TY - JOUR AU - Meyer, Eric AU - Sauzéon, Hélène AU - Saint-Supery, Isabeau AU - Mazon, Cecile PY - 2025/4/17 TI - Evaluating a Web-Based Application to Facilitate Family-School-Health Care Collaboration for Children With Neurodevelopmental Disorders in Inclusive Settings: Protocol for a Nonrandomized Trial JO - JMIR Res Protoc SP - e63378 VL - 14 KW - neurodevelopmental disorders KW - coeducation KW - whole-school approach KW - family-professional partnership KW - web application KW - inclusive education KW - family-school-health care N2 - Background: An individual education plan (IEP) is a key element in the support of the schooling of children with special educational needs or disabilities. The IEP process requires effective communication and strong partnership between families, school staff, and health care practitioners. However, these stakeholders often report their collaboration as limited and difficult to maintain, leading to difficulties in implementing and monitoring the child?s IEP. Objective: This paper aims to describe the study protocol used to evaluate a technological tool (CoEd application) aiming at fostering communication and collaboration between family, school, and health care in the context of inclusive education. Methods: This protocol describes a longitudinal, nonrandomized controlled trial, with baseline, 3 month, and 6-month follow-up assessments. The intervention consisted of using the web-based CoEd application for 3 months to 6 months. This application is composed of a child?s file in which stakeholders of the support team can share information about the child?s profile, skills, aids and adaptations, and daily events. The control group is asked to function as usual to support the child in inclusive settings. To be eligible, a support team must be composed of at least two stakeholders, including at least one of the parents. Additionally, the pupil had to be aged between 10 years and 16 years, enrolled in secondary school, be taught in mainstream settings, and have an established or ongoing diagnosis of autism spectrum disorder, attention-deficit/hyperactivity disorder, or intellectual disability (IQ<70). Primary outcome measures cover stakeholders? relationships, self-efficacy, and attitudes toward inclusive education, while secondary outcome measures are related to stakeholders? burden and quality of life, as well as children?s school well-being and quality of life. We plan to analyze data using ANCOVA to investigate pre-post and group effects, with a technological skills questionnaire as the covariate. Results: After screening for eligibility, 157 participants were recruited in 37 support teams, composed of at least one parent and one professional (school, health care). In September 2023, after the baseline assessment, the remaining 127 participants were allocated to the CoEd intervention (13 teams; n=82) or control condition (11 teams; n=45). Conclusions: We expect that the CoEd application will improve the quality of interpersonal relationships in children?s IEP teams (research question [RQ]1), will show benefits for the child (RQ2), and improve the well-being of the child and the stakeholders (RQ3). Thanks to the participatory design, we also expect that the CoEd application will elicit a good user experience (RQ4). The results from this study could have several implications for educational technology research, as it is the first to investigate the impacts of a technological tool on co-educational processes. International Registered Report Identifier (IRRID): DERR1-10.2196/63378 UR - https://www.researchprotocols.org/2025/1/e63378 UR - http://dx.doi.org/10.2196/63378 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63378 ER - TY - JOUR AU - Grossard, Charline AU - Descamps, Mélanie AU - Cadoni, Sara AU - Pellerin, Hugues AU - Vonthron, François AU - Xavier, Jean AU - Falissard, Bruno AU - Cohen, David PY - 2025/4/3 TI - Assessing the Noninferiority of a Rhythm and Language Training Serious Game Combined With Speech Therapy Versus Speech Therapy Care for Children With Dyslexia: Protocol for an Investigator-Blinded Randomized Controlled Trial JO - JMIR Res Protoc SP - e71326 VL - 14 KW - dyslexia KW - serious game KW - rhythm KW - randomized controlled trial KW - non-inferiority protocol N2 - Background: Specific learning disorder (SLD) of reading skills impacts approximately 7% of children. Speech and reading therapy is currently the gold-standard intervention for improving children?s reading abilities. However, intensive interventions are difficult to implement. Recently, numerous studies have investigated the interest of game- and home-based training approaches to enhance children?s motivation and facilitate intensive learning activities in home settings. The serious game Poppins Clinical integrates rhythm and specific written language exercises to improve reading skills in children with SLD. Objective: This study aimed to assess the noninferiority of Poppins Clinical combined with a reading specialist session once every 2 weeks versus a reading specialist session every week, on the reading skills of children with SLD. Methods: A total of 306 children with dyslexia will be recruited for this study and randomly assigned to either the experimental or control group. Children in the experimental group will use the serious game Poppins Clinical at home for 20 minutes, 5 days a week, and attend 1 reading therapy session every 2 weeks. The control group will participate in one reading therapy session per week. Poppins Clinical combines rhythm and language exercises integrated into an engaging game designed to maintain user motivation. We will use a noninferiority paradigm to assess the clinical impact of both interventions in terms of reading accuracy, reading speed, and reading comprehension. We will also investigate the evolution of phonological and visual-attentional skills. However, we will explore the impact of the protocol on parental stress and children?s perception of their difficulties. Finally, we will also assess the cost of medical care and the impact of introducing the serious game Poppins Clinical on reading therapy. To facilitate recruitment and ensure the representativeness of our sample, the evaluation of the children will be conducted via videoconference using standardized tests that have been adapted for videoconference administration. Results: Patient recruitment is expected to start in December 2024, with study completion by the end of August 2025. Conclusions: This study should allow us to assess the interest in using the serious game Poppins Clinical in addition to reading therapy to improve reading abilities in children with SLD. Trial Registration: ClinicalTrials.gov NCT06592911; https://clinicaltrials.gov/study/NCT06592911 International Registered Report Identifier (IRRID): DERR1-10.2196/71326 UR - https://www.researchprotocols.org/2025/1/e71326 UR - http://dx.doi.org/10.2196/71326 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/71326 ER - TY - JOUR AU - Lu, Hsin-Hui AU - Liang, Shih-Yuan AU - Huang, Yi-Chia PY - 2025/2/11 TI - Efficacy, Feasibility, and Acceptability of an Emotional Competence Tele-Intervention for Mandarin-Speaking Children Aged 5 to 7 Years With Developmental Language Disorder: Pilot Study With an Interrupted Time-Series Design JO - JMIR Pediatr Parent SP - e60333 VL - 8 KW - language disorder KW - pediatrics KW - evidence-based intervention KW - telemedicine KW - tele-practice KW - visual support KW - mobile phone N2 - Background: Children with developmental language disorder (DLD) often experience language difficulties that hinder their ability to acquire emotional competence. Poor emotional competence is associated with emotional and behavioral problems in young children. Objective: This research involved two studies focusing on (1) the emotional competence of Mandarin-speaking children aged 5 to 7 years with DLD and (2) the efficacy, feasibility, and acceptability of a tele-intervention designed to enhance their emotional competence in Taiwan. Methods: Five children with DLD from study 1 declined to participate in study 2, the emotional competence tele-intervention, and were excluded from the analysis. We compared the emotional competence of 20 Mandarin-speaking children with DLD to that of 24 children with typical language development (TLD). The children with DLD were, on average, aged 5.79 (SD 0.47) years, whereas the children with TLD were, on average, aged 5.93 (SD 0.31) years. We assessed the children?s emotional competence, nonverbal ability, verbal comprehension, vocabulary acquisition, and expressive language skills. In study 2, all children with DLD included in study 1 engaged in an emotional competence tele-intervention. An interrupted time-series design was used to examine their emotional competence. In total, 20 children with DLD provided data on emotional competence evaluated using the Emotional Lexicon Test. These data were individually collected at 3 time points after study 1 (time 1). These phases included baseline (time 1 to time 2), during the tele-intervention (time 2 to time 3), and follow-up (time 3 to time 4), spanning approximately 18 to 20 weeks from time 1 to time 4. Recruitment, retention, and attendance rates were calculated to evaluate the intervention?s feasibility, and participant mood was evaluated after each session to calculate the intervention?s acceptability. Results: No significant changes in the children?s ability to understand basic or complex emotional terms were observed during the baseline period. However, changes were observed during the tele-intervention period, and these changes remained throughout the follow-up period. With a recruitment rate of 80% (20/25), all participants completed 4 intervention sessions, with retention and attendance rates exceeding 95% (19/20). A total of 90% (18/20) of the participants deemed each session to be acceptable. Conclusions: Mandarin-speaking children aged 5 to 7 years with DLD exhibited lower emotional competence compared with their counterparts with TLD. Tele-interventions are effective in enhancing the emotional competence of children with DLD, demonstrating feasibility and acceptability for these children and their parents in Taiwan. UR - https://pediatrics.jmir.org/2025/1/e60333 UR - http://dx.doi.org/10.2196/60333 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/60333 ER - TY - JOUR AU - Mirzaei, Venus AU - Wolstencroft, Jeanne AU - Lockwood Estrin, Georgia AU - Buckley, Eleanor AU - Sayani, Shermina AU - Katakis, Panos AU - Anand, Reena AU - Squire, Tessa AU - Short, Eleanor AU - Frankson, Paige AU - Skuse, David AU - Heys, Michelle PY - 2025/2/11 TI - Novel Procedures for Evaluating Autism Online in a Culturally Diverse Population of Children: Protocol for a Mixed Methods Pathway Development Study JO - JMIR Res Protoc SP - e55741 VL - 14 KW - autism KW - child KW - telehealth KW - co-development KW - feasibility KW - acceptability KW - assessment KW - diagnosis KW - online KW - evaluation KW - diagnostic KW - intervention KW - pilot implementation evaluation study N2 - Background: Current autism assessment procedures are costly and resource-intensive. The COVID-19 pandemic accelerated the adoption of telemedicine, highlighting the benefits of innovative diagnostic tools. Telemedicine-based pathways could enhance accessibility and equity in autism diagnostics. Objective: The Children with Autism Technology Enabled Assessment (CHATA) project aims to develop and pilot an open-source autism diagnostic pathway for children up to 5 years old, delivered through telemedicine. The pathway is designed to be culturally and linguistically adaptable, increasing its applicability to diverse populations and integrating with existing National Health Service digital systems. Methods: Initial pathway development was informed by systematic evidence reviews, coproduction, and mixed methods usability. CHATA comprises 2 key elements: online self-completed standardized autism questionnaires and a structured online interview and observation by a trained clinician. Out of 60 families near the top of the local waiting list will be invited to participate in the pilot evaluation, assessed using both the CHATA and usual assessment pathways. Sensitivity and specificity will be calculated by comparing the diagnosis of autism through CHATA with usual care. Quantitative usability assessment will be gathered from all families using the System Usability Scale (where a mean above 68 indicates above-average usability). A subset of CHATA assessments will be reviewed for interrater reliability (measured by the Cohen ? for categorical data [diagnosis present or absent], with values indicating the level of agreement; eg, <0 indicating no agreement, 0.61-0.80 indicating substantial agreement). Qualitative data on acceptability, feasibility, and usability will be gathered from semistructured interviews with a subset of families and health care providers. We will recruit 60 families for the main pilot study (including the usability testing) and 10-15 participants for the qualitative substudy. Data will estimate CHATA?s diagnostic accuracy, validity, reliability, usability, and acceptability. Patient and public involvement will be integral throughout. The study will take place in a socio-economically deprived, ethnically diverse inner-London Borough within a community-based child health National health service responsible for the Autism assessment of children and young people up to the age of 13 years. Results: Ethics approval was received in June 2023 (Research Ethics Committee reference 22/LO/0751; IRAS project ID 320499). Data collection commenced in April 2023 and completed in October 2024. Project end date is March 2025. As of November 2024, we had enrolled 57 participants to the pilot study and 12 to the qualitative substudy. Conclusions: The CHATA project aims to establish a novel, culturally sensitive, equitable, and accurate online autism assessment pathway. By addressing geographical and linguistic barriers, this pathway seeks to reduce service costs, shorten waiting times, and promote equity in autism diagnosis. The procedures developed are expected to be generalized to other populations nationwide. International Registered Report Identifier (IRRID): DERR1-10.2196/55741 UR - https://www.researchprotocols.org/2025/1/e55741 UR - http://dx.doi.org/10.2196/55741 UR - http://www.ncbi.nlm.nih.gov/pubmed/39932780 ID - info:doi/10.2196/55741 ER - TY - JOUR AU - Nakamura, Kanako AU - Hamada, Yuko AU - Fujita, Ayaka AU - Morokuma, Seiichi PY - 2024/12/18 TI - Factors That Affect the Quality of Life of Mothers Caring for Children With Medical Needs at Home: Cross-Sectional Questionnaire Study JO - Asian Pac Isl Nurs J SP - e63946 VL - 8 KW - home care KW - children with special health care needs KW - children with medical complexity KW - mother KW - quality of life KW - caregiver KW - questionnaire N2 - Background: The number of children requiring daily medical care is on the rise, with many being cared for at home. This situation places a significant burden on mothers, who often serve as the primary caregivers. Objective: This study aimed to clarify the factors that affect the quality of life of mothers with children who require home health care. Methods: A questionnaire study was conducted among mothers of children needing medical care at home, with 46 participants responding. The questionnaire included items regarding the child?s condition, the mother?s situation, and the World Health Organization Quality of Life-26scale. Results: Factors influencing the quality of life of mothers included whether the child attended daycare or school (?=.274; P=.04), the duration of home care (?=.305; P=.02), and the presence or absence of position changes (?=?.410; P=.003). The presence or absence of position changes had the most significant impact (adjusted R2=.327). Conclusions: The most significant factor affecting the quality of life of mothers of children requiring home medical care is the presence or absence of positional changes. UR - https://apinj.jmir.org/2024/1/e63946 UR - http://dx.doi.org/10.2196/63946 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63946 ER - TY - JOUR AU - Kohn, Charmaine AU - Turner, Lauren AU - Yang, Zhixing AU - Absoud, Michael AU - Casbard, Angela AU - Gomes, Manuel AU - Grant, Gemma AU - Hassiotis, Angela AU - Kennedy, Eilis AU - Levitt, Sophie AU - McNamara, Rachel AU - Randell, Elizabeth AU - Totsika, Vasiliki PY - 2024/12/5 TI - Remotely Delivered Video Interaction Guidance for Families of Children With an Intellectual Disability Referred to Specialist Mental Health Services: Protocol for a Feasibility Randomized Controlled Trial JO - JMIR Res Protoc SP - e54619 VL - 13 KW - learning disability KW - intellectual disability KW - ID KW - child mental health KW - challenging behavior KW - family therapy KW - parent-child relations KW - parenting N2 - Background: Children with an intellectual disability (ID) are 3-4 times more likely to present with behaviors that challenge and mental health problems than typically developing children. Parenting and the quality of parent-child relationships are risk factors for these families. The COVID-19 pandemic further exacerbated difficulties, leading to an increase in child mental health problems and behaviors that challenge, a deterioration in parental mental health, and further strain on family relationships. Remote family interventions could be an effective solution for both families and specialist mental health services. Video interaction guidance (VIG) has shown promise for improving child mental health. However, it is unclear whether it is widely acceptable to families and feasible to implement across specialist child mental health services. Objective: This randomized controlled trial aims to evaluate the feasibility of delivering VIG as a remote intervention for parents of children aged 6-12 years with ID who have been referred to specialist mental health services. Methods: The study will be undertaken across 5-7 National Health Service specialist mental health services in England, involving 50 participants randomly allocated on a 1:1 basis to either the intervention group (receiving remote VIG) or the treatment-as-usual (TAU) group. The intervention group will engage in 3-5 cycles of VIG delivered remotely over 12 weeks. The primary feasibility outcomes include the recruitment rate, retention at 6-month follow-up, and VIG cycle completion rate. The secondary outcomes will assess the acceptability of VIG and the feasibility of remote implementation, including fidelity to the intervention protocol. Data will be gathered through online surveys and telephone interviews at baseline, 3 months, and 6 months. Feasibility outcomes will be summarized using descriptive statistics, while thematic analysis will be applied to qualitative data from semistructured interviews with participants, VIG practitioners, and service managers. An embedded process evaluation will explore barriers and facilitators to engagement with VIG, and a parallel health economics evaluation will assess the feasibility of capturing service use data and intervention costs. Results: The trial was open to recruitment between December 2022 and March 2024. The first results should be available in 2025. Conclusions: The study is the first randomized evaluation of VIG as offered to parents of children with ID who have been referred to specialist mental health settings. The outcomes from this feasibility trial will inform the decision to proceed with a definitive trial, using a traffic light system to evaluate recruitment, retention, and VIG completion rates alongside qualitative insights and economic evaluations. Trial Registration: ISRCTN Registry ISRCTN13171328; http://www.isrctn.com/ISRCTN13171328 International Registered Report Identifier (IRRID): DERR1-10.2196/54619 UR - https://www.researchprotocols.org/2024/1/e54619 UR - http://dx.doi.org/10.2196/54619 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/54619 ER - TY - JOUR AU - Wisniewski, Payson AU - Depuy, Julia AU - Kim, Cassandra AU - Garrison, Olivia AU - Jerome, J. Gerald PY - 2024/10/7 TI - Supporting Weight Loss Among Parents of Children With a Disability: Lessons Learned From a Single-Arm Pilot Study JO - JMIR Form Res SP - e63858 VL - 8 KW - weight loss KW - obesity KW - disability KW - parent KW - family KW - child KW - weight loss intervention UR - https://formative.jmir.org/2024/1/e63858 UR - http://dx.doi.org/10.2196/63858 UR - http://www.ncbi.nlm.nih.gov/pubmed/39374058 ID - info:doi/10.2196/63858 ER - TY - JOUR AU - Marelli, Ariane AU - Rozenblum, Ronen AU - Bolster-Foucault, Clara AU - Via-Dufresne Ley, Alicia AU - Maynard, Noemie AU - Amaria, Khush AU - Galuppi, Barb AU - Strohm, Sonya AU - Nguyen, Linda AU - Dawe-McCord, Claire AU - Putterman, Connie AU - Kovacs, H. Adrienne AU - Gorter, Willem Jan PY - 2024/10/1 TI - Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach JO - JMIR Pediatr Parent SP - e51606 VL - 7 KW - patient-centered care KW - patient engagement KW - mobile app KW - health IT KW - health care transition KW - mobile phone N2 - Background: Transition from pediatric to adult health care varies and is resource intensive. Patient-centered health information technology (HIT) interventions are increasingly being developed in partnership with patients. Objective: This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness. Methods: The app was designed for patients aged 15 to 17 years with brain-based disabilities having the ability to use a mobile app. A multidisciplinary team, an industry partner, and a patient and family advisory council was assembled. We hypothesized that existing tools could be migrated