TY - JOUR AU - Sinclair, Marlene AU - McCullough, Julie EM 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 DA - 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 AB - 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 - https://doi.org/10.2196/15847 UR - http://www.ncbi.nlm.nih.gov/pubmed/31763986 DO - 10.2196/15847 ID - info:doi/10.2196/15847 ER - TY - JOUR AU - Williamson, Heidi AU - Hamlet, Claire AU - White, Paul AU - Marques, Elsa M R AU - Paling, Thomas AU - Cadogan, Julia AU - Perera, Rohan AU - Rumsey, Nichola AU - Hayward, Leighton AU - Harcourt, Diana PY - 2019 DA - 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. AB - 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 - https://doi.org/10.2196/14776 UR - http://www.ncbi.nlm.nih.gov/pubmed/31755870 DO - 10.2196/14776 ID - info:doi/10.2196/14776 ER - TY - JOUR AU - Bang, Changbae AU - Nam, Yelin AU - Ko, Eun Jae AU - Lee, Wooseong AU - Kim, Byungjae AU - Choi, Yejin AU - Park, Yu Rang PY - 2019 DA - 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 AB - 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 - https://doi.org/10.2196/14924 UR - http://www.ncbi.nlm.nih.gov/pubmed/31651408 DO - 10.2196/14924 ID - info:doi/10.2196/14924 ER - TY - JOUR AU - Stiles-Shields, Colleen AU - Garcia, Brittney AU - Villota, Kimberly AU - Wartman, Elicia AU - Winning, Adrien M AU - Holmbeck, Grayson N PY - 2019 DA - 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 AB - 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 - https://doi.org/10.2196/15153 UR - http://www.ncbi.nlm.nih.gov/pubmed/31603432 DO - 10.2196/15153 ID - info:doi/10.2196/15153 ER - TY - JOUR AU - Lindsay, Sally AU - Cagliostro, Elaine AU - Stinson, Jennifer AU - Leck, Joanne PY - 2019 DA - 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 AB - 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 - https://doi.org/10.2196/12653 UR - http://www.ncbi.nlm.nih.gov/pubmed/31518302 DO - 10.2196/12653 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, Shuenn Tsong AU - Chen, Tzer-Shyong AU - Chung, Yu-Fang AU - Lai, Feipei AU - Liao, Wen-Huei PY - 2019 DA - 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 AB - 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 - https://doi.org/10.2196/12033 UR - http://www.ncbi.nlm.nih.gov/pubmed/30932870 DO - 10.2196/12033 ID - info:doi/10.2196/12033 ER - TY - JOUR AU - Lindsay, Sally AU - Cagliostro, Elaine AU - Leck, Joanne AU - Stinson, Jennifer PY - 2019 DA - 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 AB - 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 - https://doi.org/10.2196/12088 UR - http://www.ncbi.nlm.nih.gov/pubmed/31518315 DO - 10.2196/12088 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, Jan Willem PY - 2018 DA - 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 AB - 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 - https://doi.org/10.2196/10439 UR - http://www.ncbi.nlm.nih.gov/pubmed/30578233 DO - 10.2196/10439 ID - info:doi/10.2196/10439 ER -