@Article{info:doi/10.2196/19679, author="Jeong, Seung-Hyun and Lee, Rim Tae and Kang, Bae Jung and Choi, Mun-Taek", title="Analysis of Health Insurance Big Data for Early Detection of Disabilities: Algorithm Development and Validation", journal="JMIR Med Inform", year="2020", month="Nov", day="23", volume="8", number="11", pages="e19679", keywords="early detection of disabilities", keywords="health insurance", keywords="big data", keywords="feature selection", keywords="classification", abstract="Background: Early detection of childhood developmental delays is very important for the treatment of disabilities. Objective: To investigate the possibility of detecting childhood developmental delays leading to disabilities before clinical registration by analyzing big data from a health insurance database. Methods: In this study, the data from children, individuals aged up to 13 years (n=2412), from the Sample Cohort 2.0 DB of the Korea National Health Insurance Service were organized by age range. Using 6 categories (having no disability, having a physical disability, having a brain lesion, having a visual impairment, having a hearing impairment, and having other conditions), features were selected in the order of importance with a tree-based model. We used multiple classification algorithms to find the best model for each age range. The earliest age range with clinically significant performance showed the age at which conditions can be detected early. Results: The disability detection model showed that it was possible to detect disabilities with significant accuracy even at the age of 4 years, about a year earlier than the mean diagnostic age of 4.99 years. Conclusions: Using big data analysis, we discovered the possibility of detecting disabilities earlier than clinical diagnoses, which would allow us to take appropriate action to prevent disabilities. ", doi="10.2196/19679", url="http://medinform.jmir.org/2020/11/e19679/", url="http://www.ncbi.nlm.nih.gov/pubmed/33226352" } @Article{info:doi/10.2196/17903, author="Garcia-Rudolph, Alejandro and Saur{\'i}, Joan and Cegarra, Blanca and Bernabeu Guitart, Montserrat", title="Discovering the Context of People With Disabilities: Semantic Categorization Test and Environmental Factors Mapping of Word Embeddings from Reddit", journal="JMIR Med Inform", year="2020", month="Nov", day="20", volume="8", number="11", pages="e17903", keywords="disability", keywords="Reddit", keywords="social media", keywords="word2vec", keywords="semantic categorization", keywords="silhouette", keywords="activities of daily life", keywords="aspects of daily life", keywords="context", keywords="embeddings", abstract="Background: The World Health Organization's International Classification of Functioning Disability and Health (ICF) conceptualizes disability not solely as a problem that resides in the individual, but as a health experience that occurs in a context. Word embeddings build on the idea that words that occur in similar contexts tend to have similar meanings. In spite of both sharing ``context'' as a key component, word embeddings have been scarcely applied in disability. In this work, we propose social media (particularly, Reddit) to link them. Objective: The objective of our study is to train a model for generating word associations using a small dataset (a subreddit on disability) able to retrieve meaningful content. This content will be formally validated and applied to the discovery of related terms in the corpus of the disability subreddit that represent the physical, social, and attitudinal environment (as defined by a formal framework like the ICF) of people with disabilities. Methods: Reddit data were collected from pushshift.io with the pushshiftr R package as a wrapper. A word2vec model was trained with the wordVectors R package using the disability subreddit comments, and a preliminary validation was performed using a subset of Mikolov analogies. We used Van Overschelde's updated and expanded version of the Battig and Montague norms to perform a semantic categories test. Silhouette coefficients were calculated using cosine distance from the wordVectors R package. For each of the 5 ICF environmental factors (EF), we selected representative subcategories addressing different aspects of daily living (ADLs); then, for each subcategory, we identified specific terms extracted from their formal ICF definition and ran the word2vec model to generate their nearest semantic terms, validating the obtained nearest semantic terms using public evidence. Finally, we applied the model to a specific subcategory of an EF involved in a relevant use case in the field of rehabilitation. Results: We analyzed 96,314 comments posted between February 2009 and December 2019, by 10,411 Redditors. We trained word2vec and identified more than 30 analogies (eg, breakfast -- 8 am + 8 pm = dinner). The semantic categorization test showed promising results over 60 categories; for example, s(A relative)=0.562, s(A sport)=0.475 provided remarkable explanations for low s values. We mapped the representative subcategories of all EF chapters and obtained the closest terms for each, which we confirmed with publications. This allowed immediate access (? 