into the app to address education, empowerment, and navigation. We used cognitive learning theory to support chapters targeting transition in care skill sets. We used the agile iterative methodology to engage stakeholders. Results: We developed a novel MyREADY Transition HIT platform. An electronic mentor supported cognitive learning with messaging, quizzes, rewards, and videos. We used gaming to guide navigation through a fictitious health care city. Adapting existing tools was achieved by the patient and family advisory council requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 months instead of our grant-approved 12 months, impacting the onset of the planned trial within the allotted budget. Conclusions: A novel patient-centered HIT platform to improve health care transition was successfully developed in partnership with patients and industry. Careful resource management was needed to achieve timely delivery of the end product, flagging the cautious planning required to deliver HIT tools in time for the much-needed trials informing their clinical application. Trial Registration: ClinicalTrials.gov NCT03852550; https://clinicaltrials.gov/study/NCT03852550 UR - https://pediatrics.jmir.org/2024/1/e51606 UR - http://dx.doi.org/10.2196/51606 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/51606 ER - TY - JOUR AU - Hillyar, Timothy Christopher Robert AU - Bishop, Natalie AU - Nibber, Anjan AU - Bell-Davies, Jean Frances AU - Ong, Juling PY - 2024/9/18 TI - Assessing the Evidence for Nonobstetric Risk Factors for Deformational Plagiocephaly: Systematic Review and Meta-Analysis JO - Interact J Med Res SP - e55695 VL - 13 KW - deformational plagiocephaly KW - plagiocephaly KW - flat head syndrome KW - back to sleep KW - meta-analysis KW - systematic review KW - meta-analyses KW - systematic reviews KW - vitamin D KW - vit D KW - head position preference KW - head position KW - head positioning KW - bottle feeding KW - tummy time KW - sleeping position KW - motor milestones KW - obesity KW - maternal education level KW - male sex KW - formula feeding KW - macrocephaly KW - head circumference KW - mechanical ventilation KW - pediatric KW - pediatrics KW - paediatric KW - paediatrics KW - infant KW - infants KW - infancy KW - baby KW - babies KW - neonate KW - neonates KW - neonatal KW - toddler KW - toddlers KW - child KW - children N2 - Background: Plagiocephaly is defined as an asymmetrical distortion of the skull, resulting in an oblique trapezoid or parallelogram head shape. Deformational plagiocephaly (DP) is caused by forces acting on one side of the back of the head, distorting normal skull symmetry. Objective: The aims of this systematic review and meta-analysis were to critically assess the evidence for nonobstetric risk factors for DP and to make evidence-based recommendations for reducing the prevalence of DP. Methods: The selection criterion was studies reporting risk factors for DP. Case reviews, case series, expert opinions, and systematic reviews were excluded. PubMed and Web of Science were searched from August 21, 2010, to August 21, 2022. Publication bias was assessed using funnel plots. Meta-analyses were presented using forest plots. Results: A total of 19 studies (cohort studies: n=13, 68%; case-control studies: n=5, 26%; and cross-sectional studies: n=1, 5%) with a total of 14,808 participants were included. Of the 43 investigated potential nonobstetric factors, 16 (37%) were associated with DP. Of these 16 factors, 12 (75%) had odds ratios (ORs) with 95% CIs not crossing 1: insufficient vitamin D intake (OR 7.15, 95% CI 3.77-13.54), head position preference (OR 4.75, 95% CI 3.36-6.73), bottle-only feeding (OR 4.65, 95% CI 2.70-8.00), reduced tummy time (OR 3.51, 95% CI 1.71-7.21), sleeping position (OR 3.12, 95% CI 2.21-4.39), fewer motor milestones reached by the age of 6 months (OR 2.56, 95% CI 1.66-3.96), obesity (OR 2.45, 95% CI 1.02-5.90), maternal education level (OR 1.66, 95% CI 1.17-2.37), male sex (OR 1.51, 95% CI 1.07-2.12), formula feeding (OR 1.51, 95% CI 1.00-2.27), head circumference (OR 1.22, 95% CI 1.06-1.40), and mechanical ventilation (OR 1.10, 95% CI 1.00-1.14). No evidence of publication bias was detected. Conclusions: This study provides a comprehensive assessment of the nonobstetric factors associated with DP and presents 11 evidence-based recommendations for reducing its prevalence. The primary limitation is that only publication bias was assessed. Trial Registration: PROSPERO CRD42020204979; https://www.crd.york.ac.uk/prospero/display_record.php? ID=CRD42020204979 UR - https://www.i-jmr.org/2024/1/e55695 UR - http://dx.doi.org/10.2196/55695 UR - http://www.ncbi.nlm.nih.gov/pubmed/39292504 ID - info:doi/10.2196/55695 ER - TY - JOUR AU - Mahmoudi, Ebrahim AU - Yejong Yoo, Paul AU - Chandra, Ananya AU - Cardoso, Roberta AU - Denner Dos Santos, Carlos AU - Majnemer, Annette AU - Shikako, Keiko PY - 2024/9/6 TI - Gamification in Mobile Apps for Children With Disabilities: Scoping Review JO - JMIR Serious Games SP - e49029 VL - 12 KW - mobile health KW - mHealth KW - gamification KW - children with disabilities KW - mobile phone N2 - Background: Children with disabilities face numerous challenges in accessing health services. Mobile health is an emerging field that could significantly reduce health inequities by providing more accessible services. Many mobile apps incorporate gamification elements such as feedback, points, and stories to increase engagement and motivation; however, little is known about how gamification has been incorporated in mobile apps for children with disabilities. Objective: This scoping review aims to identify and synthesize the existing research evidence on the use of gamification in mobile apps for children with disabilities. Specifically, the objectives were to (1) identify the categories of these mobile apps (eg, treatment and educational) (2), describe the health-related outcomes they target, (3) assess the types and levels of gamification elements used within these apps, and (4) determine the reasons for incorporating gamification elements into mobile apps. Methods: We searched MEDLINE, PsycINFO, CINAHL, Embase, the ACM Digital Library, and IEEE Xplore databases to identify papers published between 2008 and 2023. Original empirical research studies reporting on gamified mobile apps for children with disabilities that implemented at least 1 gamification strategy or tactic were included. Studies investigating serious games or full-fledged games were excluded. Results: A total of 38 studies reporting on 32 unique gamified mobile apps were included. Findings showed that gamified apps focus on communication skills and oral health in children with autism spectrum disorder while also addressing self-management and academic skills for other disability groups. Gamified mobile apps have demonstrated potential benefits across different populations and conditions; however, there were mixed results regarding their impact. The gamification strategies included fun and playfulness (23/32, 72%), feedback on performance (17/32, 53%), and reinforcement (17/32, 53%) in more than half of apps, whereas social connectivity was used as a gamification strategy in only 4 (12%) mobile apps. There were 2 main reasons for integrating gamification elements into mobile apps described in 16 (42%) studies: increasing user engagement and motivation and enhancing intervention effects. Conclusions: This scoping review offers researchers a comprehensive review of the gamification elements currently used in mobile apps for the purposes of treatment, education, symptom management, and assessment for children with disabilities. In addition, it indicates that studies on certain disability groups and examinations of health-related outcomes have been neglected, highlighting the need for further investigations in these areas. Furthermore, research is needed to investigate the effectiveness of mobile-based gamification elements on health and health behavior outcomes, as well as the healthy development of children with disabilities. UR - https://games.jmir.org/2024/1/e49029 UR - http://dx.doi.org/10.2196/49029 UR - http://www.ncbi.nlm.nih.gov/pubmed/39240675 ID - info:doi/10.2196/49029 ER - TY - JOUR AU - Xie, Yijun AU - Wu, Jing AU - Li, Yao AU - Liu, Hui AU - Peng, Yanyan AU - Zhou, Ping AU - Sun, Yizhou AU - Kang, Luyan AU - Jiang, Chenghua AU - Wu, Hengjing PY - 2024/8/7 TI - Requirements for and Barriers to Rehabilitation Services for Children With Disabilities in Middle- and High-Income Countries: Scoping Review JO - Interact J Med Res SP - e50047 VL - 13 KW - children with disabilities KW - barriers KW - health services KW - middle- and high-income countries KW - child KW - low income KW - middle income KW - disability KW - children KW - disabilities KW - income KW - barrier KW - rehabilitation KW - suitability KW - availability KW - affordability KW - support system KW - support KW - awareness KW - policy N2 - Background: The rehabilitation of children with disabilities has received considerable attention from the United Nations. However, the state of rehabilitation services for children with disabilities worldwide remains far from optimistic, even in economically affluent middle- and high-income countries. Objective: This scoping review aimed to identify the rehabilitation needs of children with disabilities and their barriers to rehabilitation services in middle- and high-income countries. Methods: A systematic search was conducted using MEDLINE and Web of Science for papers published from January 2013 to December 2023. Studies were included if they were peer-reviewed, full-text articles related to children with disabilities, reporting on their access to rehabilitation services, and conducted in countries classified by the World Bank 2023 as middle- and high-income economies. Exclusion criteria included duplicates, unavailable full texts, and studies without distinct outcomes. A total of 27 studies were selected following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, focusing on children, their families, or service providers. Results: The suitability, availability, and affordability of rehabilitation services were identified as the major needs and barriers for children with disabilities in middle- and high-income countries. This included communication barriers, a need for more personnel and facilities, and the stagnation and inadequacy of economic subsidies. Conclusions: Middle- and high-income countries have relatively well-established rehabilitation infrastructure and support systems. They are nevertheless insufficient for meeting the needs of children with disabilities. More attention should be paid to these issues to improve the well-being of children with disabilities. The data provided by this review can help raise awareness of rehabilitation needs and barriers at the policy level. UR - https://www.i-jmr.org/2024/1/e50047 UR - http://dx.doi.org/10.2196/50047 UR - http://www.ncbi.nlm.nih.gov/pubmed/39110502 ID - info:doi/10.2196/50047 ER - TY - JOUR AU - Singla, Ashwani AU - Khanna, Ritvik AU - Kaur, Manpreet AU - Kelm, Karen AU - Zaiane, Osmar AU - Rosenfelt, Scott Cory AU - Bui, An Truong AU - Rezaei, Navid AU - Nicholas, David AU - Reformat, Z. Marek AU - Majnemer, Annette AU - Ogourtsova, Tatiana AU - Bolduc, Francois PY - 2024/6/18 TI - Developing a Chatbot to Support Individuals With Neurodevelopmental Disorders: Tutorial JO - J Med Internet Res SP - e50182 VL - 26 KW - chatbot KW - user interface KW - knowledge graph KW - neurodevelopmental disability KW - autism KW - intellectual disability KW - attention-deficit/hyperactivity disorder UR - https://www.jmir.org/2024/1/e50182 UR - http://dx.doi.org/10.2196/50182 UR - http://www.ncbi.nlm.nih.gov/pubmed/38888947 ID - info:doi/10.2196/50182 ER - TY - JOUR AU - Tahmasebi, Neda AU - Zarifian, Talieh AU - Ashtari, Atieh AU - Biglarian, Akbar PY - 2024/4/19 TI - Telepractice Parent Training of Enhanced Milieu Teaching With Phonological Emphasis (EMT+PE) For Persian-Speaking Toddlers With Nonsyndromic Cleft Palate: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e54426 VL - 13 KW - telepractice KW - cleft palate KW - language intervention KW - parent training KW - Phonological Emphasis KW - Enhanced Milieu Teaching KW - Persian-speaking toddlers KW - toddler KW - toddlers KW - children KW - child KW - cleft lip KW - language development KW - speech sound disorders KW - speech sound disorder KW - effectiveness KW - parent-based KW - intervention KW - speech KW - therapy N2 - Background: Children born with a cleft palate with or without a cleft lip (CP/L) are at increased risk for delayed language development and speech sound disorders. Enhanced Milieu Teaching with Phonological Emphasis (EMT+PE) is a recommended naturalistic intervention for toddlers with CP/L. The parents? role in providing naturalistic interventions is critical and they need training based on learning principles to implement these interventions. Telepractice is an appropriate method for training parents and children with various speech-related disorders. Objective: This study aims to determine and compare the effectiveness of telepractice and the parent-implemented EMT+PE intervention on language and speech measures in toddlers with CP/L with usual interventions and determine the effectiveness maintenance of the intervention. Methods: A randomized controlled trial (RCT) will assess the efficacy of telepractice and the parent-implemented EMT+PE intervention in enhancing speech and language measures in toddlers with CP/L. Eligible participants will be randomly assigned to one of 2 groups: the conventional intervention group and the EMT+PE intervention group. Participants? speech and language measures will be evaluated remotely by trained raters before and after the intervention and 2 months after the intervention. Parents of participants in the intervention group will receive 3 months of training in speech and language supportive strategies from trained therapists using telehealth fidelity scales. Parents of participants in the control group will receive the conventional speech and language intervention by cleft team therapists. Study outcomes will include language variables (mean length of utterance) and speech production variables (percent correct consonants). Results: The protocol was approved by the Research Ethics Committee of the University of Social Welfare and Rehabilitation Sciences in February 2022. The selection process of participants, as well as training therapists and raters, commenced in January 2022, the therapy and follow-up period ended in June 2023, and pre- and postintervention assessments have been conducted. Data analysis is ongoing, and we expect to publish our results by the summer of 2024. Funding is yet to be received. Conclusions: The results of this study may help us develop a speech and language intervention with a different delivery model for toddlers with CP/L, and the cleft team care can use these results in service delivery. Consistent with our hypothesis, speech and language measures are expected to improve. International Registered Report Identifier (IRRID): DERR1-10.2196/54426 UR - https://www.researchprotocols.org/2024/1/e54426 UR - http://dx.doi.org/10.2196/54426 UR - http://www.ncbi.nlm.nih.gov/pubmed/38640014 ID - info:doi/10.2196/54426 ER - TY - JOUR AU - Tian, Fenglin AU - Zhong, Xinqi AU - Ye, Yufeng AU - Liu, Xiaohan AU - He, Guanhao AU - Wu, Cuiling AU - Chen, Zhiqing AU - Zhu, Qijiong AU - Yu, Siwen AU - Fan, Jingjie AU - Yao, Huan AU - Ma, Wenjun AU - Dong, Xiaomei AU - Liu, Tao PY - 2024/4/17 TI - Mutual Associations of Exposure to Ambient Air Pollutants in the First 1000 Days of Life With Asthma/Wheezing in Children: Prospective Cohort Study in Guangzhou, China JO - JMIR Public Health Surveill SP - e52456 VL - 10 KW - pregnancy KW - air pollution KW - asthma KW - wheezing KW - birth cohort KW - children N2 - Background: The first 1000 days of life, encompassing pregnancy and the first 2 years after birth, represent a critical period for human health development. Despite this significance, there has been limited research into the associations between mixed exposure to air pollutants during this period and the development of asthma/wheezing in children. Furthermore, the finer sensitivity window of exposure during this crucial developmental phase remains unclear. Objective: This study aims to assess the relationships between prenatal and postnatal exposures to various ambient air pollutants (particulate matter 2.5 [PM2.5], carbon monoxide [CO], sulfur dioxide [SO2], nitrogen dioxide [NO2], and ozone [O3]) and the incidence of childhood asthma/wheezing. In addition, we aimed to pinpoint the potential sensitivity window during which air pollution exerts its effects. Methods: We conducted a prospective birth cohort study wherein pregnant women were recruited during early pregnancy and followed up along with their children. Information regarding maternal and child characteristics was collected through questionnaires during each round of investigation. Diagnosis of asthma/wheezing was obtained from children?s medical records. In addition, maternal and child exposures to air pollutants (PM2.5 CO, SO2, NO2, and O3) were evaluated using a spatiotemporal land use regression model. To estimate the mutual associations of exposure to mixed air pollutants with the risk of asthma/wheezing in children, we used the quantile g-computation model. Results: In our study cohort of 3725 children, 392 (10.52%) were diagnosed with asthma/wheezing. After the follow-up period, the mean age of the children was 3.2 (SD 0.8) years, and a total of 14,982 person-years were successfully followed up for all study participants. We found that each quartile increase in exposure to mixed air pollutants (PM2.5, CO, SO2, NO2, and O3) during the second trimester of pregnancy was associated with an adjusted hazard ratio (HR) of 1.24 (95% CI 1.04-1.47). Notably, CO made the largest positive contribution (64.28%) to the mutual effect. After categorizing the exposure according to the embryonic respiratory development stages, we observed that each additional quartile of mixed exposure to air pollutants during the pseudoglandular and canalicular stages was associated with HRs of 1.24 (95% CI 1.03-1.51) and 1.23 (95% CI 1.01-1.51), respectively. Moreover, for the first year and first 2 years after birth, each quartile increment of exposure to mixed air pollutants was associated with HRs of 1.65 (95% CI 1.30-2.10) and 2.53 (95% CI 2.16-2.97), respectively. Notably, SO2 made the largest positive contribution in both phases, accounting for 50.30% and 74.70% of the association, respectively. Conclusions: Exposure to elevated levels of mixed air pollutants during the first 1000 days of life appears to elevate the risk of childhood asthma/wheezing. Specifically, the second trimester, especially during the pseudoglandular and canalicular stages, and the initial 2 years after birth emerge as crucial susceptibility windows. Trial Registration: Chinese Clinical Trial Registry ChiCTR-ROC-17013496; https://tinyurl.com/2ctufw8n UR - https://publichealth.jmir.org/2024/1/e52456 UR - http://dx.doi.org/10.2196/52456 UR - http://www.ncbi.nlm.nih.gov/pubmed/38631029 ID - info:doi/10.2196/52456 ER - TY - JOUR AU - Howdle, Charlotte AU - Wright, Alexander William James AU - Mant, Jonathan AU - De Simoni, Anna PY - 2024/4/16 TI - Factors Influencing Recovery From Pediatric Stroke Based on Discussions From a UK-Based Online Stroke Community: Qualitative Thematic Study JO - J Med Internet Res SP - e49409 VL - 26 KW - child KW - stroke KW - rehabilitation KW - barriers KW - facilitators KW - internet-based intervention KW - self-help group KW - thematic analysis N2 - Background: The incidence of stroke in children is low, and pediatric stroke rehabilitation services are less developed than adult ones. Survivors of pediatric stroke have a long poststroke life expectancy and therefore have the potential to experience impairments from their stroke for many years. However, there are relatively few studies characterizing these impairments and what factors facilitate or counteract recovery. Objective: This study aims to characterize the main barriers to and facilitators of recovery from pediatric stroke. A secondary aim was to explore whether these factors last into adulthood, whether they change, or if new factors impacting recovery emerge in adulthood. Methods: We performed a qualitative thematic analysis based on posts from a population of participants from a UK-based online stroke community, active between 2004 and 2011. The analysis focused on users who talked about their experiences with pediatric stroke, as identified by a previous study. The posts were read by 3 authors, and factors influencing recovery from pediatric stroke were mapped into 4 areas: medical, physical, emotional, and social. Factors influencing recovery were divided into short-term and long-term factors. Results: There were 425 posts relating to 52 survivors of pediatric stroke. Some survivors of stroke posted for themselves, while others were talked about by a third party (mostly parents; 31/35, 89% mothers). In total, 79% (41/52) of survivors of stroke were aged ?18 years and 21% (11/52) were aged >18 years at the time of posting. Medical factors included comorbidities as a barrier to recovery. Medical interventions, such as speech and language therapy and physiotherapy, were also deemed useful. Exercise, particularly swimming, was deemed a facilitator. Among physical factors, fatigue and chronic pain could persist decades after a stroke, with both reported as a barrier to feeling fully recovered. Tiredness could worsen existing stroke-related