overall health (215/1537,13.99%). Older children were more likely to begin using Calm to reduce stress, depression, or anxiety, whereas younger children were more likely begin using Calm to improve sleep. Most children used Calm when lying down to go to bed (1113/1529, 72.79%). Children were most likely to use sleep stories at night (1144/1207, 94.78%), followed by music and soundscapes (749/1114, 67.24%), meditations (736/1120, 65.71%), and breathing exercises (610/1092, 55.86%). Nearly all parents believed that using sleep stories was helpful for their children’s sleep (1090/1128, 96.63%), and the majority of parents felt that the other components were also helpful for their children’s sleep (music and soundscapes [570/728, 78.30%], meditations [445/696, 63.94%], and breathing exercises [610/1092, 55.86%]). Conclusions: To our knowledge, this is the first study to explore parents’ perceptions of how their children or adolescents use a popular consumer-based mindfulness mobile app (ie, Calm). As the majority of children use the app for sleep, mindfulness meditation mobile apps should consider incorporating age-appropriate sleep content to meet the needs of this audience. More research is needed to confirm the feasibility and effectiveness of mindfulness meditation apps for improving sleep and mental health in children and adolescents.

  • Source: Rawpixel; Copyright: Roungroat; URL: https://www.rawpixel.com/image/2301777/free-photo-image-doctor-kid-child-doctor; License: Licensed by JMIR.

    eHealth and mHealth Psychosocial Interventions for Youths With Chronic Illnesses: Systematic Review

    Abstract:

    Background: An estimated 12.8% of children and adolescents experience chronic health conditions that lead to poor quality of life, adjustment and coping issues, and concurrent mental health problems. Digital health deployment of psychosocial interventions to support youth with chronic illness has become increasingly popular with the advent of the technological advances in the digital age. Objective: Our objectives were to systematically review published efficacy studies of eHealth and mHealth (mobile health) psychosocial interventions for youths with chronic illnesses and review intervention theory and treatment components. Methods: PubMed, Embase, Web of Science, PsycInfo, and Cochrane Database of Systematic Reviews were searched for studies published from 2008 to 2019 of eHealth and mHealth psychosocial interventions designed for children and adolescents with chronic illnesses in which efficacy outcomes were reported. We excluded studies of interventions for caregivers, healthy youth, disease and medication management, and telehealth interventions that function solely as a platform to connect patients to providers via phone, text, or videoconference. Results: We screened 2551 articles and 133 relevant full-text articles. Sixteen efficacy studies with psychosocial and health outcomes representing 12 unique interventions met the inclusion criteria. Of the included studies, 12 were randomized controlled trials and 4 were prospective cohort studies with no comparison group. Most interventions were based in cognitive behavioral theory and designed as eHealth interventions; only 2 were designed as mHealth interventions. All but 2 interventions provided access to support staff via text, phone, email, or discussion forums. The significant heterogeneity in intervention content, intervention structure, medical diagnoses, and outcomes precluded meta-analysis. For example, measurement time points ranged from immediately postcompletion of the mHealth program to 18 months later, and we identified 39 unique outcomes of interest. The majority of included studies (11/16, 69%) reported significant changes in measured health and/or psychosocial posttreatment outcomes, with small to large effect sizes. Conclusions: Although the available literature on the efficacy of eHealth and mHealth psychosocial interventions for youth with chronic illnesses is limited, preliminary research suggests some evidence of positive treatment responses. Future studies should continue to evaluate whether digital health platforms may be a viable alternative model of delivery to traditional face-to-face approaches.

  • Parent of a child living with a disability handwriting notes about information found on the Internet. Source: Pixabay; Copyright: Hagar Lotte Geyer; URL: https://pixabay.com/fr/photos/adulte-ordinateur-portable-3052244/; License: Licensed by JMIR.