2 seconds) to the terms related to ADLs, ranging from apps ``to know accessibility before you go'' to adapted sports (boccia). For example, for the support and relationships EF subcategory, the closest term discovered by our model was ``resilience,'' recently regarded as a key feature of rehabilitation, not yet having one unified definition. Our model discovered 10 closest terms, which we validated with publications, contributing to the ``resilience'' definition. Conclusions: This study opens up interesting opportunities for the exploration and discovery of the use of a word2vec model that has been trained with a small disability dataset, leading to immediate, accurate, and often unknown (for authors, in many cases) terms related to ADLs within the ICF framework. ", doi="10.2196/17903", url="http://medinform.jmir.org/2020/11/e17903/", url="http://www.ncbi.nlm.nih.gov/pubmed/33216006" } @Article{info:doi/10.2196/16012, author="Li, Laiyou and Sun, Ning and Yu, Libo and Dong, Xiaoxin and Zhao, Jing and Ying, Yuchen", title="The Needs of Older Adults With Disabilities With Regard to Adaptation to Aging and Home Care: Questionnaire Study", journal="JMIR Rehabil Assist Technol", year="2020", month="Oct", day="26", volume="7", number="2", pages="e16012", keywords="community", keywords="disability", keywords="older people", keywords="adaptation to aging", keywords="influence factor", abstract="Background: The home environment is an important means of support in home-based care services for older people. A home environment that facilitates healthy aging can help older adults maximize their self-care abilities and integrate and utilize care resources. However, some home environments fail to meet the needs of older adults with disabilities. Objective: This paper aimed to study the needs of older adults with disabilities with respect to adaptation to aging, and to analyze the associations of individual factors and dysfunction with those needs. Methods: A questionnaire survey was administered to 400 older adults with disabilities from 10 communities in Ningbo City, Zhejiang Province, China. The survey was conducted from August 2018 to February 2019. Results: A total of 370 participants completed the survey. The proportion of participants with mild dysfunction was the highest (128/370, 34.59\%), followed by those with extremely mild (107/370, 28.92\%), moderate (72/370, 19.46\%), and severe (63/370, 17.03\%) dysfunction. The care needs of older adults with extremely mild and mild dysfunction pertained primarily to resting, a supportive environment, and transformation of indoor activity spaces. The care needs of older adults with moderate dysfunction pertained mainly to resting and renovation of bathing and toilet spaces. Factors influencing the needs of older adults with disabilities were dysfunction (P=.007), age (P=.006), monthly income (P=.005), and living conditions (P=.04). Conclusions: The needs of older adults with disabilities varied by the degree of dysfunction, and many factors influenced these needs in the community. These findings may provide a scientific basis for developing community-specific aging-related adaptation services for older adults with disabilities in the future. ", doi="10.2196/16012", url="http://rehab.jmir.org/2020/2/e16012/", url="http://www.ncbi.nlm.nih.gov/pubmed/33104000" } @Article{info:doi/10.2196/21038, author="Sezgin, Emre and Noritz, Garey and Hoffman, Jeffrey and Huang, Yungui", title="A Medical Translation Assistant for Non--English-Speaking Caregivers of Children With Special Health Care Needs: Proposal for a Scalable and Interoperable Mobile App", journal="JMIR Res Protoc", year="2020", month="Oct", day="14", volume="9", number="10", pages="e21038", keywords="medical translation", keywords="mobile app", keywords="special health care needs", keywords="pediatrics", keywords="caregiver-provider communication", abstract="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. ", doi="10.2196/21038", url="http://www.researchprotocols.org/2020/10/e21038/", url="http://www.ncbi.nlm.nih.gov/pubmed/33051177" } @Article{info:doi/10.2196/18431, author="Masina, Fabio and Orso, Valeria and Pluchino, Patrik and Dainese, Giulia and Volpato, Stefania and Nelini, Cristian and Mapelli, Daniela and Spagnolli, Anna and Gamberini, Luciano", title="Investigating the Accessibility of Voice Assistants With Impaired Users: Mixed Methods Study", journal="J Med Internet Res", year="2020", month="Sep", day="25", volume="22", number="9", pages="e18431", keywords="voice assistants", keywords="accessibility", keywords="cognitive functions", keywords="disability", keywords="ambient assisted living", abstract="Background: Voice assistants allow users to control appliances and functions of a smart home by simply