impairments. Other long-standing impairments were memory loss, confusion, and dizziness. Among emotional factors, fear and uncertainty were short-term barriers, while positivity was a major facilitator in both short- and long-term recovery. Anxiety, grief, and behavioral problems hindered recovery. The social barriers were loneliness, exclusion, and hidden disabilities not being acknowledged by third parties. A good support network and third-party support facilitated recovery. Educational services were important in reintegrating survivors into society. Participants reported that worrying about losing financial support, such as disability allowances, and difficulties in obtaining travel insurance and driving licenses impacted recovery. Conclusions: The lived experience of survivors of pediatric stroke includes long-term hidden disabilities and barriers to rehabilitation. These are present in different settings, such as health care, schools, workplaces, and driving centers. Greater awareness of these issues by relevant professional groups may help ameliorate them. UR - https://www.jmir.org/2024/1/e49409 UR - http://dx.doi.org/10.2196/49409 UR - http://www.ncbi.nlm.nih.gov/pubmed/38625726 ID - info:doi/10.2196/49409 ER - TY - JOUR AU - Maenhout, Laura AU - Latomme, Julie AU - Cardon, Greet AU - Crombez, Geert AU - Van Hove, Geert AU - Compernolle, Sofie PY - 2024/1/11 TI - Synergizing the Behavior Change Wheel and a Cocreative Approach to Design a Physical Activity Intervention for Adolescents and Young Adults With Intellectual Disabilities: Development Study JO - JMIR Form Res SP - e51693 VL - 8 KW - Behavior Change Wheel KW - cocreation KW - intervention KW - physical activity KW - adolescents KW - young adults KW - intellectual disabilities N2 - Background: There is a need for physical activity promotion interventions in adolescents and young adults with intellectual disabilities. Current interventions have shown limited effectiveness, which may be attributed to the absence of theory and a population-specific development. Combining a planning model (including theory) and cocreation with the target audience during intervention development could potentially address this gap. Objective: This study aimed to report the systematic development of the Move it, Move ID! intervention by describing how the 8 different steps of the Behavior Change Wheel (BCW) were applied and present the results that emerged from those steps. In doing so, the (theoretical) content of the intervention is described in detail. Methods: A total of 23 adolescents and young adults (aged 14-22 years) with mild to moderate intellectual disabilities were designated as cocreators of the intervention. Across 2 groups, 6 similar cocreation sessions were organized in each. The content and sequence of the sessions were structured to align with the 8 steps of the BCW. All sessions were recorded and transcribed verbatim. Both a deductive (ie, steps of the BCW) and inductive (ie, resonating the voice of the participants) analysis approach were applied specifically focusing on identifying and describing the findings within each of the BCW steps. Results: After behavioral analysis (steps 1-4), 10 intervention goals were chosen and linked to Capability, Opportunity, and Motivation?Behavior components (theory within the BCW) that needed to be addressed. Psychological capability, social opportunity, and reflective motivation were emphasized as the first targets to focus on. A key finding was the urge for real-life social connectedness and social integration, which makes the social component as part of physical activity a central theme to focus on within intervention development. Judgments on the most suitable intervention functions (step 5) and behavior change techniques (step 7) were explained. When discussing the mode of delivery of the intervention (step 8), it was underscored that solely relying on a mobile health app would not fulfill participants? social needs. Hence, the chosen intervention adopts a dyadic approach in which young individuals with intellectual disabilities are matched with peers without intellectual disabilities to engage in physical activities together, with a mobile app playing a supportive role in this partnership. Conclusions: The transparent description of the development process highlights why certain intervention components and behavior change techniques were chosen and how they are intertwined by means of the selected intervention design. This paper provides a detailed blueprint for practitioners wanting to integrate the BCW and its associated behavior change techniques, in combination with actively involving the target group, into their intervention development for people with intellectual disabilities. UR - https://formative.jmir.org/2024/1/e51693 UR - http://dx.doi.org/10.2196/51693 UR - http://www.ncbi.nlm.nih.gov/pubmed/38206648 ID - info:doi/10.2196/51693 ER - TY - JOUR AU - Lindsay, Sally AU - Kosareva, Polina AU - Thomson, Nicole AU - Stinson, Jennifer PY - 2023/12/8 TI - A Codeveloped Web-Based Disability Disclosure Toolkit for Youth With Disabilities: Mixed Methods Pilot Evaluation JO - JMIR Form Res SP - e48609 VL - 7 KW - disability KW - disclosure KW - employment KW - vocational rehabilitation KW - youth and young adults KW - usability testing KW - qualitative KW - pilot study KW - co-design N2 - Background: Youth and young adults with disabilities experience many barriers in securing employment such as discrimination, inaccessible environments, and lack of support. Youth often need to decide whether and how they should disclose their need for accommodations to employers, which can help them to do their best at work. However, few evidence-based toolkits focusing on disability disclosure exist for youth with various types of disabilities. Supporting youth to develop self-advocacy skills is salient because they are an underrepresented and marginalized group in the labor market. Objective: The objective of this study was to conduct a pilot evaluation of a web-based toolkit to enhance disability disclosure for youth and young adults helping to advocate for their needs and request workplace accommodations. Methods: We conducted 2 in-person focus groups to codevelop a web-based disability disclosure toolkit, which was followed by a pilot evaluation with a pre-post survey. Primary outcomes focused on the relevance of the toolkit content, preliminary perceived impact on knowledge and confidence, and open-ended feedback on the usefulness of the toolkit. Secondary outcomes focused on effectiveness (ie, measures of self-determination). Results: A total of 14 youths with various types of disabilities took part in the study (aged 20-25 years; n=11, 78% female) including 3 who participated in the codevelopment focus group sessions and 11 youths who participated in the surveys. Our findings involved three main themes in the codevelopment sessions that included (1) disability disclosure and workplace accommodation experiences (ie, knowing when, whether, and how to disclose their disability and request workplace accommodations), (2) usefulness of the tool (ie, relatable content, format and design, and suggestions for further development), and (3) perceived impact of the toolkit (ie, navigating disclosure decisions and how to approach employers and develop other relevant employment skills). The survey findings showed that the majority of participants (10/11, 91%) reported that the toolkit increased or changed their knowledge or understanding of disability disclosure. Most participants (8/11, 73%) reported that the toolkit helped to increase their perceived confidence in their daily activities. The majority of participants (8/11, 73%) agreed or strongly agreed that the toolkit was easy to understand and comprehensive. Regarding the preliminary impact of the toolkit, participants did not demonstrate any significant improvements in self-determination (all P>.05). Conclusions: Our findings emphasize the importance of codeveloping a disability disclosure toolkit with youth to enhance its relevance for their needs. Our toolkit indicates preliminary potential as an educational resource for youth and young adults with disabilities as they search for and secure employment. Further research is needed to assess the impact of the tool with larger samples to understand the impact of workplace disability disclosure decisions for youth with disabilities. UR - https://formative.jmir.org/2023/1/e48609 UR - http://dx.doi.org/10.2196/48609 UR - http://www.ncbi.nlm.nih.gov/pubmed/38064264 ID - info:doi/10.2196/48609 ER - TY - JOUR AU - Chu, Liting AU - Shen, Li AU - Ma, Chenhuan AU - Chen, Jinjin AU - Tian, Yuan AU - Zhang, Chuncao AU - Gong, Zilan AU - Li, Mengfan AU - Wang, Chengjie AU - Pan, Lizhu AU - Zhu, Peiying AU - Wu, Danmai AU - Wang, Yu AU - Yu, Guangjun PY - 2023/8/24 TI - Effects of a Nonwearable Digital Therapeutic Intervention on Preschoolers With Autism Spectrum Disorder in China: Open-Label Randomized Controlled Trial JO - J Med Internet Res SP - e45836 VL - 25 KW - autism spectrum disorder KW - digital therapy KW - nonwearable KW - preschoolers KW - randomized controlled trial KW - autism KW - neurodevelopmental disorder KW - difficulty with communication KW - social interaction KW - ADHD KW - attention-deficit/hyperactivity disorder KW - digital intervention N2 - Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder that can cause difficulty with communication and social interactions as well as complicated family dynamics. Digital health interventions can reduce treatment costs and promote healthy lifestyle changes. These therapies can be adjunctive or replace traditional treatments. However, issues with cooperation and compliance prevent preschool patients with ASD from applying these tools. In this open-label, randomized controlled trial, we developed a nonwearable digital therapy called virtual reality?incorporated cognitive behavioral therapy (VR-CBT). Objective: The aim of this study was to assess the adjunctive function of VR-CBT by comparing the effects of VR-CBT plus learning style profile (LSP) intervention with those of LSP-only intervention in preschool children with ASD. Methods: This trial was performed in China on 78 preschool children (age 3-6 years, IQ>70) diagnosed with ASD who were randomized to receive a 20-week VR-CBT plus LSP intervention (intervention group, 39/78, 50%) or LSP intervention only (control group, 39/78, 50%). The primary outcome was the change of scores from baseline to week 20, assessed by using the parent-rated Autism Behavior Checklist (ABC). Secondary outcomes included the Childhood Autism Rating Scale (CARS), Attention-Deficit/Hyperactivity Disorder Rating Scale-IV (ADHD-RS-IV), and behavioral performance data (accuracy and reaction time) in go/no-go tasks. All primary and secondary outcomes were analyzed in the intention-to-treat population. Results: After the intervention, there was an intervention effect on total ABC (?=?5.528; P<.001) and CARS scores (?=?1.365; P=.02). A similar trend was observed in the ABC subscales: sensory (?=?1.133; P=.047), relating (?=?1.512; P=.03), body and object use (?=?1.211; P=.03), and social and self-help (?=?1.593; P=.03). The intervention also showed statistically significant effects in improving behavioral performance (go/no-go task, accuracy, ?=2.923; P=.04). Moreover, a significant improvement of ADHD hyperactivity-impulsivity symptoms was observed in 53 children with comorbid ADHD based on ADHD-RS-IV (?=?1.269; P=.02). No statistically significant intervention effect was detected in the language subscale of ABC (?=?.080; P=.83). Intervention group girls had larger improvements in ABC subscales, that is, sensory and body and object use and in the CARS score and accuracy of go/no-go task (all P<.05) than the control group girls. Statistically significant intervention effects could be observed in hyperactivity-impulsivity symptoms in the intervention group boys with comorbid ADHD compared with those in the control group boys (?=?1.333; P=.03). Conclusions: We found potentially positive effects of nonwearable digital therapy plus LSP on core symptoms associated with ASD, leading to a modest improvement in the function of sensory, motor, and response inhibition, while reducing impulsivity and hyperactivity in preschoolers with both ASD and ADHD. VR-CBT was found to be an effective and feasible adjunctive digital tool. Trial Registration: Chinese Clinical Trial Registry ChiCTR2100053165; http://www.chictr.org.cn/showproj.aspx?proj=137016 UR - https://www.jmir.org/2023/1/e45836 UR - http://dx.doi.org/10.2196/45836 UR - http://www.ncbi.nlm.nih.gov/pubmed/37616029 ID - info:doi/10.2196/45836 ER - TY - JOUR AU - Li, Longxi AU - Wang, Anni AU - Fang, Qun AU - Moosbrugger, E. Michelle PY - 2023/6/28 TI - Physical Activity Interventions for Improving Cognitive Functions in Children With Autism Spectrum Disorder: Protocol for a Network Meta-Analysis of Randomized Controlled Trials JO - JMIR Res Protoc SP - e40383 VL - 12 KW - children KW - autism spectrum disorder KW - physical activity KW - cognitive outcomes KW - network meta-analysis N2 - Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder that affects millions of children worldwide, with a current prevalence of approximately 1 in 54 children in the United States. Although the precise mechanisms underlying ASD remain unclear, research has shown that early intervention can have a significant impact on cognitive development and outcomes in children with ASD. Physical activity interventions have emerged as a promising intervention for children with ASD, but the efficacy of different types of interventions remains unclear. Objective: This study protocol aims to update the knowledge on extant literature and explore the efficacy of physical activity intervention strategies on cognitive functions in children with ASD. Methods: A systematic review and network meta-analysis (NMA) will be conducted following the PRISMA-NMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols for Network Meta-Analyses) statement. A total of 9 bibliographic databases (APA PsycInfo, CENTRAL, Dimensions, ERIC, MEDLINE Complete, PubMed, Scopus, SPORTDiscus, and Web of Science) will be systematically searched to screen eligible articles based on a series of inclusion and exclusion criteria. A study will be considered for inclusion if it is not classified as a systematic review with or without meta-analysis, was published from inception to present, includes children aged 0 to 12 years with ASD, quantitively measures cognitive outcomes, and examines treatment comprising at least 1 physical activity intervention strategy. The internal validity and quality of evidence will be evaluated using the Grading of Recommendations Assessment, Development, and Evaluation framework. Statistical analyses will be performed in the RStudio software (version 3.6; RStudio Inc) with the BUGSnet package and the Comprehensive Meta-Analysis software (version 3.3; Biostat Inc). The results of our NMA will be illustrated through network diagrams accompanied by geometry and league tables. Further, to rank the interventions based on their efficacy, we will use the surface under the cumulative ranking curve. Results: Our preliminary search identified 3778 potentially relevant studies. The screening of the studies based on the inclusion and exclusion criteria is ongoing, and we anticipate that the final number of eligible studies will be in the range of 30 to 50. Conclusions: This study will provide a comprehensive review of the literature on physical activity interventions for children with ASD and will use NMA to compare the efficacy of different types of interventions on cognitive outcomes. Our findings will have important implications for clinical practice and future research in this area and will contribute to the growing body of evidence supporting the use of physical activity interventions as a key component of early intervention for children with ASD. Trial Registration: PROSPERO CRD42021279054; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=279054 International Registered Report Identifier (IRRID): DERR1-10.2196/40383 UR - https://www.researchprotocols.org/2023/1/e40383 UR - http://dx.doi.org/10.2196/40383 UR - http://www.ncbi.nlm.nih.gov/pubmed/37379078 ID - info:doi/10.2196/40383 ER - TY - JOUR AU - Palermo, H. Emma AU - Young, V. Amanda AU - Deswert, Sky AU - Brown, Alyssa AU - Goldberg, Miranda AU - Sultanik, Evan AU - Tan, Jessica AU - Mazefsky, A. Carla AU - Brookman-Frazee, Lauren AU - McPartland, C. James AU - Goodwin, S. Matthew AU - Pennington, Jeffrey AU - Marcus, C. Steven AU - Beidas, S. Rinad AU - Mandell, S. David AU - Nuske, J. Heather PY - 2023/6/26 TI - A Digital Mental Health App Incorporating Wearable Biosensing for Teachers of Children on the Autism Spectrum to Support Emotion Regulation: Protocol for a Pilot Randomized Controlled Trial JO - JMIR Res Protoc SP - e45852 VL - 12 KW - digital mental health KW - just-in-time adaptive intervention augmentation KW - JITAI KW - autism KW - heart rate tracking KW - emotion dysregulation KW - challenging behavior KW - evidence-based strategies KW - student progress monitoring KW - mobile phone N2 - Background: As much as 80% of children on the autism spectrum exhibit challenging behaviors (ie, behaviors dangerous to the self or others, behaviors that interfere with learning and development, and behaviors that interfere with socialization) that can have a devastating impact on personal and family well-being, contribute to teacher burnout, and even require hospitalization. Evidence-based practices to reduce these behaviors emphasize identifying triggers (events or antecedents that lead to challenging behaviors); however, parents and teachers often report that challenging behaviors surface with little warning. Exciting recent advances in biometric sensing and mobile computing technology allow the measurement of momentary emotion dysregulation using physiological indexes. Objective: We present the framework and protocol for a pilot trial that will test a mobile digital mental health app, the KeepCalm app. School-based approaches to managing challenging behaviors in children on the autism spectrum are limited by 3 key factors: children on the autism spectrum often have difficulties in communicating their emotions; it is challenging to implement evidence-based, personalized strategies for individual children in group settings; and it is difficult for teachers to track which strategies are successful for each child. KeepCalm aims to address those barriers by communicating children?s stress to their teachers using physiological signaling (emotion dysregulation detection), supporting the implementation of emotion regulation strategies via smartphone pop-up notifications of top strategies for each child according to their behavior (emotion regulation strategy implementation), and easing the task of tracking outcomes by providing the child?s educational team with a tool to track the most effective emotion regulation strategies for that child based on physiological stress reduction data (emotion regulation strategy evaluation). Methods: We will test KeepCalm with 20 educational teams of students on the autism spectrum with challenging behaviors (no exclusion based on IQ or speaking ability) in a pilot randomized waitlist-controlled field trial over a 3-month period. We will examine the usability, acceptability, feasibility, and appropriateness of KeepCalm as primary outcomes. Secondary preliminary efficacy outcomes include clinical decision support success, false positives or false negatives of stress alerts, and the reduction of challenging behaviors and emotion dysregulation. We will also examine technical outcomes, including the number of artifacts and the proportion of time children are engaged in high physical movement based on accelerometry data; test the feasibility of our recruitment strategies; and test the response rate and sensitivity to change of our measures, in preparation for a future fully powered large-scale randomized controlled trial. Results: The pilot trial will begin by September 2023. Conclusions: Results will provide key data about important aspects of implementing KeepCalm in preschools and elementary schools and will provide preliminary data about its efficacy to reduce challenging behaviors and support emotion regulation in children on the autism spectrum. Trial Registration: ClinicalTrials.gov NCT05277194; https://www.clinicaltrials.gov/ct2/show/NCT05277194 International Registered Report Identifier (IRRID): PRR1-10.2196/45852 UR - https://www.researchprotocols.org/2023/1/e45852 UR - http://dx.doi.org/10.2196/45852 UR - http://www.ncbi.nlm.nih.gov/pubmed/37358908 ID - info:doi/10.2196/45852 ER - TY - JOUR AU - Movahed, Mehrnoosh AU - Rue, Ishana AU - Yoo, Yejong Paul AU - Sogomonian, Tamara AU - Majnemer, Annette AU - Shikako, Keiko PY - 2023/5/4 TI - Characteristics of Inclusive Web-Based Leisure Activities for Children With Disabilities: Qualitative Descriptive Study JO - JMIR Pediatr Parent SP - e38236 VL - 6 KW - children with disabilities KW - social inclusion KW - participation KW - accessibility KW - leisure KW - web-based activities KW - pandemic N2 - Background: The participation of children with disabilities in leisure activities is a key determinant of their physical and mental health. The COVID-19 pandemic has limited participation in leisure activities for all children, particularly those with disabilities. As a result, children with disabilities may be less active while feeling more isolated and stressed. Web-based communities and activities have become increasingly important. Understanding how web-based