    Availability and Quality of Web Resources for Parents of Children With Disability: Content Analysis and Usability Study

    Abstract:

    Background: The internet is a valuable resource for parents of typical children, who are looking for information about their children’s growth and development and how to boost them. However, for parents of children with special needs, especially for non–English-speaking parents, there are anecdotal reports stating that specific and accurate information is not available on the internet. Objective: This study aims to describe the type of information available on the internet for French-speaking parents of children with disability as well as assess the quality of the information collected. Methods: We carried out a search of the existing relevant websites targeted at parents of children with disability. We used a validated instrument to extract structural, textual, and visual characteristics of these websites and evaluate their usability. Results: In all, 42 websites were analyzed; of these, the information had been validated by a trustworthy source in only 18 (43%) websites. Networking opportunities for parents were available in only 7 (17%) websites. Most websites provided information related to autism spectrum disorder (20/42, 42%) and learning disabilities (19/42, 45%), and only a few websites discussed other disability types such as behavorial disorders and developmental language disorders (4/42, 10% each). Community, social, and civic life (9/42, 22%); domestic life (12/42, 29%); and mobility (15/42, 36%) were the less frequently covered topics. With regard to the usability evaluation, 22 of the 42 (52%) websites received a global score <70%, whereas 20 (48%) scored ≥70% Conclusions: Although the internet is an infinite source of information, it is not necessarily actionable for parents of children with disability. Some information remains difficult to find online, and networking opportunities with other parents dealing with similar challenges are scarce.

  • Source: The Authors/Placeit; Copyright: The Authors/Placeit; URL: http://pediatrics.jmir.org/2020/2/e18174/; License: Licensed by JMIR.

    The Impact of a Smartphone App on the Quality of Pediatric Colonoscopy Preparations: Randomized Controlled Trial

    Abstract:

    Background: Smartphone apps have been successfully used to help adults prepare for colonoscopies. However, no study to date has investigated the effect of a smartphone app on pediatric colonoscopy preparation. Objective: The aim of this study is to determine if an app (SB Colonoscopy Prep) designed to educate and guide patients through their colonoscopy preparation will yield benefits over paper-based instructions and information. Methods: In total, 46 patients aged 5-18 years received either app-based or written material with instructions on how to take their prep medications as well as information about the colonoscopy procedure. Prep quality, the number of calls to the gastroenterology service, and patient arrival time were recorded. After the procedure, a questionnaire was given to each patient through which they graded their knowledge of the procedure both before and after receiving the app or written material. Results: App users had higher mean Boston scores versus control subjects receiving written instructions (7.2 vs 5.9, P=.02), indicating better colonoscopy preps. In total, 75% (15/20) of app users and 41% (9/22) of written instruction users had preps categorized as “excellent” on the Boston scale. We found no significant differences in knowledge about the procedure (app users: 10/20 [50%], written instruction users 8/22 [36%]; P=.37), phone calls to the gastroenterology clinic (n=6 vs n=2; P=.27), or arrival times at the endoscopy suite (44 min vs 46 min before the scheduled procedure time; P=.56). Conclusions: Smartphone app use was associated with an increased number of colonoscopy preps classified as “excellent” on the Boston scale. There was no significant difference between app users and the control group regarding the number of calls to the gastroenterology clinic, patient arrival time, or patient knowledge about the procedure.

  • Source: Adobe Stock; Copyright: Monkey Business; URL: https://stock.adobe.com/ca/search?load_type=search&native_visual_search=&similar_content_id=&is_recent_search=&search_type=usertyped&k=children+running&asset_id=84473072; License: Licensed by JMIR.

    Pediatric Asthma Action Plans: National Cross-Sectional Online Survey of Parents' Perceptions

    Abstract:

    Background: Asthma Action Plans (AAPs) are recommended for pediatric patients to help improve asthma control. Studies have shown variable results for unscheduled doctor and emergency room visits. AAPs may have an impact on parental self-efficacy for asthma management as well as on other daily living factors that are valuable for patients and families, such as the number of missed school days and parental workdays, and on school and caregiver management. Objective: The purpose of this study is to understand parent perceptions of AAPs. The goals of this analysis were threefold, including examining (1) the association between pediatric AAPs and parental self-efficacy, (2) parent perceptions of the helpfulness of an AAP for daily living factors, and (3) associations with the type of provider who gave the AAP (a primary care provider or an asthma specialist). Methods: A national cross-sectional online survey was completed in October 2018 by parents of children with asthma aged 0-17 years. Survey questions included the presence or absence of a pediatric AAP, the Bursch Parental Self-efficacy for Asthma scale, parental perceptions of the AAP's helpfulness with regard to daily living factors ranked on a 5-point Likert scale, and the provider type who gave the AAP. Survey responses were summarized in terms of percentages or means and standard deviations. A 2-sample t test and analysis of covariance were used to compare self-efficacy for asthma and parental-perception-of-helpfulness scores between subjects with an AAP versus subjects without an AAP. All reported P values were 2-sided. Results: A total of 704 parents with a child with asthma completed the survey. The parents had a mean age of 37.5 years (SD 10.9), and 82% (577/704) were women and 18% (127/704) were men. Most (564/704, 80%) parents had an AAP for their child; 65% (367/564) were written, 51% (286/564) were online, and 84% (474/564) were available at school. The Bursch Self-efficacy scale was significantly higher for parents with an AAP (mean 57.7, SD 8.6) versus no AAP (mean 55.1, SD 9.9; P<.001). Parents reported that they agreed/strongly agreed that an AAP was helpful for daily living factors, including managing asthma (446/544, 82%), decreased parental missed workdays (367/544, 68%), decreased child missed-school days (396/542, 73%), and for when a child is at school (422/541 78%), with other caregivers (434/543, 80%), doing normal activities (421/540 78%), and leading a normal life (437/540 81%). Parents agreed/strongly agreed that an AAP was helpful from all provider types: a pediatric provider (583/704, 82.8%), a family practice provider (556/704, 79%), and an asthma specialist (594/704, 84.4%). There was no significant difference (P=.53) between the type of provider who gave the AAP. Conclusions: Parents who had pediatric AAPs for their children reported increased parental self-efficacy compared to those who did not have AAPs. Parents found AAPs helpful for decreasing missed time from work and school, and for asthma management when at home, school, and with other caregivers. Significant AAP helpfulness was seen regardless of the provider who gave the AAP, the parent's education, and income level. Findings support the usefulness of pediatric AAPs for families and the development of easily sharable electronic AAPs for children.

  • Source: PxHere.com; Copyright: PxHere; URL: https://pxhere.com/en/photo/1063277; License: Licensed by JMIR.

    Social Media Use Among Young Adults With Connective Tissue Disorders: Cross-Sectional Pilot Study

    Abstract:

    Background: Young people with genetic conditions often face challenges coping with their health condition. It can be difficult for them to meet someone with a similar condition, which is important for reinforcement of chronic illness management recommendations. Social media is used by 97% of young people in the United States and may provide those with these disorders a space for emotional expression and support. However, there is a scarcity of literature related to the use of social media among adolescents with genetic conditions as an indicator of their perception regarding their own condition. Objective: The purpose of this pilot study was to obtain preliminary data to assess and understand social media use by young people with connective tissue disorders and determine whether they use social media to connect with patients with similar conditions or whether they would be interested in doing so. Methods: We undertook a pilot study of selected connective tissue disorders occurring in young people between the ages of 11 and 25 years, including Marfan syndrome; Ehlers-Danlos syndrome subtypes classical, classical-like, cardiac-valvular, and vascular; Beals congenital contractual arachnodactyly; and Alport hereditary nephritis. The study took place within one pediatric clinical system. Patients were identified through electronic medical record search and International Classification of Diseases, Ninth Revision, coding at a Midwest university–based clinical system. Study subjects completed a short survey describing their experiences with their connective tissue disorders, their means of self-expression, their existing network of persons to communicate with, and their use of social media. Data analysis included nominal and bivariate regressions to compare social media use in relation to age. Results: Our 31 participants (42% response rate) were 55% female (17/31) and their average age was 18 years (SD 5). All participants used social media and there were no statistically significant differences between social media use and age. The majority of participants (25/30, 83%) reported that they never used social media to discuss their condition (P=.09), and only 17% (5/30) knew someone online with a similar condition (P=.50). Most participants (19/30, 63%) said they would communicate with someone with a similar disorder (P=.64). Conclusions: We found that young individuals with connective tissue disorders use at least one type of social media. A majority did not use social media to discuss their condition or know someone online with a similar condition. However, many persons were interested in finding others similarly affected. Social media could serve as a platform for young people with connective tissue disorders to connect. Peer support is important in disease management and adolescent development. Future studies should aim at understanding social media use among young people with connective tissue disorders and helping them connect with other people who have similar conditions.