uttering a few words. Such systems hold the potential to significantly help users with motor and cognitive disabilities who currently depend on their caregiver even for basic needs (eg, opening a door). The research on voice assistants is mainly dedicated to able-bodied users, and studies evaluating the accessibility of such systems are still sparse and fail to account for the participants' actual motor, linguistic, and cognitive abilities. Objective: The aim of this work is to investigate whether cognitive and/or linguistic functions could predict user performance in operating an off-the-shelf voice assistant (Google Home). Methods: A group of users with disabilities (n=16) was invited to a living laboratory and asked to interact with the system. Besides collecting data on their performance and experience with the system, their cognitive and linguistic skills were assessed using standardized inventories. The identification of predictors (cognitive and/or linguistic) capable of accounting for an efficient interaction with the voice assistant was investigated by performing multiple linear regression models. The best model was identified by adopting a selection strategy based on the Akaike information criterion (AIC). Results: For users with disabilities, the effectiveness of interacting with a voice assistant is predicted by the Mini-Mental State Examination (MMSE) and the Robertson Dysarthria Profile (specifically, the ability to repeat sentences), as the best model shows (AIC=130.11). Conclusions: Users with motor, linguistic, and cognitive impairments can effectively interact with voice assistants, given specific levels of residual cognitive and linguistic skills. More specifically, our paper advances practical indicators to predict the level of accessibility of speech-based interactive systems. Finally, accessibility design guidelines are introduced based on the performance results observed in users with disabilities. ", doi="10.2196/18431", url="http://www.jmir.org/2020/9/e18431/", url="http://www.ncbi.nlm.nih.gov/pubmed/32975525" } @Article{info:doi/10.2196/17947, author="Siedlikowski, Maia and Rauch, Frank and Tsimicalis, Argerie", title="Giving Children With Osteogenesis Imperfecta a Voice: Participatory Approach for the Development of the Interactive Assessment and Communication Tool Sisom OI", journal="J Med Internet Res", year="2020", month="Sep", day="22", volume="22", number="9", pages="e17947", keywords="child health", keywords="symptom assessment, communication, mobile apps, software", abstract="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. ", doi="10.2196/17947", url="http://www.jmir.org/2020/9/e17947/", url="http://www.ncbi.nlm.nih.gov/pubmed/32960176" } @Article{info:doi/10.2196/20667, author="Lai, Byron and Davis, Drew and Narasaki-Jara, Mai and Hopson, Betsy and Powell, Danielle and Gowey, Marissa and Rocque, G. Brandon and Rimmer, H. James", title="Feasibility of a Commercially Available Virtual Reality System to Achieve Exercise Guidelines in Youth With Spina Bifida: Mixed Methods Case Study", journal="JMIR Serious Games", year="2020", month="Sep", day="3", volume="8", number="3", pages="e20667", keywords="physical activity", keywords="active video gaming", keywords="exergaming", keywords="disability", keywords="Oculus Quest", abstract="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. ", doi="10.2196/20667", url="http://games.jmir.org/2020/3/e20667/", url="http://www.ncbi.nlm.nih.gov/pubmed/32880577" } @Article{info:doi/10.2196/16351, author="Allin, Sonya and Shepherd, John and Thorson, Teri and Tomasone, Jennifer and Munce, Sarah and Linassi, Gary and McBride, B. Christopher and Jiancaro, Tizneem and Jaglal, Susan", title="Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation", journal="JMIR Rehabil Assist Technol", year="2020", month="Jul", day="31", volume="7", number="2", pages="e16351", keywords="community-based participatory research", keywords="spinal cord injury", keywords="self-management", keywords="motivational interviewing", keywords="internet-based intervention", abstract="Background: Individuals with spinal cord injury (SCI) are at high risk of experiencing secondary conditions like pressure injuries. Self-management programs may reduce the risk of complications, but traditional programs have proven to be insufficiently tailored to the needs of people with SCI. To overcome barriers to self-management support, a web-based, self-management program was developed for Canadians with SCI called SCI \& U. Objective: This study aims to evaluate the feasibility and potential impact of the SCI \& U program in the context of a mixed methods pilot study. Methods: The study followed an explanatory, sequential mixed methods design. Participants (N=11) were Canadians with SCI who had been living in the community for more than 1 year. Each took part in a self-paced, six-session self-management program guided by a trained peer health coach. During sessions, participants could discuss a health