activities include or exclude children with disabilities can contribute to the development of inclusive communities that may support participation after the pandemic. Objective: This study aimed to identify factors that may facilitate or prevent the participation of children with disabilities in web-based leisure activities. Methods: We adopted a qualitative descriptive interpretative methodology and conducted interviews with 2 groups of participants: service providers offering inclusive web-based leisure activities and parents of children with disabilities who have engaged in web-based leisure activities during the COVID-19 pandemic. A semistructured interview format was created based on the Theoretical Domains Framework. The questions focused on the description of the web-based activities offered by the service provider (eg, age range, frequency, cost, target population, and type of activity offered) and any adaptations to make the web-based activity accessible to children and youth with disabilities, and their perceptions and beliefs about what supported or deterred participation in the activities. Results: A total of 17 participants described their experiences in participating in and creating web-based leisure programs and the factors preventing or facilitating children?s participation in web-based activities. Environment and context factors included accommodations, the format of activities and the web-based setting, stakeholder involvement, and materials and resources available. Activities that had flexible schedules, both recorded and live options for joining, and that provided clear instructions and information were perceived as more accessible. Beliefs involved the characteristics of the child and the family environment, as well as the characteristics of the organizations providing the activity. Activity facilitators who were familiar with the web-based environment and knew the specific characteristics of the child facilitated their participation. Engagement in community champions and respect for children?s individual preferences were perceived as positive. Access to technology, funding, and caregivers? ability to facilitate child engagement are crucial factors that must be considered when offering web-based programs. Conclusions: Web-based environments offer an accessible and safe option for leisure participation when public health conditions prevent children with disabilities from participating in in-person activities. However, to make web-based activities accessible to children with a variety of disabilities, there needs to be a clear plan toward universal web-based accessibility that accounts for individual needs and collective approaches to web-based leisure. Future work should consider developing and testing guidelines for web-based accessibility, equity, public policy, and programming considerations in offering these activities for all children. UR - https://pediatrics.jmir.org/2023/1/e38236 UR - http://dx.doi.org/10.2196/38236 UR - http://www.ncbi.nlm.nih.gov/pubmed/36668903 ID - info:doi/10.2196/38236 ER - TY - JOUR AU - Lindsay, Sally AU - Thomson, Nicole AU - Moll, Sandra AU - Colantonio, Angela AU - Stinson, Jennifer PY - 2023/3/24 TI - A Web-Based Gender-Sensitive Educational Simulation on Vocational Rehabilitation for Service Providers Working With Youth With Disabilities: Pilot Evaluation JO - JMIR Form Res SP - e38540 VL - 7 KW - continuing professional development KW - CME KW - medical education KW - professional development KW - continuing education KW - gender-sensitive care KW - online KW - gender KW - education KW - simulator KW - simulation KW - clinician KW - pilot KW - youth KW - young KW - disabled KW - disability KW - child KW - pediatric KW - disabilities KW - trainee KW - community KW - training KW - tool KW - rehabilitation KW - feedback KW - survey N2 - Background: Although there is a need for gender-specific health care, especially within the context of vocational rehabilitation for youth with disabilities, clinicians, trainees, and community service providers commonly report lacking training in gender-sensitive approaches. Therefore, an educational tool designed for clinicians working with youth, that addresses how to approach such issues, could help clinicians to augment the care they provide. Objective: The objective of our study was to conduct a pilot evaluation of an educational simulation for health care and service providers focusing on gender-sensitive approaches within the context of supporting youth with disabilities in vocational rehabilitation. Methods: We conducted a survey from May to September 2021 to assess the relevance of the simulation content, preliminary perceived impact on gender-sensitive knowledge and confidence, and open-ended feedback of a web-based gender-sensitive educational simulation. A total of 12 health care providers from a variety of professions who had experience working with youth in the context of vocational rehabilitation participated in the survey (11 women and 1 man). Results: Most participants reported that the content of the simulation was relevant and comprehensive. The majority of participants reported that the simulation helped to increase their perceived knowledge or understanding of the topic, changed their perceived understanding of their intervention or approach, and informed their perceived confidence. Our qualitative findings from the open-ended questions highlighted three main themes: (1) relevance of the simulation content, (2) perceived impact for clinical practice (ie, gender-sensitive language and communication and building rapport with patients), and (3) perceived impact on organizational processes (ie, practices, policy, and privacy). Conclusions: Our educational simulation shows preliminary potential as an educational tool for service providers working with youth who have a disability within the context of vocational rehabilitation. Further research is needed to assess the impact of the tool with larger samples. UR - https://formative.jmir.org/2023/1/e38540 UR - http://dx.doi.org/10.2196/38540 UR - http://www.ncbi.nlm.nih.gov/pubmed/36961496 ID - info:doi/10.2196/38540 ER - TY - JOUR AU - Shrestha, Manisha AU - Bhandari, Gopal AU - Kamalakannan, Sureshkumar AU - Murthy, Satyanarayana Gudlavalleti Venkata AU - Rathi, Kumar Suresh AU - Gudlavalleti, Gaurang Anirudh AU - Agiwal, Varun AU - Pant, Hira AU - Pandey, Binod AU - Ghimire, Ramesh AU - Ale, Daman AU - Kayastha, Sajani AU - Karki, Rakshya AU - Chaudhary, Shankar Daya AU - Byanju, Raghunandan AU - PY - 2023/2/23 TI - Evaluating the Effectiveness of Interventions to Improve the Follow-up Rate for Children With Visual Disabilities in an Eye Hospital in Nepal: Nonrandomized Study JO - JMIR Pediatr Parent SP - e43814 VL - 6 KW - counseling KW - follow-up KW - intervention study KW - Nepal KW - ophthalmology KW - pediatrics KW - public health N2 - Background: Monitoring ocular morbidity among pediatric patients requires regular follow-up visits. We found that the follow-up rate was poor among children in our setting. Therefore, we intended to assess the effectiveness of 2 interventions?(1) counseling and (2) SMS text messaging and phone calls?to improve the follow-up rates. Objective: This study aimed to evaluate the effectiveness of 2 interventions, counseling and SMS and phone calls group, as well as a routine standard care for improving the follow-up rate of pediatric patients. Methods: A Nonrandomized, quasiexperimental design was used. Children (aged 0-16 years) with ocular conditions requiring at least 3 follow-up visits during the study period were included. A total of 264 participants were equally allocated to the 3 intervention groups of (1) counseling, (2) SMS and phone calls, and (3) routine standard care group. A 20-minute counseling session by a trained counselor with the provision of disease-specific leaflets were given to those in the counseling group. For the second intervention group, parents of children received an SMS text 3 days before and a phone call 1 day before their scheduled follow-up visits. Participants allocated for the routine standard care group were provided with the existing services with no additional counseling and reminders. Participants attending 3 follow-ups within 2 days of the scheduled visit date were considered compliant. The difference in and among the proportion of participants completing all 3 follow-up visits in each group was assessed. Results: The demographic characteristics of the participants were similar across the study groups. Only 3% (8/264) of participants completed all 3 follow-up visits, but overall compliance with the follow-up, as defined by the investigators, was found to be only 0.76% (2/264). There was no statistically significant difference in the proportion of follow-up between the intervention groups. However, the proportion of participants attending the first and second follow-ups, as well as the overall total number of follow-ups, was more in the SMS and phone-call group followed by the counseling group. Conclusions: We did not find any evidence on the effectiveness of our interventions to improve the follow-up rate. The primary reason could be that this study was conducted during the COVID-19 pandemic. It could also be possible that the intensity of the interventions may have influenced the outcomes. A rigorously designed study during the absence of any lockdown restrictions is warranted to evaluate intervention effectiveness. The study also provides useful insights and highlights the importance of designing and systematically developing interventions for improving the follow-up rate and ensuring a continuum of care to children with visual disabilities in Nepal and similar contexts. Trial Registration: ClinicalTrials.gov NCT04837534; https://clinicaltrials.gov/ct2/show/NCT04837534 International Registered Report Identifier (IRRID): RR2-10.2196/31578 UR - https://pediatrics.jmir.org/2023/1/e43814 UR - http://dx.doi.org/10.2196/43814 UR - http://www.ncbi.nlm.nih.gov/pubmed/36821366 ID - info:doi/10.2196/43814 ER - TY - JOUR AU - Gruebner, Oliver AU - van Haasteren, Afua AU - Hug, Anna AU - Elayan, Suzanne AU - Sykora, Martin AU - Albanese, Emiliano AU - Naslund, John AU - Wolf, Markus AU - Fadda, Marta AU - von Rhein, Michael PY - 2022/12/6 TI - Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review JO - J Med Internet Res SP - e37972 VL - 24 IS - 12 KW - digital place KW - pediatric diagnoses KW - conditions KW - disability KW - neuromuscular KW - information and support seeking KW - online KW - social media KW - peer support KW - lived experience KW - parents KW - children KW - youth KW - review KW - scoping review KW - trauma KW - caregivers N2 - Background: Receiving a diagnosis that leads to severe disability in childhood can cause a traumatic experience with long-lasting emotional stress for patients and family members. In recent decades, emerging digital technologies have transformed how patients or caregivers of persons with disabilities manage their health conditions. As a result, information (eg, on treatment and resources) has become widely available to patients and their families. Parents and other caregivers can use digital platforms such as websites or social media to derive social support, usually from other patients and caregivers who share their lived experiences, challenges, and successes on these platforms. However, gaps remain in our understanding of platforms that are most frequently used or preferred among parents and caregivers of children with disabilities. In particular, it is not clear what factors primarily drive or discourage engagement with these digital tools and what the main ethical considerations are in relation to these tools. Objective: We aimed to (1) identify prominent digital platforms used by parents or caregivers of children with disabilities; (2) explore the theoretical contexts and reasons for digital platform use, as well as the experiences made with using these platforms reported in the included studies; and (3) identify any privacy and ethical concerns emerging in the available literature in relation to the use of these platforms. Methods: We conducted a scoping review of 5 academic databases of English-language articles published within the last 10 years for diseases with childhood onset disability and self-help or parent/caregiver-led digital platforms. Results: We identified 17 papers in which digital platforms used by parents of affected children predominantly included social media elements but also search engines, health-related apps, and medical websites. Information retrieval and social support were the main reasons for their utilization. Nearly all studies were exploratory and applied either quantitative, qualitative, or mixed methods. The main ethical concerns for digital platform users included hampered access due to language barriers, privacy issues, and perceived suboptimal advice (eg, due to missing empathy of medical professionals). Older and non?college-educated individuals and ethnic minorities appeared less likely to access information online. Conclusions: This review showed that limited scientifically sound knowledge exists on digital platform use and needs in the context of disabling conditions in children, as the evidence consists mostly of exploratory studies. We could highlight that affected families seek information and support from digital platforms, as health care systems seem to be insufficient for satisfying knowledge and support needs through traditional channels. UR - https://www.jmir.org/2022/12/e37972 UR - http://dx.doi.org/10.2196/37972 UR - http://www.ncbi.nlm.nih.gov/pubmed/36472896 ID - info:doi/10.2196/37972 ER - TY - JOUR AU - Paulauskaite, Laura AU - Totsika, Vasiliki AU - Rivas, Carol PY - 2022/11/7 TI - Relationships and Sex Education Outcomes for Students With Intellectual Disability: Protocol for the Development of a Core Outcome Set JO - JMIR Res Protoc SP - e39921 VL - 11 IS - 11 KW - core outcome set KW - relationships and sex education KW - intellectual disability KW - students N2 - Background: People with intellectual disability are twice as likely to experience sexual abuse, unintended pregnancies, and sexually transmitted diseases as people in the general population. Despite this, very little is known about how to deliver relationships and sex education effectively to this vulnerable population, how to measure the impact of its delivery in schools, and what stakeholders perceive as important outcomes of this education. Objective: To address these urgent issues, this study aims to develop a stakeholder consensus?based core outcome set of relationships and sex education for use in research and educational settings with students with intellectual disability. Methods: The study will use a 2-stage mixed methods design. The first stage will involve a systematic review of relationships and sex education outcomes reported in the literature, followed by qualitative exploration with caregivers, teachers and school staff, policy makers, and researchers to investigate their perspectives of meaningful outcomes of this education. Students with intellectual disability will be enabled to take part to express their views on outcomes of importance to them. The second stage will use findings from stage 1 in a 2-round web-based Delphi study with caregivers, teachers and school staff, policy makers, and researchers to develop consensus on proposed outcomes for the evaluation of relationships and sex education with this population. Results: As of September 2022, we have completed a systematic review and recruited 56 stakeholders (n=53, 95%, adults and n=3, 5%, students with intellectual disability) for the first stage of the study. We are still recruiting students with intellectual disability. Data analysis has not started yet. Recruitment for the second stage will commence in November 2022. We expect to complete the study by October 2023 and publish the results by the end of 2024. Conclusions: The development of a core outcome set of relationships and sex education will provide a significant first step to assist the implementation, delivery, evaluation, and sustainability of relationships and sex education for students with intellectual disability. Key audiences will be teachers, researchers, policy makers, and decision makers. Trial Registration: Core Outcome Measures in Effectiveness Trials 1787; https://www.comet-initiative.org/Studies/Details/1787 International Registered Report Identifier (IRRID): PRR1-10.2196/39921 UR - https://www.researchprotocols.org/2022/11/e39921 UR - http://dx.doi.org/10.2196/39921 UR - http://www.ncbi.nlm.nih.gov/pubmed/36342756 ID - info:doi/10.2196/39921 ER - TY - JOUR AU - Johnson, W. Rowan AU - White, K. Becky AU - Gucciardi, F. Daniel AU - Gibson, Noula AU - Williams, A. Sian PY - 2022/8/9 TI - Intervention Mapping of a Gamified Therapy Prescription App for Children With Disabilities: User-Centered Design Approach JO - JMIR Pediatr Parent SP - e34588 VL - 5 IS - 3 KW - neurodevelopmental disability KW - mobile health KW - self-determination theory KW - gamification KW - physiotherapy KW - occupational therapy KW - speech pathology KW - behavior change KW - mobile phone N2 - Background: Mobile health (mHealth) apps for children are increasing in availability and scope. Therapy (physiotherapy, speech pathology, and occupational therapy) prescription apps to improve home or school program adherence work best when developed to be highly engaging for children and when they incorporate behavior change techniques (BCTs) within their design. Objective: The aim of this study was to describe the development of a user-centered therapy prescription app for children (aged 6-12 years) with neurodevelopmental disabilities (eg, cerebral palsy, autism spectrum disorder, and intellectual disability) incorporating intervention mapping (IM) and gamified design. Methods: We used an iterative, user-centered app development model incorporating the first 3 steps of IM. We conducted a needs analysis with user feedback from our previous mHealth app study, a literature review, and a market audit. Change objectives were then specified in alignment with the psychological needs of autonomy, competence, and relatedness identified in self-determination theory. From these objectives, we then selected BCTs, stipulating parameters for effectiveness and how each BCT would be operationalized. A gamification design was planned and implemented focusing on maximizing engagement in children. In total, 2 rounds of consultations with parents, teachers, and therapists and 1 round of prototype app testing with children were conducted to inform app development, with a final iteration developed for further testing. Results: The IM process resulted in the specification of app elements, self-determination theory?informed BCTs, that were embedded into the app design. The gamification design yielded the selection of a digital pet avatar with a fantasy anime visual theme and multiple layers of incentives earned by completing prescribed therapy activities. Consultation groups with professionals working with children with disabilities (4 therapists and 3 teachers) and parents of children with disabilities (n=3) provided insights into the motivation of children and the pragmatics of implementing app-delivered therapy programs that informed the app development. User testing with children with disabilities (n=4) highlighted their enthusiasm for the app and the need for support in the initial phase of learning the app. App quality testing (Mobile Application Rating Scale-user version) with the children yielded means (out of 5) of 4.5 (SD 0.8) for engagement, 3.3 (SD 1.6) for function, 3.3 (SD 1.7) for aesthetics, and 4.3 (SD 1.1) for subjective quality. Conclusions: mHealth apps designed for children can be greatly enhanced with a systematic yet flexible development process considering the specific contextual needs of the children with user-centered design, addressing the need for behavior change using the IM process, and maximizing engagement with gamification and strong visual design. UR - https://pediatrics.jmir.org/2022/3/e34588 UR - http://dx.doi.org/10.2196/34588 UR - http://www.ncbi.nlm.nih.gov/pubmed/35943782 ID - info:doi/10.2196/34588 ER - TY - JOUR AU - Novak-Pavlic, Monika AU - Rosenbaum, Peter AU - Gazzi Macedo, Luciana AU - Di Rezze, Briano AU - Yong, Joshua AU - Noori, Atefeh AU - Hughes, Debra PY - 2022/7/28 TI - Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review JO - JMIR Res Protoc SP - e38686 VL - 11 IS - 7 KW - childhood disability KW - developmental disability KW - family KW - health KW - parent intervention KW - pediatric KW - children KW - parenting KW - rehabilitation KW - child development KW - health intervention KW - peer support KW - socioeconomic well-being KW - parent support KW - meta-analysis KW - quality of life N2 - Background: It is well recognized that parents of children with neurodevelopmental disabilities can experience a considerable burden of care associated with their child?s disability, which can potentially impact their functioning and quality of life. Historically, the intervention efforts in pediatric rehabilitation have focused primarily on the child?s development and well-being and much less on parental and family well-being. The impact that a child?s diagnosis might have on parents remains unclear, and it is unknown how we can best support parents on their journey of childhood disability. It is, therefore, important to synthesize the published evidence on interventions for parents of children with neurodevelopmental disabilities so that clinicians can be better informed about the ways in which families they work with can be supported. Objective: This manuscript presents the protocol for a systematic review of the effectiveness of interventions aiming to improve the physical, psychological, or socioeconomic well-being of parents of children with neurodevelopmental disabilities when compared to usual care or no care. Methods: We will systematically search 4 databases (MEDLINE, Embase, PsycINFO, and CINAHL) from the year 2000 until the search date, for randomized controlled trials that evaluated the effectiveness of interventions to improve parental physical, psychological, or socioeconomic well-being. Two authors will independently screen the titles and abstracts, which will then be followed by full-text screening. After the eligibility assessment, two reviewers will independently extract data and conduct a risk of bias assessment using the Cochrane risk-of-bias tool. We will assess the quality of evidence using the Grading of Recommendations, Assessment, Development and Evaluation approach. If the data allow, we will perform a pairwise meta-analysis or network meta-analysis. We plan to evaluate the coherence of the network with a global test by using the node-splitting method. Results: As of May 30, 2022, there have been two searches of data initiated: in September 2020 for articles published since 2000 and an updated search in January 2022 for articles published since 2020. We have screened all the titles and abstracts and performed eligibility assessment. However, the final number of references is still not available due to the additional information needed for some of the potentially eligible studies. The results from this systematic review will be published in an indexed journal within a year after this protocol is published. Conclusions: This study is expected to identify a variety of programs to address the well-being needs of parents of children with neurodevelopmental disabilities and provide directions on how parents can best be supported within health care. Such interventions might help professionals and stakeholders in creating service delivery models that can enhance parental well-being and minimize the risks to their physical, psychological, and socioeconomic functioning. Trial Registration: PROSPERO CRD42021230706; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=230706 International Registered Report Identifier (IRRID): DERR1-10.2196/38686 UR - https://www.researchprotocols.org/2022/7/e38686 UR - http://dx.doi.org/10.2196/38686 UR - http://www.ncbi.nlm.nih.gov/pubmed/35900806 ID - info:doi/10.2196/38686 ER - TY - JOUR AU - Wu, Wen-Lan AU - Huang, Yu-Ling AU - Liang, Jing-Min AU - Chen, Chia-Hsin AU - Wang, Chih-Chung AU - Ho, Wen-Hsien PY - 2022/4/15 TI - Interactive Digital Game for Improving Visual?Perceptual Defects in Children With a Developmental Disability: Randomized Controlled Trial JO - JMIR Serious Games SP - e34756 VL - 10 IS - 2 KW - interactive digital game KW - visual?perceptual defect KW - developmental disability KW - Children KW - Test of Visual Perceptual Skills KW - rehabilitation N2 - Background: Visual?perceptual defects in children can negatively affect their ability to perform activities of daily living. Conventional rehabilitation training for correcting visual?perceptual defects has limited training patterns and limited interactivity, which makes motivation difficult to sustain. Objective: We aimed to develop and evaluate an interactive digital game system for correcting visual?perceptual defects and evaluate its effectiveness. Methods: Participants were children aged 5 to 10 years with a diagnosis of visual?perceptual defect associated with a developmental disability. The children were randomized into a digital game group who received the traditional course of rehabilitation combined with an interactive digital game intervention (n=12) and a standard rehabilitation group (n=11) who only received the traditional course of rehabilitation. Each group underwent rehabilitation once a week for 4 weeks. Overall improvement in Test of Visual Perceptual Skills 3rd edition (TVPS-3) score and overall improvement in performance in the interactive digital game were evaluated. Parents and therapists were asked to complete a satisfaction questionnaire. Results: After 4 weeks, the TVPS-3 score had significantly increased (P=.002) in the digital game group (pre: mean 41.67, SD 13.88; post: 61.50, SD 21.64). In the standard rehabilitation group, the TVPS-3 score also increased, but the increase was not statistically significant (P=.58). Additionally, TVPS-3 score increases were significantly larger for the digital game group compared with those for the standard rehabilitation group (P=.005). Moreover, both parents and therapists were highly satisfied with the system. All 5 themes of satisfaction had mean scores higher than 4 in a 5-point scale questionnaire (mean 4.30, SD 0.56). Conclusions: The system has potential applications for improving visual?perceptual function in children undergoing medical rehabilitation for developmental disability. Trial Registration: ClinicalTrials.gov NCT05016492; http://clinicaltrials.gov/ct2/show/NCT05016492 UR - https://games.jmir.org/2022/2/e34756 UR - http://dx.doi.org/10.2196/34756 UR - http://www.ncbi.nlm.nih.gov/pubmed/35436215 ID - info:doi/10.2196/34756 ER - TY - JOUR AU - Chi, A. Nathan AU - Washington, Peter AU - Kline, Aaron AU - Husic, Arman AU - Hou, Cathy AU - He, Chloe AU - Dunlap, Kaitlyn AU - Wall, P. Dennis PY - 2022/4/14 TI - Classifying Autism From Crowdsourced Semistructured Speech Recordings: Machine Learning Model Comparison Study JO - JMIR Pediatr Parent SP - e35406 VL - 5 IS - 2 KW - autism KW - mHealth KW - machine learning KW - artificial intelligence KW - speech KW - audio KW - child KW - digital data KW - mobile app KW - diagnosis N2 - Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder that results in altered behavior, social development, and communication patterns. In recent years, autism prevalence has tripled, with 1 in 44 children now affected. Given that traditional diagnosis is a lengthy, labor-intensive process that requires the work of trained physicians, significant attention has been given to developing systems that automatically detect autism. We work toward this goal by analyzing audio data, as prosody abnormalities are a signal of autism, with affected children displaying speech idiosyncrasies such as echolalia, monotonous intonation, atypical pitch, and irregular linguistic stress patterns. Objective: We aimed to test the ability for machine learning approaches to aid in detection of autism in self-recorded speech audio captured from children with ASD and neurotypical (NT) children in their home environments. Methods: We considered three methods to detect autism in child speech: (1) random forests trained on extracted audio features (including Mel-frequency cepstral coefficients); (2) convolutional neural networks trained on spectrograms; and (3) fine-tuned wav2vec 2.0?a state-of-the-art transformer-based speech recognition model. We trained our classifiers on our novel data set of cellphone-recorded child speech audio curated from the Guess What? mobile game, an app designed to crowdsource videos of children with ASD and NT children in a natural home environment. Results: The random forest classifier achieved 70% accuracy, the fine-tuned wav2vec 2.0 model achieved 77% accuracy, and the convolutional neural network achieved 79% accuracy when classifying children?s audio as either ASD or NT. We used 5-fold cross-validation to evaluate model performance. Conclusions: Our models were able to predict autism status when trained on a varied selection of home audio clips with inconsistent recording qualities, which may be more representative of real-world conditions. The results demonstrate that machine learning methods offer promise in detecting autism automatically from speech without specialized equipment. UR - https://pediatrics.jmir.org/2022/2/e35406 UR - http://dx.doi.org/10.2196/35406 UR - http://www.ncbi.nlm.nih.gov/pubmed/35436234 ID - info:doi/10.2196/35406 ER - TY - JOUR AU - Yoo, Yejong Paul AU - Movahed, Mehrnoosh AU - Rue, Ishana AU - Santos, Dos Carlos Denner AU - Majnemer, Annette AU - Shikako, Keiko PY - 2022/2/25 TI - Changes in Use of a Leisure Activity Mobile App for Children With Disabilities During the COVID-19 Pandemic: Retrospective Study JO - JMIR Pediatr Parent SP - e32274 VL - 5 IS - 1 KW - COVID-19 KW - participation KW - childhood disability KW - online leisure KW - app engagement KW - mHealth KW - children KW - parents KW - mobile apps KW - mobile health KW - digital health KW - pandemic KW - online leisure activities KW - user engagement KW - app usability N2 - Background: Participation in leisure activities is essential for child development and a human right as per the United Nations Convention on the Rights of the Child. Children with disabilities face several restrictions when participating in leisure activities as compared to same age peers without disabilities. Access to information about accessible, inclusive leisure activities is one of the barriers limiting participation, and one potential health promotion strategy is to provide access to information to increase participation. The Jooay App is a mobile app listing such activities in Canada and Australia. With the COVID-19 global pandemic and subsequent public health measures, most community-based facilities providing the activities listed on Jooay were closed. The app therefore started listing online activities offered with the expectation of continuing to provide information for families and understanding the extent to which users relied on the mobile app as a tool to identify new safe leisure opportunities. Objective: This study aims to describe the engagement of the Jooay app before and during COVID-19, and to estimate the extent to which the listing of online activities was related to the engagement of the Jooay app. Methods: We conducted a retrospective study comparing Jooay app use between March 2020 and February 2021 to the engagement between March 2019 and February 2020 by Jooay users. Spearman rank correlations were carried out to identify associations between the activities listed and the users? engagement from May 2020 to February 2021. Results: Active engagement with the Jooay app from March 2020 to February 2021 dropped by an average of 135 engagements (64.2%) compared to engagements in 2019-2020. The largest monthly drop in engagement was observed in May 2020 by 239 engagements (88.8%). There was a strong positive correlation between the number of active users and the number of online activities listed on the app (rs=0.900). Conclusions: The engagement with the Jooay App presented an expected decrease during the first wave of the COVID-19 pandemic. The addition of online adapted leisure activities to the app?s listings during the pandemic increased app use. Access to information about inclusive activities is a barrier for children with disabilities to engage in leisure. Mobile health solutions can be responsive to contextual factors and consider the social determinants of health such as socioeconomic and public health emergency issues that can impact the participation of vulnerable populations such as children with disabilities and help eliminate barriers to participation. The provision of online leisure opportunities during the pandemic could facilitate participation in these activities during the pandemic and beyond, which is essential and beneficial for the physical and mental well-being of children with disabilities and their families. UR - https://pediatrics.jmir.org/2022/1/e32274 UR - http://dx.doi.org/10.2196/32274 UR - http://www.ncbi.nlm.nih.gov/pubmed/35100129 ID - info:doi/10.2196/32274 ER - TY - JOUR AU - Du, Yao AU - Choe, Sarah AU - Vega, Jennifer AU - Liu, Yusa AU - Trujillo, Adrienne PY - 2022/1/21 TI - Listening to Stakeholders Involved in Speech-Language Therapy for Children With Communication Disorders: Content Analysis of Apple App Store Reviews JO - JMIR Pediatr Parent SP - e28661 VL - 5 IS - 1 KW - eHealth KW - mobile health KW - mHealth KW - mobile app KW - communication disorders KW - speech therapy KW - language therapy KW - children KW - mobile phone N2 - Background: With the plethora of mobile apps available on the Apple App Store, more speech-language pathologists (SLPs) have adopted apps for speech-language therapy services, especially for pediatric clients. App Store reviews are publicly available data sources that can not only create avenues for communication between technology developers and consumers but also enable stakeholders such as parents and clinicians to share their opinions and view opinions about the app content and quality based on user experiences. Objective: This study examines the Apple App Store reviews from multiple key stakeholders (eg, parents, educators, and SLPs) to identify and understand user needs and challenges of using speech-language therapy apps (including augmentative and alternative communication [AAC] apps) for pediatric clients who receive speech-language therapy services. Methods: We selected 16 apps from a prior interview study with SLPs that covered multiple American Speech-Language-Hearing Association Big Nine competencies, including articulation, receptive and expressive language, fluency, voice, social communication, and communication modalities. Using an automatic Python (Python Software Foundation) crawler developed by our research team and a Really Simple Syndication feed generator provided by Apple, we extracted a total of 721 app reviews from 2009 to 2020. Using qualitative coding to identify emerging themes, we conducted a content analysis of 57.9% (418/721) reviews and synthesized user feedback related to app features and content, usability issues, recommendations for improvement, and multiple influential factors related to app design and use. Results: Our analyses revealed that key stakeholders such as family members, educators, and individuals with communication disorders have used App Store reviews as a platform to share their experiences with AAC and speech-language apps. User reviews for AAC apps were primarily written by parents who indicated that AAC apps consistently exhibited more usability issues owing to violations of design guidelines in areas of aesthetics, user errors, controls, and customization. Reviews for speech-language apps were primarily written by SLPs and educators who requested and recommended specific app features (eg, customization of visuals, recorded feedback within the app, and culturally diverse character roles) based on their experiences working with a diverse group of pediatric clients with a variety of communication disorders. Conclusions: To our knowledge, this is the first study to compile and analyze publicly available App Store reviews to identify areas for improvement within mobile apps for pediatric speech-language therapy apps from children with communication disorders and different stakeholders (eg, clinicians, parents, and educators). The findings contribute to the understanding of apps for children with communication disorders regarding content and features, app usability and accessibility issues, and influential factors that impact both AAC apps and speech-language apps for children with communication disorders who need speech therapy. UR - https://pediatrics.jmir.org/2022/1/e28661 UR - http://dx.doi.org/10.2196/28661 UR - http://www.ncbi.nlm.nih.gov/pubmed/35060912 ID - info:doi/10.2196/28661 ER - TY - JOUR AU - Teleman, Britta AU - Svedberg, Petra AU - Larsson, Ingrid AU - Karlsson, Caroline AU - Nygren, M. Jens PY - 2022/1/6 TI - A Norm-Creative Method for Co-constructing Personas With Children With Disabilities: Multiphase Design Study JO - J Particip Med SP - e29743 VL - 14 IS - 1 KW - disability KW - children KW - norm-critical KW - participatory design KW - personas KW - co-produced care KW - health care N2 - Background: An increase in the demand for child participation in health care requires tools that enable and empower children to be involved in the co-production of their own care. The development of such tools should involve children, but participatory design and research with children have challenges, in particular, when involving children with disabilities where a low level of participation is the norm. Norm-creative and participatory approaches may bring more effective design solutions for this group. ?Personas? is a methodology for increasing user perspectives in design and offers representation when users are absent. However, research on participatory persona generation in this context is limited. Objective: The objective of this study was to investigate how norm-creative and participatory design approaches can be integrated in a persona generation method to suit children with disabilities in the design of games for health that target this group. Methods: The method development involved interview transcripts and image-based workshops. Sixteen children with various disabilities participated in persona generation through co-creation of characters and scenarios. The results from the workshops were validated together with 8 children without disabilities, 1 young adult with a disability, and 1 rehabilitation professional. A qualitative thematic design analysis was iterated throughout the process. Results: The results consisted of an image-based and iterative co-construction method. It was accompanied by examples of personas that were generated and validated within a games for health case. The method showed effectiveness in enabling flexible co-construction and communication. The data resonated with social model perspectives, and the development is discussed in terms of participation levels, salutogenic descriptions of barriers, and norm-creative tradeoffs. Conclusions: The resulting method may influence future design projects toward more inclusiveness and enable increased representation for children with disabilities in research and design. Using this method to its full potential requires a norm-critical awareness as well as extensive facilitation. Suggestions for further research include the application of the method to design processes in similar contexts or user groups. UR - https://jopm.jmir.org/2022/1/e29743 UR - http://dx.doi.org/10.2196/29743 UR - http://www.ncbi.nlm.nih.gov/pubmed/34989695 ID - info:doi/10.2196/29743 ER - TY - JOUR AU - Shikako, Keiko AU - Mogo, I. Ebele R. AU - Grand-Maison, Valerie AU - Simpson, Robert AU - Pritchard-Wiart, Lesley AU - Majnemer, Annette AU - PY - 2021/9/16 TI - Designing User-Centered Mobile Health Initiatives to Promote Healthy Behaviors for Children With Disabilities: Development and Usability Study JO - JMIR Form Res SP - e23877 VL - 5 IS - 9 KW - implementation research KW - mobile health KW - children with disabilities KW - physical activity promotion KW - digital health KW - inclusive leisure participation KW - mobile phone N2 - Background: The gap between research and its practical application in community settings limits its impact on public health. Closing this gap has the potential to improve the well-being of underserved groups, such as children with disabilities. Mobile health has the potential to improve access to community resources and support for underserved populations, thereby encouraging improved health behaviors. Objective: In this feasibility pilot study, we describe the development of the mobile app Jooay. Jooay was developed in partnership with stakeholders to facilitate access to leisure and physical activity community programs for children and youth with disabilities. We also reflect on the lessons learned throughout the implementation process that are relevant for improving the health behaviors of children with disabilities. Methods: We used a participatory action research approach to develop the app. We also administered a survey to current Jooay users and analyzed various app usage indicators to explore use patterns, user feedback, and preferences. Finally, we critically appraised the implementation process through a best practices for implementation research framework. Results: We developed a product that responds to users? identified need to find information and follows accessibility and user-centered design standards. The analysis of usage data revealed that access to the Jooay app is concentrated in urban areas. Perceptions, attitudes, and information needs varied according to the type of user. The use of the mobile app changed over time, and usage decreased after the app was downloaded, indicating a need for the sustained engagement of app users. Users found value in the ability to identify activities that they would not otherwise know about. However, app use alone was not sufficient to improve participation. Although the app was developed based on users? active input in multiple iterations, we encountered challenges with survey recruitment and attrition, suggesting the need for more seamless and engaging means for collecting data within this population. Conclusions: Interactions between users and the app can sustain user engagement and behavior change. We will improve the app?s next iterations by using the information gained from this study to conduct a larger study to assess the relationship among social and material deprivation, urban design, and access to inclusive and adaptive leisure programs. This study will inform the improvement of app listings to improve the use of Jooay by different user groups and promote health through mobile apps for marginalized groups. UR - https://formative.jmir.org/2021/9/e23877 UR - http://dx.doi.org/10.2196/23877 UR - http://www.ncbi.nlm.nih.gov/pubmed/34528886 ID - info:doi/10.2196/23877 ER - TY - JOUR AU - Malone, A. Laurie AU - Davlyatov, K. Ganisher