  • YouthCHAT laptop. Source: Image created by the Authors; Copyright: The Authors; URL: http://pediatrics.jmir.org/2020/2/e20976/; License: Creative Commons Attribution (CC-BY).

    Repeated Psychosocial Screening of High School Students Using YouthCHAT: Cohort Study

    Abstract:

    Background: Psychosocial problems are common during adolescence and can have long-lasting effects on health and on academic and social functioning. YouthCHAT, an electronic HEEADSSS (home, education, eating, activities, drugs and alcohol, suicide and depression, sexuality and safety)-aligned instrument, has recently been demonstrated to be an acceptable and effective school-based psychosocial screener for 13-year-old (Year 9) high school students. Objective: This study aims to compare acceptability and detection rates with repeated YouthCHAT screenings of high school students when they are 13 years old (Year 9) and 14 years old (Year 10). Methods: We invited all Year-10 students to complete a YouthCHAT screening in 2018. Rates of positively identified issues were compared between the subset of students screened in both 2017 and 2018. Student acceptability toward YouthCHAT was investigated through focus group sessions. Onward clinical referral rates in 2018 were also investigated to explore the potential referral burden following screening. Data analysis for rates of positively identified issues were conducted with the McNemar test. Chi-square, Fisher exact test, and Kruskal-Wallis test were used to analyze the focus group data. Results: Of 141 eligible Year-10 students, 114 (81%) completed a YouthCHAT screening during 2018, and 97 (85%) of them completed it for a second time. Apart from depression, which increased (P=.002), and perceived life stress, which decreased (P=.04), rates of identified issues were broadly similar between 13 and 14 years of age. Repeated screenings via YouthCHAT was acceptable to students and time-efficient (mean, 6 minutes and 32 seconds) but did not reduce the overall number of individuals with identified issues. Onward clinical referrals from positive screens were mostly managed by school-based health services without the need for external referrals. Conclusions: Although further evaluation is needed, our results support the value of YouthCHAT as an acceptable and effective instrument with which to achieve routine identification of psychosocial issues and early intervention within a high school environment.

  • Source: Freepik; Copyright: Freepik; URL: https://www.freepik.com/free-photo/full-shot-mother-girls-floor_7966502.htm; License: Licensed by JMIR.

    Psychosocial Challenges and Opportunities for Youth With Chronic Health Conditions During the COVID-19 Pandemic

    Abstract:

    School closures, altered access to health services, and economic stress during the COVID-19 pandemic have likely had an impact on the mental and physical well-being of youth worldwide, particularly among those with chronic health conditions (CHCs). A number of challenges and opportunities have emerged during the COVID-19 pandemic for youth with CHCs. Challenges include heightened anxiety, disrupted routines, academic and social stresses associated with school closure, increased risk of domestic violence and abuse, and reduced access to physical and psychosocial support. On the other hand, opportunities include reduced academic and social stress, increased time with families, reduced access to substances, easier access to health care using technology, and opportunities to build resilience. This viewpoint paper highlights both challenges and opportunities for youth with CHCs during the pandemic and offers recommendations for further research and clinical care.

  • Source: Burst; Copyright: Tomáš Hustoles; URL: https://burst.shopify.com/photos/a-woman-plays-on-her-phone?q=using+smartphone; License: Licensed by JMIR.

    Patient and Clinician Perspectives on Adolescent Opioid Use Disorder Treatment During a Pandemic: One Step Back, but Two Forward?