topic with their coach from a predefined list (eg, skin or bowel management). Quantitative data were gathered before and after program participation to assess program feasibility and impact. Feasibility measures included attrition rates, frequency of topics selected, and recorded goals, whereas impact measures included measures of self-efficacy (University of Washington Self-Efficacy Scale [UW-SES]), mood (Personal Health Questionnaire Depression Scale [PHQ-8]), secondary conditions (Spinal Cord Injury Secondary Conditions Scale [SCI-SCS]), and resilience (Spinal Cord Injury Quality of Life Resilience Scale [SCI-QOL-R]). Qualitative measures were based on postintervention interviews; these were designed to confirm and expand on quantitative Results: Of the 11 participants, 10 completed pre- and postassessments, and 6 coaching sessions. Sessions lasted between 31 and 81 min (average 55, SD 13), and the duration of the program ranged from 35 to 88 days (average 56, SD 23). Diet and exercise were selected as topics 40\% (20/50 sessions with topics) of the time, whereas topics such as mental health, bladder management, pain, and bowel management were chosen less frequently. Results gathered before and after the pilot study demonstrated improvements with moderate effect sizes on the UW-SES and the electronic health literacy scale (ie, Hedges g>0.5). Effect sizes for measures of resilience (SCI-QOL-R), depression (PHQ-8), and secondary conditions (SCI-SCS) were small (ie, Hedges g>0.3). Qualitative results confirmed a common focus on diet and exercise, and defined coaches as sources of accountability, information, reassurance and affirmation, and emotional and technical support. Conclusions: Results demonstrated that a web-based self-management program is feasible and acceptable by Canadians with SCI. Results also indicated a web-based, peer-led self-management program may impact resilience, self-efficacy, mood, and secondary complications. Finally, results illuminated the role of the coach in facilitating behavior change. Future work seeks to validate results in the context of a randomized controlled trial. ", doi="10.2196/16351", url="http://rehab.jmir.org/2020/2/e16351/", url="http://www.ncbi.nlm.nih.gov/pubmed/32589148" } @Article{info:doi/10.2196/16310, author="DeForte, Shelly and Sezgin, Emre and Huefner, Janelle and Lucius, Shana and Luna, John and Satyapriya, A. Anand and Malhotra, Prashant", title="Usability of a Mobile App for Improving Literacy in Children With Hearing Impairment: Focus Group Study", journal="JMIR Hum Factors", year="2020", month="May", day="28", volume="7", number="2", pages="e16310", keywords="hearing aids", keywords="focus groups", keywords="cochlear implants", keywords="literacy", keywords="reading", keywords="hearing loss", keywords="hearing impairment", keywords="mobile applications", keywords="qualitative study", keywords="usability", keywords="aural rehabilitation", abstract="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. ", doi="10.2196/16310", url="http://humanfactors.jmir.org/2020/2/e16310/", url="http://www.ncbi.nlm.nih.gov/pubmed/32205305" } @Article{info:doi/10.2196/15452, author="Stuttard, Lucy and Hewitt, Catherine and Fairhurst, Caroline and Weatherly, Helen and Walker, Simon and Longo, Francesco and Maddison, Jane and Boyle, Philip and Beresford, Bryony", title="Effectiveness and Cost-Effectiveness of Receiving a Hearing Dog on Mental Well-Being and Health in People With Hearing Loss: Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2020", month="Apr", day="17", volume="9", number="4", pages="e15452", keywords="randomized controlled trial", keywords="hearing loss", keywords="qualitative research", keywords="economics", keywords="assistance dog", abstract="Background: People with hearing loss, particularly those who lose their hearing in adulthood, are at an increased risk of social isolation, mental health difficulties, unemployment, loss of independence, risk of accidents, and impaired quality of life. In the United Kingdom, a single third-sector organization provides hearing dogs, a specific type of assistance dog trained to provide sound support to people with hearing loss. These dogs may also deliver numerous psychosocial benefits to recipients. This has not previously been fully investigated. Objective: The study aims to evaluate the impact of a hearing dog partnership on the lives of individuals with severe or profound hearing loss. Methods: A 2-arm, randomized controlled trial will be conducted within the United Kingdom with 162 hearing dog applicants, aged 18 years and older. Participants will be randomized 1:1 using a matched-pairs design to receive a hearing dog sooner than usual (intervention arm: arm B) or to receive a hearing dog within the usual timeframe (comparator arm: arm A). In the effectiveness analysis, the primary outcome is a comparison of mental well-being 6 months after participants in arm B have received a hearing dog (arm A have not yet received a