AU - Padalabalanarayanan, Sangeetha AU - Thirumalai, Mohanraj PY - 2021/8/26 TI - Active Video Gaming Using an Adapted Gaming Mat in Youth and Adults With Physical Disabilities: Observational Study JO - JMIR Serious Games SP - e30672 VL - 9 IS - 3 KW - exergaming KW - video games KW - disability KW - exercise KW - physical activity KW - enjoyment KW - dance mat KW - serious games KW - gaming mat KW - mobility impairment KW - physical impairment N2 - Background: A common leisure-time activity amongst youth and adults in the United States is video gameplay. Playing video games is typically a sedentary endeavor; however, to encourage an increased level of physical activity in an engaging and enjoyable way, active video gaming has become popular. Unfortunately, the accessibility of gaming controllers is often an issue for persons with disabilities. A commercial off-the-shelf (OTS) gaming mat was adapted to facilitate use by individuals with mobility impairments to address this issue. Objective: Our study aimed to examine energy expenditure, enjoyment, and gameplay experience in youth and adults with mobility impairment during active video gaming using an OTS and adapted versions of a gaming mat. Methods: The study used an observational design. During visit 1, physical function was assessed, and participants were given a familiarization period with the gaming system. For visit 2, based on observation during the physical function tests and discussion with the participant, it was decided whether the participant would play in a standing or seated position. For standing gameplay, the mat was placed on the floor, and for seated play, the mat was placed on a height-adjustable and tilt-adjustable tabletop. Metabolic data were collected during a 20-minute baseline and four 10-minute bouts of Wii Fit Plus gameplay, with 2 bouts on each of the mats (adapted and OTS). During gameplay, the research staff observed and rated participants? ability to use the game controller (mat) and the quality of gameplay. At the end of each game set, participants reported their rating of perceived exertion on a scale from 0 to 10. During rest, participants completed the physical activity enjoyment scale. Participants also answered additional questions regarding the system's usability with each controller (adapted mat and OTS mat). Statistical analyses were computed using Stata 16 (version 16.1; StataCorp). Linear mixed-effects maximum likelihood regression was performed separately for individuals who could play standing and for those who played seated. Results: A convenience sample of 78 individuals with mobility impairments between the ages of 12 and 60 years (mean 39.6, SD 15.8) participated in the study. Of the sample, 48 participants played the video games in a seated position, while 30 played the games standing. Energy expenditure and heart rate tended to be higher in the OTS mat condition for seated players, while values were similar for both conditions among standing players. However, seated participants reported greater gameplay experience, and both groups exhibited a higher quality of gameplay during the adapted mat condition. Conclusions: Active video gaming using an adapted gaming mat provided an enjoyable exercise activity for individuals with mobility impairments. The use of the adapted controller provides a means by which this population can engage in light to moderate intensity active video gaming, thereby reducing sedentary leisure time. Trial Registration: ClinicalTrials.gov NCT02994199; https://clinicaltrials.gov/ct2/show/NCT02994199 UR - https://games.jmir.org/2021/3/e30672 UR - http://dx.doi.org/10.2196/30672 UR - http://www.ncbi.nlm.nih.gov/pubmed/34435962 ID - info:doi/10.2196/30672 ER - TY - JOUR AU - Siedlikowski, Maia AU - Curiale, Lianna AU - Rauch, Frank AU - Tsimicalis, Argerie PY - 2021/8/10 TI - Experiences of Children With Osteogenesis Imperfecta in the Co-design of the Interactive Assessment and Communication Tool Sisom OI: Secondary Analysis of Qualitative Design Sessions JO - JMIR Pediatr Parent SP - e22784 VL - 4 IS - 3 KW - child health KW - symptom assessment KW - communication KW - mobile applications KW - software N2 - Background: Children with osteogenesis imperfecta (OI) experience a diversity of symptoms that expose them to difficult physical, mental, and social challenges. Sisom (DHealth) is an interactive assessment and communication tool designed to help children aged 6-12 years with chronic conditions express their symptoms. Recently, the co-design of the Sisom OI paper prototype was launched by seeking the perspectives of end users, including children with OI and their clinicians. Objective: The aim of this study is to describe the experiences that children with OI were prompted to share with researchers during the co-design of the Sisom OI paper prototype. Methods: A secondary analysis of qualitative data was conducted at a university-affiliated, pediatric, orthopedic hospital. The data sources consisted of interview transcripts, drawings, field notes, and observations derived from interviewing 12 children with OI who participated in the co-design of the Sisom OI paper prototype. The themes and subthemes identified from the data sources were generated using qualitative description. Results: Three themes were identified. The first, Relating to Others, described the balance between feeling different versus feeling similar to other children. The subthemes were Common OI Experience, Feeling Different, and Feeling Just Like Others. The second, Relating to Their Condition, described children?s positive and negative interactions with their own condition and health care. The subthemes were Understanding Their Condition, Special Relationship with the Hospital, and Difficult Treatments and Procedures. The third, Reflecting on Capabilities, described children?s recognition of their strengths and limitations. The subthemes were Perceiving Limitations, Overcoming Isolation, and Celebrating Strengths. Conclusions: This co-design process provided children with OI the space to not only contribute to the development of the end product but also eloquently describe their experiences. These findings, based on the descriptions given by the children themselves, offer us a unique understanding of what it means to grow up with OI. UR - https://pediatrics.jmir.org/2021/3/e22784 UR - http://dx.doi.org/10.2196/22784 UR - http://www.ncbi.nlm.nih.gov/pubmed/34383677 ID - info:doi/10.2196/22784 ER - TY - JOUR AU - Gagnon, Marianne AU - Marino Merlo, Gabriela AU - Yap, Rita AU - Collins, Jessica AU - Elfassy, Caroline AU - Sawatzky, Bonita AU - Marsh, Jacquelyn AU - Hamdy, Reggie AU - Veilleux, Louis-Nicolas AU - Dahan-Oliel, Noémi PY - 2021/7/6 TI - Using Telerehabilitation to Deliver a Home Exercise Program to Youth With Arthrogryposis: Single Cohort Pilot Study JO - J Med Internet Res SP - e27064 VL - 23 IS - 7 KW - telerehabilitation KW - teleassessment KW - arthrogryposis multiplex congenita KW - physical therapy KW - occupational therapy N2 - Background: Arthrogryposis multiplex congenita (AMC) is characterized by joint contractures and muscle weakness, which limit daily activities. Youths with AMC require frequent physical therapeutic follow-ups to limit the recurrence of contractures and maintain range of motion (ROM) and muscle strength; however, access to specialized care may be limited because of geographical distance. Telerehabilitation can offer a potential solution for delivering frequent follow-ups for youth with AMC, but research on the use of telerehabilitation in children with musculoskeletal disorders is scarce. Objective: The study aims to evaluate the feasibility of delivering a home exercise program (HEP) by using telerehabilitation for youth with AMC. We also aim to explore the effectiveness of the HEP as a secondary aim. Methods: Youths aged between 8 and 21 years with AMC were recruited at the Shriners Hospitals for Children?Canada. The participants completed baseline and post-HEP questionnaires (the Physical Activity Questionnaire for Adolescents, Pediatrics Outcomes Data Collection Instrument, and Adolescent and Pediatric Pain Tool), and clinicians assessed their active ROM using a virtual goniometer. Clinicians used the Goal Attainment Scale with the participants to identify individualized goals to develop a 12-week HEP and assess the achievement of these goals. Follow-ups were conducted every 3 weeks to adjust the HEP. Data on withdrawal rates and compliance to the HEP and follow-ups were collected to assess the feasibility of this approach. The interrater reliability of using a virtual goniometer was assessed using the intraclass correlation coefficient and associated 95% CI. Nonparametric tests were used to evaluate feasibility and explore the effectiveness of the HEP. Results: Of the 11 youths who were recruited, 7 (median age: 16.9 years) completed the HEP. Of the 47 appointments scheduled, 5 had to be rescheduled in ?24 hours. The participants performed their HEP 2.04 times per week (95% CI 1.25-4.08) and reported good satisfaction with the approach. A general intraclass correlation coefficient of 0.985 (95% CI 0.980-0.989) was found for the web-based ROM measurement. Individualized goals were related to pain management; endurance in writing, standing, or walking; sports; and daily activities. In total, 12 of the 15 goals set with the participants were achieved. Statistically significant improvements were observed in the pain and comfort domain of the Pediatrics Outcomes Data Collection Instrument (preintervention: median 71; 95% CI 34-100; postintervention: median 85; 95% CI 49-100; P=.08) and Physical Activity Questionnaire for Adolescents (preintervention: median 1.62; 95% CI 1.00-2.82; postintervention: median 2.32; 95% CI 1.00-3.45; P=.046). Conclusions: The remote delivery of an HEP for youth with AMC is feasible. Promising results were found for the effectiveness of the HEP in helping youths with AMC to achieve their goals. The next step will be to assess the effectiveness of this exercise intervention in a randomized controlled trial. International Registered Report Identifier (IRRID): RR2-10.2196/18688 UR - https://www.jmir.org/2021/7/e27064 UR - http://dx.doi.org/10.2196/27064 UR - http://www.ncbi.nlm.nih.gov/pubmed/34255680 ID - info:doi/10.2196/27064 ER - TY - JOUR AU - Kim, Heon Ho AU - An, Il Jae AU - Park, Rang Yu PY - 2021/6/4 TI - A Prediction Model for Detecting Developmental Disabilities in Preschool-Age Children Through Digital Biomarker-Driven Deep Learning in Serious Games: Development Study JO - JMIR Serious Games SP - e23130 VL - 9 IS - 2 KW - developmental delay KW - diagnosis prediction KW - deep learning KW - serious games KW - digital health KW - digital phenotyping KW - digital biomarkers N2 - Background: Early detection of developmental disabilities in children is essential because early intervention can improve the prognosis of children. Meanwhile, a growing body of evidence has indicated a relationship between developmental disability and motor skill, and thus, motor skill is considered in the early diagnosis of developmental disability. However, there are challenges to assessing motor skill in the diagnosis of developmental disorder, such as a lack of specialists and time constraints, and thus it is commonly conducted through informal questions or surveys to parents. Objective: This study sought to evaluate the possibility of using drag-and-drop data as a digital biomarker and to develop a classification model based on drag-and-drop data with which to classify children with developmental disabilities. Methods: We collected drag-and-drop data from children with typical development and developmental disabilities from May 1, 2018, to May 1, 2020, via a mobile application (DoBrain). We used touch coordinates and extracted kinetic variables from these coordinates. A deep learning algorithm was developed to predict potential development disabilities in children. For interpretability of the model results, we identified which coordinates contributed to the classification results by applying gradient-weighted class activation mapping. Results: Of the 370 children in the study, 223 had typical development, and 147 had developmental disabilities. In all games, the number of changes in the acceleration sign based on the direction of progress both in the x- and y-axes showed significant differences between the 2 groups (P<.001; effect size >0.5). The deep learning convolutional neural network model showed that drag-and-drop data can help diagnose developmental disabilities, with an area under the receiving operating characteristics curve of 0.817. A gradient class activation map, which can interpret the results of a deep learning model, was visualized with the game results for specific children. Conclusions: Through the results of the deep learning model, we confirmed that drag-and-drop data can be a new digital biomarker for the diagnosis of developmental disabilities. UR - https://games.jmir.org/2021/2/e23130 UR - http://dx.doi.org/10.2196/23130 UR - http://www.ncbi.nlm.nih.gov/pubmed/34085944 ID - info:doi/10.2196/23130 ER - TY - JOUR AU - Kanitkar, Anuprita AU - Parmar, Tejraj Sanjay AU - Szturm, J. Tony AU - Restall, Gayle AU - Rempel, Gina AU - Sepehri, Nariman PY - 2021/5/31 TI - Parents' Perspectives on a Computer Game?Assisted Rehabilitation Program for Manual Dexterity in Children With Cerebral Palsy: Qualitative Analysis of Expectations, Child Engagement, and Benefits JO - JMIR Rehabil Assist Technol SP - e24337 VL - 8 IS - 2 KW - cerebral palsy KW - parents' expectations KW - fine motor function KW - object manipulation KW - computer game?based treatment protocol KW - parents KW - motor function KW - computer games, rehabilitation KW - game-based rehabilitation KW - gross movement KW - children N2 - Background: Children with motor impairments affecting the upper extremity benefit from task-specific therapy, such as constraint-induced movement therapy. However, there is a need to improve engagement and compliance with task-specific exercise programs that target manual dexterity for children with cerebral palsy (CP). A computer game?based rehabilitation (GRP) platform was developed that combines fine manipulation and gross movement exercises with engaging game activities appropriate for young children with CP. Objective: The objectives of this qualitative analysis were to compare parents? perspectives and opinions about expectations, challenges, and benefits between 2 interventions. Methods: A mixed methods, randomized controlled trial (RCT) was conducted to examine the feasibility and estimate the effect size of 2 exercise programs for rehabilitation of manual dexterity of children with CP using either GRP or conventional therapy. Parents of 26 of the children who completed the GRP program (n=33) and parents of 15 of the children who completed the conventional therapy program (n=27) participated in the interviews. A general conductive approach was used to analyze the data recorded during the parents? interviews. Results: Five themes captured the range of the parent?s experiences, viewpoints, and ideas: (1) parents? expectations, (2) child?s engagement with therapy, (3) positive effects of the interventions, (4) challenges, and (5) improving the protocol. Conclusions: Parents from both groups recognized that their expectations related to improving children?s object handling and manipulation skills including participation in activities of daily life were addressed during the 16-week therapy program. Parents perceived a change in the children?s level of independence in their daily tasks at home, school, and leisure activities. Trial Registration: ClinicalTrials.gov NCT02728375; https://clinicaltrials.gov/ct2/show/NCT02728375 UR - https://rehab.jmir.org/2021/2/e24337 UR - http://dx.doi.org/10.2196/24337 UR - http://www.ncbi.nlm.nih.gov/pubmed/34057424 ID - info:doi/10.2196/24337 ER - TY - JOUR AU - Lindsay, Sally AU - Kosareva, Polina AU - Sukhai, Mahadeo AU - Thomson, Nicole AU - Stinson, Jennifer PY - 2021/1/11 TI - Online Self-Determination Toolkit for Youth With Disabilities: Protocol for a Mixed Methods Evaluation Study JO - JMIR Res Protoc SP - e20463 VL - 10 IS - 1 KW - disability KW - involvement KW - occupational therapy KW - rehabilitation KW - youth N2 - Background: Youth with disabilities encounter many challenges during their transition to adulthood including finding employment. Jobs are often inaccessible, and youth often face a lack of support, discriminatory attitudes, and sometimes low self-confidence. Therefore, it is critical to help youth enhance their self-determination skills to advocate for their needs in the workplace. Objective: The aim of this paper is to describe how an online toolkit aimed to improve self-determination in advocating for needs, including disability disclosure and accommodation requests to employers, was co-created with youth with disabilities. Methods: We will use a mixed method design in which qualitative data (ie, focus groups and mentored discussion forum) are collected to understand the contextual factors during the intervention that could affect outcomes or explain results through the pre-post questionnaires. Fifty youths with disabilities aged 15 to 24 years will be recruited. Results: Data collection is in progress. Planned analyses include focus groups and pre-post surveys to determine the impact of the intervention on self-determination. A qualitative content analysis of the focus groups and all open-ended survey questions will be conducted to understand the impact of the toolkit. Conclusions: Our online toolkit includes evidence-informed content that was co-created with youth who have a disability. It has potential for educational and vocational programming for youth with disabilities. International Registered Report Identifier (IRRID): PRR1-10.2196/20463 UR - http://www.researchprotocols.org/2021/1/e20463/ UR - http://dx.doi.org/10.2196/20463 UR - http://www.ncbi.nlm.nih.gov/pubmed/33427688 ID - info:doi/10.2196/20463 ER - TY - JOUR AU - Buteau-Poulin, Anabel AU - Gosselin, Camille AU - Bergeron-Ouellet, Andréa AU - Kiss, Jocelyne AU - Lamontagne, Marie-Ève AU - Maltais, Désirée AU - Trottier, Christiane AU - Desmarais, Chantal PY - 2020/11/10 TI - Availability and Quality of Web Resources for Parents of Children With Disability: Content Analysis and Usability Study JO - JMIR Pediatr Parent SP - e19669 VL - 3 IS - 2 KW - disabled child KW - parents KW - health knowledge KW - internet-based intervention KW - validation study N2 - 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. UR - http://pediatrics.jmir.org/2020/2/e19669/ UR - http://dx.doi.org/10.2196/19669 UR - http://www.ncbi.nlm.nih.gov/pubmed/33170127 ID - info:doi/10.2196/19669 ER - TY - JOUR AU - Kelleher, F. Erin AU - Giampietro, F. Philip AU - Moreno, A. Megan PY - 2020/10/30 TI - Social Media Use Among Young Adults With Connective Tissue Disorders: Cross-Sectional Pilot Study JO - JMIR Pediatr Parent SP - e16367 VL - 3 IS - 2 KW - connective tissue disorders KW - social media KW - adolescents KW - young adults KW - Marfan syndrome KW - Ehlers-Danlos syndrome KW - Alport hereditary nephritis KW - Beals congenital contractual arachnodactyly KW - internet N2 - 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. UR - http://pediatrics.jmir.org/2020/2/e16367/ UR - http://dx.doi.org/10.2196/16367 UR - http://www.ncbi.nlm.nih.gov/pubmed/33124992 ID - info:doi/10.2196/16367 ER - TY - JOUR AU - Sezgin, Emre AU - Noritz, Garey AU - Hoffman, Jeffrey AU - Huang, Yungui PY - 2020/10/14 TI - A Medical Translation Assistant for Non?English-Speaking Caregivers of Children With Special Health Care Needs: Proposal for a Scalable and Interoperable Mobile App JO - JMIR Res Protoc SP - e21038 VL - 9 IS - 10 KW - medical translation KW - mobile app KW - special health care needs KW - pediatrics KW - caregiver-provider communication N2 - Background: Communication and comprehension of medical information are known barriers in health communication and equity, especially for non?English-speaking caregivers of children with special health care needs. Objective: The objective of this proposal was to develop an interoperable and scalable medical translation app for non?English-speaking caregivers to facilitate the conversation between provider and caregiver/patient. Methods: We employed user-centered and participatory design methods to understand the problems and develop a solution by engaging the stakeholder team (including caregivers, physicians, researchers, clinical informaticists, nurses, developers, nutritionists, pharmacists, and interpreters) and non?English-speaking caregiver participants. Results: Considering the lack of interpreter service accessibility and advancement in translation technology, our team will develop and test an integrated, multimodal (voice-interactive and text-based) patient portal communication and translation app to enable non?English-speaking caregivers to communicate with providers using their preferred languages. For this initial prototype, we will focus on the Spanish language and Spanish-speaking families to test technical feasibility and evaluate usability. Conclusions: Our proposal brings a unique perspective to medical translation and communication between caregiver and provider by (1) enabling voice entry and transcription in health care communications, (2) integrating with patient portals to facilitate caregiver and provider communications, and (3) adopting a translation verification model to improve accuracy of artificial intelligence?facilitated translations. Expected outcomes include improved health communications, literacy, and health equity. In addition, data points