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 -