hearing dog), measured using the Short Warwick Edinburgh Mental Well-Being Scale. Secondary outcome measures include the Patient Health Questionnaire-9, Generalized Anxiety Disorder-7, and Work and Social Adjustments Scale. An economic evaluation will assess the cost-effectiveness, including health-related quality-adjusted life years using the EuroQol 5 Dimensions and social care--related quality-adjusted life years. Participants will be followed up for up to 2 years. A nested qualitative study will investigate the impacts of having a hearing dog and how these impacts occur. Results: The study is funded by the National Institute for Health Research's School for Social Care Research. Recruitment commenced in March 2017 and is now complete. A total of 165 participants were randomized. Data collection will continue until January 2020. Results will be published in peer-reviewed journals and at conferences. A summary of the findings will be made available to participants. Ethical approval was received from the University of York's Department of Social Policy and Social Work Research Ethics Committee (reference SPSW/S/17/1). Conclusions: The findings from this study will provide, for the first time, strong and reliable evidence on the impact of having a hearing dog on people's lives in terms of their quality of life, well-being, and mental health. Trial Registration: International Standard Randomised Controlled Trial Number Registry ISRCTN36452009; http://www.isrctn.com/ISRCTN36452009 International Registered Report Identifier (IRRID): DERR1-10.2196/15452 ", doi="10.2196/15452", url="https://www.researchprotocols.org/2020/4/e15452", url="http://www.ncbi.nlm.nih.gov/pubmed/32301737" } @Article{info:doi/10.2196/14615, author="Berglind, Daniel and Yacaman-Mendez, Diego and Lavebratt, Catharina and Forsell, Yvonne", title="The Effect of Smartphone Apps Versus Supervised Exercise on Physical Activity, Cardiorespiratory Fitness, and Body Composition Among Individuals With Mild-to-Moderate Mobility Disability: Randomized Controlled Trial", journal="JMIR Mhealth Uhealth", year="2020", month="Feb", day="4", volume="8", number="2", pages="e14615", keywords="mobility disability", keywords="physical activity", keywords="cardiorespiratory fitness", keywords="exercise", keywords="randomized controlled trial", keywords="app", keywords="smartphone", abstract="Background: Adequate levels of physical activity (PA) and good cardiorespiratory fitness (CRF) are associated with profound health benefits for individuals with mobility disability (MD). Despite the vast amount of research published in the field of PA interventions, little attention has been given to individuals with MD. Objective: The aim of this study was to examine the efficacy of an app-based versus a supervised exercise and health coaching program to support adults with MD to increase levels of PA, CRF, and improve body composition. Methods: Participants with self-perceived MD, aged 18 to 45 years, were included in this 12-week parallel-group randomized controlled trial and allocated at random to an app-based intervention, using commercially available apps---the Swedish Military training app (FMTK), the Acupedo walking app, and the LogMyFood food photography app---or a supervised exercise and health coaching intervention, including 1 weekly supervised exercise session and healthy lifestyle coaching. The primary outcome was the level of moderate-to-vigorous PA (MVPA) measured with accelerometers. Secondary outcomes included CRF measured by a submaximal test performed on a stationary bicycle and body composition measured by bioelectrical impedance. All outcomes were measured at baseline, 6 weeks, and 12 weeks. Linear mixed-effect models were used to assess the between-group differences, as well as the within-group changes through time, in each intervention group. Results: A total of 110 participants with MD were randomized to an app-based intervention (n=55) or a supervised exercise and health intervention (n=55). The mean age of participants was 34.9 years (SD 6.1), and 81.8\% (90/110) of the participants were women. CRF showed a moderate increase in both groups after 12 weeks---1.07 (95\% CI --0.14 to 2.27) mL/kg/min increase in the app-based group and 1.76 (95\% CI 0.70 to 2.83) mLkg/min increase in the supervised exercise group. However, the intention-to-treat analysis showed no significant differences between the groups in MVPA or CRF after 12 weeks. Waist circumference was significantly lower in the app-based intervention group. Conclusions: Commercially available apps increased levels of CRF and improved body composition over 12 weeks to the same extent as supervised exercise sessions, showing that both are equally effective. However, neither the app-based intervention nor the supervised exercise intervention increased MVPA. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN): 22387524; http://isrctn.com/ISRCTN22387524. ", doi="10.2196/14615", url="https://mhealth.jmir.org/2020/2/e14615", url="http://www.ncbi.nlm.nih.gov/pubmed/32014846" } @Article{info:doi/10.2196/15464, author="Su, Jiunn-Yih and He, Yaofeng Vincent and Guthridge, Steven and Silburn, Sven", title="The Impact of Hearing Impairment on the Life Trajectories of Aboriginal Children in Remote Australia: Protocol for the Hearing Loss in Kids Project", journal="JMIR Res Protoc", year="2020", month="Jan", day="15", volume="9", number="1", pages="e15464", keywords="data linkage", keywords="hearing impairment", keywords="indigenous population", keywords="child development", keywords="primary schools", keywords="academic achievement", keywords="child maltreatment", keywords="juvenile delinquency", abstract="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 ", doi="10.2196/15464", url="https://www.researchprotocols.org/2020/1/e15464", url="http://www.ncbi.nlm.nih.gov/pubmed/31939348" } @Article{info:doi/10.2196/15060, author="Zhou, Leming and Saptono, Andi and Setiawan, Agus I. Made and Parmanto, Bambang", title="Making Self-Management Mobile Health Apps Accessible to People With Disabilities: Qualitative Single-Subject Study", journal="JMIR Mhealth Uhealth", year="2020", month="Jan", day="3", volume="8", number="1", pages="e15060", keywords="mobile app", keywords="self-management", keywords="accessibility", keywords="personalization", abstract="Background: Over the past decade, a large number of mobile health (mHealth) apps have been created to help individuals to better manage their own health. However, very few of these mHealth apps were specifically designed for people with disabilities, and only a few of them have been assessed for accessibility for people with disabilities. As a result, people with disabilities have difficulties using many of these mHealth apps. Objective: The objective of this study was to identify an approach that can be generally applied to improve the accessibility of mHealth apps. Methods: We recruited 5 study participants with a primary diagnosis of cerebral palsy or spinal cord injury. All the participants had fine motor impairment or lack of dexterity, and hence, they had difficulties using some mHealth apps. These 5 study participants were first asked to use multiple modules in the client app of a novel mHealth system (iMHere 2.0), during which their performance was observed. Interviews were conducted post use to collect study participants' desired accessibility features. These accessibility features were then implemented into the iMHere 2.0 client app as customizable options. The 5 participants were asked to use the same modules in the app again, and their performance was compared with that in the first round. A brief interview and a questionnaire were then performed at the end of the study to collect the 5 participants' comments and impression of the iMHere 2.0 app in general and of the customizable accessibility features. Results: Study results indicate that the study participants on their first use of the iMHere 2.0 client app experienced various levels of difficulty consistent with the severity of their lack of dexterity. Their performance was improved after their desired accessibility features were added into the app, and they liked the customizable accessibility features. These participants also expressed an interest in using this mHealth system for their health self-management tasks. Conclusions: The accessibility features identified in this study improved the accessibility of the mHealth app for people with dexterity issues. Our approach for improving mHealth app accessibility may also be applied to other mHealth apps to make those apps accessible to people with disabilities. ", doi="10.2196/15060", url="https://mhealth.jmir.org/2020/1/e15060", url="http://www.ncbi.nlm.nih.gov/pubmed/31899453" } @Article{info:doi/10.2196/15924, author="Castro, R. Aimee and Chougui, Khadidja and Bilodeau, Claudette and Tsimicalis, Argerie", title="Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study", journal="J Med Internet Res", year="2019", month="Dec", day="18", volume="21", number="12", pages="e15924", keywords="smartphone", keywords="caregivers", keywords="pediatrics", keywords="rare diseases", keywords="telemedicine", keywords="quality improvement", keywords="social media", keywords="chronic disease", keywords="osteogenesis imperfecta", abstract="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. ", doi="10.2196/15924", url="http://www.jmir.org/2019/12/e15924/", url="http://www.ncbi.nlm.nih.gov/pubmed/31850851" } @Article{info:doi/10.2196/15847, author="Sinclair, Marlene and McCullough, EM Julie and Elliott, David and Latos-Bielenska, Anna and Braz, Paula and Cavero-Carbonell, Clara and Jamry-Dziurla, Anna and Jo{\~a}o Santos, Ana and P{\'a}ramo-Rodr{\'i}guez, Luc{\'i}a", title="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", journal="J Med Internet Res", year="2019", month="Nov", day="25", volume="21", number="11", pages="e15847", keywords="e-forum", keywords="social media", keywords="Web-based