will be collected to improve autotranslation services in medical communications. We believe our proposed solution is affordable, interoperable, and scalable for health systems. UR - http://www.researchprotocols.org/2020/10/e21038/ UR - http://dx.doi.org/10.2196/21038 UR - http://www.ncbi.nlm.nih.gov/pubmed/33051177 ID - info:doi/10.2196/21038 ER - TY - JOUR AU - Rabba, Stacey Aspasia AU - Dissanayake, Cheryl AU - Barbaro, Josephine PY - 2020/9/30 TI - Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design JO - JMIR Pediatr Parent SP - e15786 VL - 3 IS - 2 KW - autism KW - diagnosis KW - parents KW - support KW - co-design KW - eHealth N2 - 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. UR - http://pediatrics.jmir.org/2020/2/e15786/ UR - http://dx.doi.org/10.2196/15786 UR - http://www.ncbi.nlm.nih.gov/pubmed/32996890 ID - info:doi/10.2196/15786 ER - TY - JOUR AU - Siedlikowski, Maia AU - Rauch, Frank AU - Tsimicalis, Argerie PY - 2020/9/22 TI - Giving Children With Osteogenesis Imperfecta a Voice: Participatory Approach for the Development of the Interactive Assessment and Communication Tool Sisom OI JO - J Med Internet Res SP - e17947 VL - 22 IS - 9 KW - child health KW - symptom assessment, communication, mobile apps, software N2 - Background: Children with osteogenesis imperfecta (OI) experience acute and chronic symptoms that expose them to physical, mental, and social challenges. Empowering these children by involving them in their care can help them to cope with OI. Sisom is an interactive assessment and communication tool designed to help children aged 6-12 years with chronic illnesses express their symptoms. This tool has not yet been adapted to the unique needs of OI. Objective: The aim of this study was to develop a Sisom OI paper prototype by seeking the perspectives of end users. Methods: A participatory approach was adopted to develop the prototype overseen by an expert panel of 9 clinicians at a university-affiliated pediatric hospital. Purposive sampling was used to recruit 12 children with OI who were aged 6-12 years. The study was carried out over the course of 3 feedback cycles. Data were deductively interpreted using content analysis techniques. Results: Overall, 64% (57/89) of the Sisom symptoms were deemed relevant for inclusion in Sisom OI, with 42% (37/89) directly incorporated and 22% (20/89) incorporated with changes. In total, 114 symptoms were used to create the prototype, of which 57 were newly generated. The relevant symptoms addressed children?s thoughts and feelings about hospitalization and their wishes for participation in their own care. The new symptoms addressed fractures, body image, and social isolation related to difficulties with accessibility and intimidation. Conclusions: Once developed, Sisom OI will offer clinicians an innovative and child-centered approach to capture children?s perspectives on their condition. UR - http://www.jmir.org/2020/9/e17947/ UR - http://dx.doi.org/10.2196/17947 UR - http://www.ncbi.nlm.nih.gov/pubmed/32960176 ID - info:doi/10.2196/17947 ER - TY - JOUR AU - Lai, Byron AU - Davis, Drew AU - Narasaki-Jara, Mai AU - Hopson, Betsy AU - Powell, Danielle AU - Gowey, Marissa AU - Rocque, G. Brandon AU - Rimmer, H. James PY - 2020/9/3 TI - Feasibility of a Commercially Available Virtual Reality System to Achieve Exercise Guidelines in Youth With Spina Bifida: Mixed Methods Case Study JO - JMIR Serious Games SP - e20667 VL - 8 IS - 3 KW - physical activity KW - active video gaming KW - exergaming KW - disability KW - Oculus Quest N2 - Background: Access to physical activity among youth with spina bifida (SB) is much lower than it is for children without disability. Enjoyable home-based exercise programs are greatly needed. Objective: Our objective is to examine the feasibility of a virtual reality (VR) active video gaming system (ie, bundle of consumer-available equipment) to meet US physical activity guidelines in two youth with SB. Methods: Two youth with SB?a 12-year-old female and a 13-year-old male; both full-time wheelchair users?participated in a brief, 4-week exercise program using a popular VR head-mounted display: Oculus Quest (Facebook Technologies). The system included a Polar H10 (Polar Canada) Bluetooth heart rate monitor, a no-cost mobile phone app (VR Health Exercise Tracker [Virtual Reality Institute of Health and Exercise]), and 13 games. The intervention protocol was conducted entirely in the homes of the participants due to the coronavirus disease 2019 (COVID-19) pandemic. The VR system was shipped to participants and they were instructed to do their best to complete 60 minutes of moderate-intensity VR exercise per day. Exercise duration, intensity, and calories expended were objectively monitored and recorded during exercise using the heart rate monitor and a mobile app. Fatigue and depression were measured via self-report questionnaires at pre- and postintervention. Participants underwent a semistructured interview with research staff at postintervention. Results: Across the intervention period, the total average minutes of all exercise performed each week for participants 1 and 2 were 281 (SD 93) and 262 (SD 55) minutes, respectively. The total average minutes of moderate-intensity exercise performed per week for participants 1 and 2 were 184 (SD 103) (184/281, 65.4%) and 215 (SD 90) (215/262, 82.1%) minutes, respectively. One participant had a reduction in their depression score, using the Quality of Life in Neurological Disorders (Neuro-QoL) test, from baseline to postintervention, but no other changes were observed for fatigue and depression scores. Participants reported that the amount of exercise they completed was far higher than what was objectively recorded, due to usability issues with the chest-worn heart rate monitor. Participants noted that they were motivated to exercise due to the enjoyment of the games and VR headset as well as support from a caregiver. Conclusions: This study demonstrated that two youth with SB who used wheelchairs could use a VR system to independently and safely achieve exercise guidelines at home. Study findings identified a promising protocol for promoting exercise in this population and this warrants further examination in future studies with larger samples. UR - http://games.jmir.org/2020/3/e20667/ UR - http://dx.doi.org/10.2196/20667 UR - http://www.ncbi.nlm.nih.gov/pubmed/32880577 ID - info:doi/10.2196/20667 ER - TY - JOUR AU - Mohsen, Hanaa AU - Samy, Omnya PY - 2020/7/21 TI - Effect of Platform Swing Walkway on Locomotor Behavior in Children With Diplegic Cerebral Palsy: Randomized Controlled Trial JO - JMIR Biomed Eng SP - e18232 VL - 5 IS - 1 KW - cerebral palsy KW - platform swing walkway KW - spastic diplegia N2 - Background: Limited attention has been given to the effectiveness of the platform swing walkway, which is a common way to improve gait pattern through activation of sensory stimuli (visual, auditory, vestibular, and somatosensory). Objective: The objective of this study was to determine the effect of a platform swing walkway on gait parameters in children with diplegic cerebral palsy (CP). Methods: A total of 30 children of both sexes (aged 6-8 years) with diplegic CP were enrolled in this study. They were randomly assigned into two groups of equal number: the control group (n=15) and the study group (n=15). The control group received the conventional physical therapy plan, whereas the study group received the same conventional physical therapy program in addition to gait training on a platform swing walkway. Temporal parameters during the gait cycle were collected using gait tracker video analysis, and the Growth Motor Function Measure Scale (GMFM-88) was used to assess standing and walking (Dimensions D and E) before and after the treatment program. Results: A statistically significant improvement in both groups was noted when comparing the mean values of all measured variables before and after treatment (P?.05). There were significant differences between the control and study groups with respect to all measured variables, which favored the study group when comparing the posttreatment outcomes (P?.05). Conclusions: Results suggest that gait training on platform swing walkways can be included as an alternative therapeutic modality to enhance gait parameters and gross motor function in children with diplegic CP. Trial Registration: ClinicalTrials.gov NTC04246658; https://clinicaltrials.gov/ct2/show/NTC04246658 UR - http://biomedeng.jmir.org/2020/1/e18232/ UR - http://dx.doi.org/10.2196/18232 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/18232 ER - TY - JOUR AU - DeForte, Shelly AU - Sezgin, Emre AU - Huefner, Janelle AU - Lucius, Shana AU - Luna, John AU - Satyapriya, A. Anand AU - Malhotra, Prashant PY - 2020/5/28 TI - Usability of a Mobile App for Improving Literacy in Children With Hearing Impairment: Focus Group Study JO - JMIR Hum Factors SP - e16310 VL - 7 IS - 2 KW - hearing aids KW - focus groups KW - cochlear implants KW - literacy KW - reading KW - hearing loss KW - hearing impairment KW - mobile applications KW - qualitative study KW - usability KW - aural rehabilitation N2 - Background: Children with hearing loss, even those identified early and who use hearing aids or cochlear implants, may face challenges in developing spoken language and literacy. This can lead to academic, behavioral, and social difficulties. There are apps for healthy children to improve their spoken language and literacy and apps that focus on sign language proficiency for children with hearing loss, but these apps are limited for children with hearing loss. Therefore, we have developed an app called Hear Me Read, which uses enhanced digital stories as therapy tools for speech, language, and literacy for children with hearing loss. The platform has therapist and parent/child modes that allow (1) the selection of high-quality, illustrated digital stories by a speech-language pathologist, parent, or child; (2) the modification of digital stories for a multitude of speech and language targets; and (3) the assignment of stories by a therapist to facilitate individualized speech and language goals. In addition, Hear Me Read makes the caregiver a core partner in engagement through functionality, whereby the caregiver can record video and audio of themselves to be played back by the child. Objective: This study aimed to evaluate the user experience of the Hear Me Read app through a focus group study with caregivers and their children. Methods: We recruited 16 participants (8 children with and without hearing loss and 8 caregivers) to participate in 1-hour focus groups. Caregivers and children interacted with the app and discussed their experiences through a semistructured group interview. We employed thematic analysis methods and analyzed the data. We used feedback from the focus group to improve the elements of the app for a larger clinical trial assessing the impact of the app on outcomes. Results: We identified three themes: default needs, specific needs, and family needs. Participants found the app to be esthetically pleasing and easy to use. The findings of this study helped us to identify usability attributes and to amend app functionalities to best fit user needs. Caregivers and children appreciated the enhancements, such as highlighting of parts of speech and caregiver reading of video playback, which were made possible by the digital format. Participants expressed that the app could be used to enhance family reading sessions and family interaction. Conclusions: The findings from this focus group study are promising for the use of educational apps designed specifically for those with hearing loss who are pursuing listening and spoken language as a communication outcome. Further investigation is needed with larger sample sizes to understand the clinical impact on relevant language and literacy outcomes in this population. UR - http://humanfactors.jmir.org/2020/2/e16310/ UR - http://dx.doi.org/10.2196/16310 UR - http://www.ncbi.nlm.nih.gov/pubmed/32205305 ID - info:doi/10.2196/16310 ER - TY - JOUR AU - Su, Jiunn-Yih AU - He, Yaofeng Vincent AU - Guthridge, Steven AU - Silburn, Sven PY - 2020/1/15 TI - The Impact of Hearing Impairment on the Life Trajectories of Aboriginal Children in Remote Australia: Protocol for the Hearing Loss in Kids Project JO - JMIR Res Protoc SP - e15464 VL - 9 IS - 1 KW - data linkage KW - hearing impairment KW - indigenous population KW - child development KW - primary schools KW - academic achievement KW - child maltreatment KW - juvenile delinquency N2 - Background: Previous studies have reported a high prevalence of chronic otitis media (OM) and hearing impairment (HI) in Aboriginal children in the Northern Territory (NT) of Australia. Children affected by these disorders are believed to be at increased risk for adverse outcomes in early childhood development, school attendance, academic performance, and child maltreatment and youth offending. However, to date, there have been no studies quantifying the association between HI and these outcomes in this population. Objective: This study will investigate the association between HI and the 5 outcomes in Aboriginal children living in remote NT communities. Methods: Individual-level information linked across multiple administrative datasets will be used to conduct a series of retrospective observational studies on selected developmental and school outcomes. The predictor variables for all studies are the results from audiometric hearing assessments. The outcome measures are as follows: Australian Early Development Census results, representing developmental readiness for school, assessed around 5 years of age; Year 1 school attendance rates; Year 3 school-based academic performance, assessed in the National Assessment Program?Literacy and Numeracy; incidence of child maltreatment events (including both notifications and substantiated cases); and incidence of a first guilty verdict for youth offenders. Confounding and moderating factors available for the analysis include both community-level factors (including school fixed effects, socioeconomic status, level of remoteness, and housing crowdedness) and individual-level factors (including maternal and perinatal health and hospital admissions in early childhood). Results: The study commenced in 2018, with ethics and data custodian approvals for data access and linkage. This has enabled the completion of data linkage and the commencement of data analysis for individual component studies, with findings expected to be published in 2019 and 2020. Conclusions: This study will provide first evidence of the impact of OM-related HI on the developmental, educational, and social outcomes of Australian Aboriginal children. The findings are expected to have significant implications for policy development, service design, and resource allocation. International Registered Report Identifier (IRRID): RR1-10.2196/15464 UR - https://www.researchprotocols.org/2020/1/e15464 UR - http://dx.doi.org/10.2196/15464 UR - http://www.ncbi.nlm.nih.gov/pubmed/31939348 ID - info:doi/10.2196/15464 ER - TY - JOUR AU - Lindsay, Sally AU - Cagliostro, Elaine PY - 2020/1/8 TI - A Web-Based Intervention for Youth With Physical Disabilities: Comparing the Role of Mentors in 12- and 4-Week Formats JO - JMIR Pediatr Parent SP - e15813 VL - 3 IS - 1 KW - social support KW - mentor KW - youth KW - adolescent KW - employment N2 - Background: Youths with physical disabilities face many barriers in society, including social exclusion, stigma, and difficulties finding employment. Electronic mentoring (e-mentoring) offers a promising opportunity for youths with disabilities and has the potential to improve their inclusion while enhancing career outcomes. However, little is known about the role of mentors in a Web-based e-mentoring format to improve employment outcomes. Objective: This study aimed to explore the role of mentors in engaging youths in an e-mentoring intervention and to compare and contrast mentors? engagement strategies within a 12- and 4-week format. Methods: This paper drew on a pilot feasibility study, which is a group, Web-based employment readiness intervention involving a discussion forum for youths with physical disabilities. 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 completed over both a 12- or 4-week format. We used a mixed method approach including qualitative data (mentor interviews and discussion forum data) and quantitative data (pre-post survey data) comparison. Results: A total of 24 youths participated across 3 e-mentoring intervention groups: 9 in the 12-week format (mean age 17.7 years [SD 1.7]) and 15 in the 4-week format (mean age 19.5 years [SD 2.6]), led by 3 trained youth mentors with disabilities, 2 males and 1 female (mean age 22 years [SD 2.64]). Our findings revealed that mentors engaged youths in the e-mentoring program by providing informational, emotional, and tangible support. We noted more instances of mentors providing advice, empathy, and encouragement in the 12-week format compared with the 4-week format. We also found fewer examples of providing advice, developing a rapport, and social support from mentors in the 4-week format. Our findings revealed no significant differences between the 2 groups regarding time spent in the forum, number of logins, number of posts, and self-rated engagement. Conclusions: Mentors in the 12-week and 4-week format engaged participants differently in providing informational and emotional support, although there were no differences in tangible support provided. Mentors reported that the 12-week format was too long and lacked interaction between participants, whereas the 4-week format felt rushed and had fewer detailed responses from mentees. International Registered Report Identifier (IRRID): RR2-10.2196/resprot.8034 UR - https://pediatrics.jmir.org/2020/1/e15813 UR - http://dx.doi.org/10.2196/15813 UR - http://www.ncbi.nlm.nih.gov/pubmed/31913132 ID - info:doi/10.2196/15813 ER - TY - JOUR AU - Castro, R. Aimee AU - Chougui, Khadidja AU - Bilodeau, Claudette AU - Tsimicalis, Argerie PY - 2019/12/18 TI - Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study JO - J Med Internet Res SP - e15924 VL - 21 IS - 12 KW - smartphone KW - caregivers KW - pediatrics KW - rare diseases KW - telemedicine KW - quality improvement KW - social media KW - chronic disease KW - osteogenesis imperfecta N2 - Background: Osteogenesis imperfecta (OI) is a rare genetic condition that can lead to frequent debilitating bone fractures. Family caregivers of children with OI face unique challenges in providing care, which may include limited access to information about the condition, feelings of distress, and experiences of social isolation. Internet-based technologies (IBTs) have been useful for supporting other types of caregivers. However, the views of OI caregivers on IBTs have not been explored. Objective: This study aimed to explore the views of OI caregivers on the uses of IBTs to support them in caring for their children with OI. Methods: A qualitative descriptive study was conducted. Caregivers of children with OI were recruited at a pediatric hospital in Montreal, Canada. Interviews were used to explore each caregiver?s views on the applicability of IBTs in supporting their caregiving needs. The interviews were transcribed verbatim and thematically analyzed. Results: A total of 18 caregivers participated. The caregivers shared that IBTs were useful for facilitating the following activities: daily activities of caregiving (such as providing physical care, supporting relationships, supporting self-care and hope, and managing the logistics of caregiving), OI medical information seeking, and OI social networking. However, they also revealed concerns about the health consequences of IBT use and the quality of IBT content. Concerns regarding IBTs varied somewhat with caregivers? geographies. Caregivers offered suggestions and strategies for how IBTs can be optimized for caregiving. Conclusions: Family caregivers of children with OI face unique challenges in providing care, which may include lacking access to information about the rare condition and feeling socially isolated. OI caregivers use IBTs to overcome some of these challenges and to support their specific caregiving needs. These findings contribute to the paucity of knowledge by offering varied IBT strategies to support caregiving activities, which may be beneficial for other caregivers. Participants? suggestions for IBT services can inform the development of new resources for OI caregivers and potentially for other caregivers of children living with rare conditions. UR - http://www.jmir.org/2019/12/e15924/ UR - http://dx.doi.org/10.2196/15924 UR - http://www.ncbi.nlm.nih.gov/pubmed/31850851 ID - info:doi/10.2196/15924 ER - TY - JOUR AU - Sinclair, Marlene AU - McCullough, EM Julie AU - Elliott, David AU - Latos-Bielenska, Anna AU - Braz, Paula AU - Cavero-Carbonell, Clara AU - Jamry-Dziurla, Anna AU - João Santos, Ana AU - Páramo-Rodríguez, Lucía PY - 2019/11/25 TI - Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, or Spina Bifida Using ConnectEpeople: A Social Media Coproduction Research Study JO - J Med Internet Res SP - e15847 VL - 21 IS - 11 KW - e-forum KW - social media KW - Web-based survey KW - Facebook KW - STAI KW - Down syndrome KW - cleft lip with or without cleft palate KW - congenital heart defects KW - spina bifida KW - parents KW - ocularcentrism KW - coproduction N2 - Background: Using social media for research purposes is novel and challenging in terms of recruitment, participant knowledge about the research process, and ethical issues. This paper provides insight into the recruitment of European