    Abstract:

    Opioid use disorder (OUD) is one of the most pressing public health problems in the United States and is highly prevalent among adolescents and young adults (AYAs). However, only a small percentage of AYAs with OUD ever receive treatment. Further, among those that do receive treatment, a substantial proportion of patients continue to struggle with OUD, and many prematurely drop out of treatment. These challenges have only been heightened in the face of the COVID-19 pandemic, but greater utilization of telehealth and mobile technologies by OUD patients may help counter these barriers, which ultimately may improve AYA OUD treatment in the postpandemic period. This viewpoint presents the perspective of a person in OUD recovery using online and mobile technology to support his own OUD recovery combined with thoughts from two clinicians supporting AYAs with OUD. Their perspectives may provide insights to help counter COVID-19–related consequences and offer clues to improving AYA OUD treatment in the long term.

  • Young family with parents reading online material. Source: iStock by Getty Images; Copyright: fizkes; URL: https://www.istockphoto.com/photo/little-siblings-lying-on-floor-painting-at-home-gm1201510261-344601516; License: Licensed by the authors.

    Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design

    Abstract:

    Background: The internet provides an ideal avenue to share information, advice, and support regarding autism. However, many websites lack quality control and rarely provide a one-stop resource for families to access necessary, evidence-based information. Objective: This study aims to use participatory action research (PAR) with end users (ie, parents) and clinicians to develop a web-based resource (Pathways Beyond Diagnosis) to improve timely access to quality, evidence-based information, and support for families after their child is diagnosed with autism. Methods: The PAR approach involves 4 phases: (1) cooperative researcher-stakeholder planning, (2) cooperative researcher-stakeholder–based action, (3) stakeholder observation, and (4) cooperative researcher-stakeholder reflection. A total of 15 participants (parents, n=3; clinicians, n=9; and researchers, n=3) attended individual or group participatory design workshops. This was followed by the translation of knowledge and ideas generated during the workshops to produce mockups of webpages and content, rapid prototyping, and one-on-one consultations with end users to assess the usability of the website developed. Results: A total of 3 participatory design workshops were held with the participants, each followed by a knowledge translation session. At the end of the PAR cycle, an alpha prototype of the website was built and a series of one-on-one end user consultation sessions were conducted. The PAR cycle revealed the importance of 6 key topic areas (understanding autism, accessing services, support, gaining funding, putting it all together, and looking into the future) associated with the time of diagnosis, which were incorporated into the beta version of the website. Conclusions: The development of the Pathways Beyond Diagnosis website using PAR ensures that families have ready access to practical and evidence-based information following a young child’s diagnosis. The website guides families to access relevant, reputable, and evidence-based information in addition to summarizing key challenges encountered after diagnosis (ie, grief, sharing the diagnosis) and the importance of self-care.

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 Sign 4 Big Feelings intervention to improve early years outcomes in preschool children: Outcome evaluation

    Date Submitted: Nov 12, 2020

    Open Peer Review Period: Oct 16, 2020 - Dec 11, 2020

    Background: Any delays in language development may affect learning, profoundly influencing personal, social, and professional trajectories. The effectiveness of the Sign 4 Big Feelings (S4BF) interven...

    Background: Any delays in language development may affect learning, profoundly influencing personal, social, and professional trajectories. The effectiveness of the Sign 4 Big Feelings (S4BF) intervention was investigated by measuring change in early years outcomes after a three month period. Objective: To determine whether Early Years Outcomes (EYOs) significantly improve (beyond typical expected development), if children’s wellbeing improves after the S4BF intervention period, and if there are differences between boys and girls in any progress made. Methods: An evaluation of S4BF was conducted with 111 preschool age children in early years settings in Luton, United Kingdom. Listening, speaking, understanding, and managing feelings and behaviour, in addition to Leuven well-being scales were used in a quasi-experimental study design to measure outcomes pre- and postintervention. Results: Statistically and clinically significant differences were found for each of the seven pre- and post measures taken: words understood and spoken, well-being scores, and the four EYO domains. Gender differences were negligible in all analyses undertaken. Conclusions: Children of all abilities may benefit considerably from S4BF, but a language-based intervention of this nature may be transformational for children who are behind developmentally, with EAL needs or of lower socio-economic status. Clinical Trial: ISRCTN42025531; https://doi.org/10.1186/ISRCTN42025531

Advertisement