parents of children with specific congenital anomalies to engage in coproduction research by using social media. Secret Facebook groups, providing optimal security, were set up for newly recruited research-aware parents (RAPs) to communicate privately and confidentially with each other and for the research team to generate questions and to interpret findings. Objective: This study aimed to use social media for the recruitment and engagement of parents in research and to determine the research priorities of parents who have children with Down syndrome, cleft lip with or without cleft palate, congenital heart defects, and spina bifida. Methods: The design was exploratory and descriptive with 3 phases. Phase 1 included the recruitment of RAPs and generation of research questions important to them; phase 2 was a Web-based survey, designed using Qualtrics software, and phase 3 included analysis and ranking of the top 10 research questions using an adapted James Lind Alliance approach. Simple descriptive statistics were used for analysis, and ethical approval was obtained from the Ethics Filter Committee of the Institute of Nursing and Health Research, Ulster University. Results: The recruitment of 32 RAPs was a sensitive process, varying in the time taken to consent (mean 51 days). However, parents valued the screening approach using the State-Trait Anxiety Inventory as a measure to ensure their well-being (mean 32.5). In phase 1, RAPs generated 98 research questions. In phase 2, 251 respondents accessed the Web-based survey, 248 consented, and 80 completed the survey, giving a completeness rate of 32.3% (80/248). Most parents used social media (74/80, 92%). Social media, online forums, and meeting in person were ranked the most preferable methods for communication with support groups networks and charities. Most respondents stated that they had a good understanding of research reports (71/80, 89%) and statistics (68/80, 85%) and could differentiate among the different types of research methodologies (62/80, 78%). Phase 3 demonstrated consensus among RAPs and survey respondents, with a need to know the facts about their child?s condition, future health, and psychosocial and educational outcomes for children with similar issues. Conclusions: Social media is a valuable facilitator in the coproduction of research between parents and researchers. From a theoretical perspective, ocularcentrism can be an applicable frame of reference for understanding how people favor visual contact. UR - http://www.jmir.org/2019/11/e15847/ UR - http://dx.doi.org/10.2196/15847 UR - http://www.ncbi.nlm.nih.gov/pubmed/31763986 ID - info:doi/10.2196/15847 ER - TY - JOUR AU - Williamson, Heidi AU - Hamlet, Claire AU - White, Paul AU - Marques, R. Elsa M. AU - Paling, Thomas AU - Cadogan, Julia AU - Perera, Rohan AU - Rumsey, Nichola AU - Hayward, Leighton AU - Harcourt, Diana PY - 2019/11/22 TI - A Web-Based Self-Help Psychosocial Intervention for Adolescents Distressed by Appearance-Affecting Conditions and Injuries (Young Persons? Face IT): Feasibility Study for a Parallel Randomized Controlled Trial JO - JMIR Ment Health SP - e14776 VL - 6 IS - 11 KW - physical appearance, body image, disfigurement KW - visible difference KW - adolescents KW - young people KW - psychological support KW - online intervention. N2 - Background: Disfigurement (visible difference) from wide-ranging congenital or acquired conditions, injuries, or treatments can negatively impact adolescents? psychological well-being, education and health behaviours. Alongside medical interventions, appearance-specific cognitive behavioural and social skills training to manage stigma and appearance anxiety may improve psychosocial outcomes. YP Face IT (YPF), is a Web-based seven session self-help program plus booster quiz, utilising cognitive behavioural and social skills training for young people (YP) struggling with a visible difference. Co-designed by adolescents and psychologists, it includes interactive multimedia and automated reminders to complete sessions/homework. Adolescents access YPF via a health professional who determines its suitability and remotely monitors clients? usage. Objective: To establish the feasibility of evaluating YPF for 12-17 year olds self-reporting appearance-related distress and/or bullying associated with a visible difference. Methods: Randomized controlled trial with nested qualitative and economic study evaluating YPF compared with usual care (UC). Feasibility outcomes included: viability of recruiting via general practitioner (GP) practices (face to face and via patient databases) and charity advertisements; intervention acceptability and adherence; feasibility of study and data collection methods; and health professionals? ability to monitor users? online data for safeguarding issues. Primary psychosocial self-reported outcomes collected online at baseline, 13, 26, and 52 weeks were as follows: appearance satisfaction (Appearance Subscale from Mendleson et al?s (2001) Body Esteem Scale); social anxiety (La Greca?s (1999) Social Anxiety Scale for Adolescents). Secondary outcomes were; self-esteem; romantic concerns; perceived stigmatization; social skills and healthcare usage. Participants were randomised using remote Web-based allocation. Results: Thirteen charities advertised the study yielding 11 recruits, 13 primary care practices sent 687 invitations to patients on their databases with a known visible difference yielding 17 recruits (2.5% response rate), 4 recruits came from GP consultations. Recruitment was challenging, therefore four additional practices mass-mailed 3,306 generic invitations to all 12-17 year old patients yielding a further 15 participants (0.5% response rate). Forty-seven YP with a range of socioeconomic backgrounds and conditions were randomised (26% male, 91% white, mean age 14 years (SD 1.7)); 23 to YPF, 24 to UC). At 52 weeks, 16 (70%) in the intervention and 20 (83%) in UC groups completed assessments. There were no intervention-related adverse events; most found YPF acceptable with three withdrawing because they judged it was for higher-level concerns; 12 (52%) completed seven sessions. The study design was acceptable and feasible, with multiple recruitment strategies. Preliminary findings indicate no changes from baseline in outcome measures among the UC group and positive changes in appearance satisfaction and fear of negative evaluation among the YPF group when factoring in baseline scores and intervention adherence. Conclusions: YPF is novel, safe and potentially helpful. Its full psychosocial benefits should be evaluated in a large-scale RCT, which would be feasible with wide-ranging recruitment strategies. Trial Registration: ISRCTN registry ISRCTN40650639; http://www.isrctn.com/ISRCTN40650639 UR - http://mental.jmir.org/2019/11/e14776/ UR - http://dx.doi.org/10.2196/14776 UR - http://www.ncbi.nlm.nih.gov/pubmed/31755870 ID - info:doi/10.2196/14776 ER - TY - JOUR AU - Bang, Changbae AU - Nam, Yelin AU - Ko, Jae Eun AU - Lee, Wooseong AU - Kim, Byungjae AU - Choi, Yejin AU - Park, Rang Yu PY - 2019/10/24 TI - A Serious Game?Derived Index for Detecting Children With Heterogeneous Developmental Disabilities: Randomized Controlled Trial JO - JMIR Serious Games SP - e14924 VL - 7 IS - 4 KW - serious game KW - developmental disabilities KW - mobile game KW - cognitive screening tool KW - machine learning N2 - Background: Developmental disabilities are a set of heterogeneous delays or difficulties in one or more areas of neuropsychological development. Considering that childhood is an essential stage of brain development and developmental delays lead to personal or social burdens, the early detection of childhood developmental disabilities is important. However, early screening for developmental disabilities has been a challenge because of the fear of positive results, expensive tests, differences in diagnosis depending on examiners? abilities, and difficulty in diagnosis arising from the need for long-term follow-up observation. Objective: This study aimed to assess the feasibility of using a serious game?derived index to identify heterogeneous developmental disabilities. This study also examines the correlation between the game-derived index and existing neuropsychological test results. Methods: The randomized controlled trial involved 48 children with either normal development or developmental disabilities. In this clinical trial, we used 19 features (6 from the Korean-Wechsler Preschool and Primary Scale of Intelligence, 8 from the Psychoeducational Profile Revised, 2 from the Bruininks-Oseretsky Test of Motor Proficiency, Second Edition, and 3 from the Pediatric Evaluation of Disability Inventory) from neuropsychological tests and 9 (7 game scores, path accuracy, and completion rate) from the serious game, DoBrain. The following analysis was conducted based on participants? baseline information and neuropsychological test and game-derived index data for one week: (1) we compared the baseline information between the normal development and developmental disabilities groups; (2) then we measured the correlation between the game-derived index and the neuropsychological test scores for each group; and (3) we built a classifier based on the game-derived index with a Gaussian process method and then compared the area under the curve (AUC) with a model based on neuropsychological test results. Results: A total of 16 children (normal development=9; developmental disabilities=7) were analyzed after selection. Their developmental abilities were assessed before they started to play the serious games, and statistically significant differences were found in both groups. Specifically, the normal development group was more developed than the developmental disabilities group in terms of social function, gross motor function, full-scale IQ, and visual motor imitation, in that order. Similarly, the normal development group obtained a higher score on the game-derived index than the developmental disabilities group. In the correlation analysis between the game-derived index and the neuropsychological tests, the normal development group showed greater correlation with more variables than the developmental disabilities group. The game-derived index?based model had an AUC=0.9, a similar detection value as the neuropsychological test?based model?s AUC=0.86. Conclusions: A game-derived index based on serious games can detect children with heterogenous developmental disabilities. This suggests that serious games can be used as a potential screening tool for developmental disabilities. Trial Registration: Clinical Research Information Service KCT0003247; https://cris.nih.go.kr/cris/en/search/search_result_st01 .jsp?seq=12365 UR - http://games.jmir.org/2019/4/e14924/ UR - http://dx.doi.org/10.2196/14924 UR - http://www.ncbi.nlm.nih.gov/pubmed/31651408 ID - info:doi/10.2196/14924 ER - TY - JOUR AU - Stiles-Shields, Colleen AU - Garcia, Brittney AU - Villota, Kimberly AU - Wartman, Elicia AU - Winning, M. Adrien AU - Holmbeck, N. Grayson PY - 2019/10/10 TI - Exploring an Existing Weight Management App for Use With Adolescents and Young Adults With Spina Bifida: Usability Study JO - JMIR Pediatr Parent SP - e15153 VL - 2 IS - 2 KW - spina bifida occulta KW - mHealth KW - mobile apps KW - usability testing KW - adolescent KW - young adult KW - weight reduction programs KW - body weight maintenance N2 - Background: Adolescents and young adults with spina bifida (AYA-SBs) have unique user needs, given their variable and complex symptom profile. Owing to multiple barriers to prevention and intervention treatments for secondary conditions (eg, obesity), AYA-SBs may benefit from the use of behavioral intervention technologies (BITs). However, as BITs are often designed and tested with typically developing individuals, it is unclear if existing BITs may be usable for AYA-SBs. Objective: This study aimed to evaluate the usability of a high-quality, publicly available, weight management?focused mobile BIT (smartphone app) for AYA-SBs. Methods: Overall, 28 AYA-SBs attending a Young Men?s Christian Association?based summer camp completed 4 structured usability tasks using a weight management app designed for the general public called My Diet Coach (Bending Spoons). Learnability was measured by (1) time to complete task, (2) number of user errors, and (3) correct entry of data when requested by the app. Satisfaction and general usability were measured via self-reported questionnaires and qualitative feedback following interactions with the app. Results: The majority of the sample were able to complete the tasks, with increased completion rates and improved times on second attempts of the tasks (Ps<.05). Errors were common, and discrepancies emerged between quantitative and qualitative feedback such that self-reported measures indicated dissatisfaction but qualitative feedback was generally positive. Suggested improvements to the app included (1) tutorials, (2) simplifying the design, (3) more activity options for those who ambulate by wheelchair, and (4) notifications to prompt use. Conclusions: AYA-SBs were able to learn how to complete specific tasks independently on a weight management app, but design changes consistent with previously proposed user needs were recommended. Rather than designing entirely new BITs, it may be possible to adapt existing technologies to personalize BITs for specific populations such as AYA-SBs. UR - https://pediatrics.jmir.org/2019/2/e15153 UR - http://dx.doi.org/10.2196/15153 UR - http://www.ncbi.nlm.nih.gov/pubmed/31603432 ID - info:doi/10.2196/15153 ER - TY - JOUR AU - Lindsay, Sally AU - Cagliostro, Elaine AU - Stinson, Jennifer AU - Leck, Joanne PY - 2019/04/24 TI - A 4-Week Electronic-Mentoring Employment Intervention for Youth With Physical Disabilities: Pilot Randomized Controlled Trial JO - JMIR Pediatr Parent SP - e12653 VL - 2 IS - 1 KW - social support KW - mentor KW - youth KW - rehabilitation KW - occupational therapy N2 - 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). Objective: The objective of this study was to assess the feasibility of a 4-week Web-based peer e-mentoring employment intervention for youth with physical disabilities. 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. Trial Registration: ClinicalTrials.gov NCT02522507; https://clinicaltrials.gov/ct2/show/NCT02522507 (Archived by WebCite at http://www.webcitation.org/77a3T4qrE) UR - http://pediatrics.jmir.org/2019/1/e12653/ UR - http://dx.doi.org/10.2196/12653 UR - http://www.ncbi.nlm.nih.gov/pubmed/31518302 ID - info:doi/10.2196/12653 ER - TY - JOUR AU - Chu, Yuan-Chia AU - Cheng, Yen-Fu AU - Lai, Ying-Hui AU - Tsao, Yu AU - Tu, Tzong-Yang AU - Young, Tsong Shuenn AU - Chen, Tzer-Shyong AU - Chung, Yu-Fang AU - Lai, Feipei AU - Liao, Wen-Huei PY - 2019/04/01 TI - A Mobile Phone?Based Approach for Hearing Screening of School-Age Children: Cross-Sectional Validation Study JO - JMIR Mhealth Uhealth SP - e12033 VL - 7 IS - 4 KW - hearing tests KW - telemedicine KW - mobile apps KW - audiometry, pure-tone N2 - Background: Pure-tone screening (PTS) is considered as the gold standard for hearing screening programs in school-age children. Mobile devices, such as mobile phones, have the potential for audiometric testing. Objective: This study aimed to demonstrate a new approach to rapidly screen hearing status and provide stratified test values, using a smartphone-based hearing screening app, for each screened ear of school-age children. Method: This was a prospective cohort study design. The proposed smartphone-based screening method and a standard sound-treated booth with PTS were used to assess 85 school-age children (170 ears). Sound-treated PTS involved applying 4 test tones to each tested ear: 500 Hz at 25 dB and 1000 Hz, 2000 Hz, and 4000 Hz at 20 dB. The results were classified as pass (normal hearing in the ear) or fail (possible hearing impairment). The proposed smartphone-based screening employs 20 stratified hearing scales. Thresholds were compared with those of pure-tone average (PTA). Results: A total of 85 subjects (170 ears), including 38 males and 47 females, aged between 11 and 12 years with a mean (SD) of 11 (0.5) years, participated in the trial. Both screening methods produced comparable pass and fail results (pass in 168 ears and fail in 2 ears). The smartphone-based screening detected moderate or worse hearing loss (average PTA>25 dB) accurately. Both the sensitivity and specificity of the smartphone-based screening method were calculated at 100%. Conclusions: The results of the proposed smartphone-based self-hearing test demonstrated high concordance with conventional PTS in a sound-treated booth. Our results suggested the potential use of the proposed smartphone-based hearing screening in a school-age population. UR - https://mhealth.jmir.org/2019/4/e12033/ UR - http://dx.doi.org/10.2196/12033 UR - http://www.ncbi.nlm.nih.gov/pubmed/30932870 ID - info:doi/10.2196/12033 ER - TY - JOUR AU - Lindsay, Sally AU - Cagliostro, Elaine AU - Leck, Joanne AU - Stinson, Jennifer PY - 2019/03/29 TI - A 12-Week Electronic Mentoring Employment Preparation Intervention for Youth With Physical Disabilities: Pilot Feasibility Randomized Controlled Trial JO - JMIR Pediatr Parent SP - e12088 VL - 2 IS - 1 KW - social support KW - mentor KW - employment KW - youth KW - disabled persons KW - rehabilitation KW - occupational therapy N2 - 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. Objective: This study aimed to assess the acceptability and initial impact of a Web-based peer electronic mentor employment intervention 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. Trial Registration: ClinicalTrials.gov NCT02522507; https://clinicaltrials.gov/ct2/show/NCT02522507 (Archived by WebCite at http://www.webcitation.org/6uD58Pvjc) International Registered Report Identifier (IRRID): RR2-10.2196/resprot.8034 UR - http://pediatrics.jmir.org/2019/1/e12088/ UR - http://dx.doi.org/10.2196/12088 UR - http://www.ncbi.nlm.nih.gov/pubmed/31518315 ID - info:doi/10.2196/12088 ER - TY - JOUR AU - Cross, Andrea AU - Rosenbaum, Peter AU - Grahovac, Danijela AU - Brocklehurst, Julie AU - Kay, Diane AU - Baptiste, Sue AU - Gorter, Willem Jan PY - 2018/12/21 TI - A Web-Based Knowledge Translation Resource for Families and Service Providers (The ?F-Words? in Childhood Disability Knowledge Hub): Developmental and Pilot Evaluation Study JO - JMIR Rehabil Assist Technol SP - e10439 VL - 5 IS - 2 KW - childhood disability KW - F-words KW - ICF KW - Knowledge Hub KW - knowledge-to-action framework KW - knowledge translation KW - Web-based resource N2 - Background: The ?F-words in Childhood Disability? (Function, Family, Fitness, Fun, Friends, and Future) are an adaptation and an attempt to operationalize the World Health Organization?s (2001) International Classification of Functioning, Disability and Health (ICF) framework. Since the paper was published (November 2011), the ?F-words? have attracted global attention (>12,000 downloads, January 2018). Internationally, people have adopted the ?F-words? ideas, and many families and service providers have expressed a need for more information, tools, and resources on the ?F-words?. Objective: This paper reports on the development and pilot evaluation of a Web-based knowledge translation (KT) resource, the ?F-words? Knowledge Hub that was created to inform people about the ?F-words? and to provide action-oriented tools to support the use of the ?F-words? in practice. Methods: An integrated research team of families and researchers at CanChild Centre for Childhood Disability Research collaborated to develop, implement, and evaluate the Knowledge Hub. A pilot study design was chosen to assess the usability and utility of the Web-based hub before implementing a larger evaluation study. Data were collected using a brief anonymous Web-based survey that included both closed-ended and open-ended questions, with the closed-ended responses being based on a five-point Likert-type scale. We used descriptive statistics and a summary of key themes to report findings. Results: From August to November 2017, the Knowledge Hub received >6,800 unique visitors. In 1 month (November 2017), 87 people completed the survey, of whom 63 completed the full survey and 24 completed 1 or 2 sections. The respondents included 42 clinicians and 30 family members or individuals with a disability. The majority of people visited the Knowledge Hub 1-5 times (n=63) and spent up to 45 minutes exploring (n=61) before providing feedback. Overall, 66 people provided information on the perceived usefulness of the Knowledge Hub, of which 92% (61/66) found the Knowledge Hub user-friendly and stated that they enjoyed exploring the hub, and a majority (n=52) reported that the Knowledge Hub would influence what they did when working with others. From the open-ended responses (n=48), the ?F-words? videos (n=21) and the ?F-words? tools (n=15) were rated as the best features on the Knowledge Hub. Conclusions: The ?F-words? Knowledge Hub is an evidence-informed Web-based KT resource that was useful for respondents, most of whom were seen as ?early adopters? of the ?F-words? concepts. Based on the findings, minor changes are to be made to improve the Knowledge Hub before completing a larger evaluation study on the impact at the family, clinician, and organizational levels with a wider group of users. Our hope is that the ?F-words? Knowledge Hub will become a go-to resource for knowledge sharing and exchange for families and service providers. UR - http://rehab.jmir.org/2018/2/e10439/ UR - http://dx.doi.org/10.2196/10439 UR - http://www.ncbi.nlm.nih.gov/pubmed/30578233 ID - info:doi/10.2196/10439 ER -