survey", keywords="Facebook", keywords="STAI", keywords="Down syndrome", keywords="cleft lip with or without cleft palate", keywords="congenital heart defects", keywords="spina bifida", keywords="parents", keywords="ocularcentrism", keywords="coproduction", abstract="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. ", doi="10.2196/15847", url="http://www.jmir.org/2019/11/e15847/", url="http://www.ncbi.nlm.nih.gov/pubmed/31763986" } @Article{info:doi/10.2196/14776, author="Williamson, Heidi and Hamlet, Claire and White, Paul and Marques, R. Elsa M. and Paling, Thomas and Cadogan, Julia and Perera, Rohan and Rumsey, Nichola and Hayward, Leighton and Harcourt, Diana", title="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", journal="JMIR Ment Health", year="2019", month="Nov", day="22", volume="6", number="11", pages="e14776", keywords="physical appearance, body image, disfigurement", keywords="visible difference", keywords="adolescents", keywords="young people", keywords="psychological support", keywords="online intervention.", abstract="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 ", doi="10.2196/14776", url="http://mental.jmir.org/2019/11/e14776/", url="http://www.ncbi.nlm.nih.gov/pubmed/31755870" } @Article{info:doi/10.2196/13722, author="Buimer, Hendrik and Schellens, Renske and Kostelijk, Tjerk and Nemri, Abdellatif and Zhao, Yan and Van der Geest, Thea and Van Wezel, Richard", title="Opportunities and Pitfalls in Applying Emotion Recognition Software for Persons With a Visual Impairment: Simulated Real Life Conversations", journal="JMIR Mhealth Uhealth", year="2019", month="Nov", day="21", volume="7", number="11", pages="e13722", keywords="visual impairment", keywords="emotion recognition", keywords="tactile", keywords="social interaction", abstract="Background: A large part of the communication cues exchanged between persons is nonverbal. Persons with a visual impairment are often unable to perceive these cues, such as gestures or facial expression of emotions. In a previous study, we have determined that visually impaired persons can increase their ability to recognize facial expressions of emotions from validated pictures and videos by using an emotion recognition system that signals vibrotactile cues associated with one of the six basic emotions. Objective: The aim of this study was to determine whether the previously tested emotion recognition system worked equally well in realistic situations and under controlled laboratory conditions. Methods: The emotion recognition system consists of a camera mounted on spectacles, a tablet running facial emotion recognition software, and a waist belt with vibrotactile stimulators to provide haptic feedback representing Ekman's six universal emotions. A total of 8 visually impaired persons (4 females and 4 males; mean age 46.75 years, age range 28-66 years) participated in two training sessions followed by one experimental session. During the experiment, participants engaged in two 15 minute conversations, in one of which they wore the emotion recognition system. To conclude the study, exit interviews were conducted to assess the experiences of the participants. Due to technical issues with the registration of the emotion recognition software, only 6 participants were included in the video analysis. Results: We found that participants were quickly able to learn, distinguish, and remember vibrotactile signals associated with the six emotions. A total of 4 participants felt that they were able to use the vibrotactile signals in the conversation. Moreover, 5 out of the 6 participants had no difficulties in keeping the camera focused on the conversation partner. The emotion recognition was very accurate in detecting happiness but performed unsatisfactorily in recognizing the other five universal emotions. Conclusions: The system requires some essential improvements in performance and wearability before it is ready to support visually impaired persons in their daily life interactions. Nevertheless, the participants saw potential in the system as an assistive technology, assuming their user requirements can be met. ", doi="10.2196/13722", url="https://mhealth.jmir.org/2019/11/e13722", url="http://www.ncbi.nlm.nih.gov/pubmed/31750838" } @Article{info:doi/10.2196/12381, author="Mowforth, Daniel Oliver and Davies, Marshall Benjamin and Kotter, Reinhard Mark", title="Quality of Life Among Informal Caregivers of Patients With Degenerative Cervical Myelopathy: Cross-Sectional Questionnaire Study", journal="Interact J Med Res", year="2019", month="Nov", day="7", volume="8", number="4", pages="e12381", keywords="spinal cord diseases", keywords="spondylosis", keywords="spinal osteophytosis", keywords="surveys and questionnaires", keywords="quality of life", keywords="chronic disease", abstract="Background: Degenerative cervical myelopathy (DCM) is a common, chronic neurological condition that severely affects individuals by causing a range of disabling symptoms, frequently at a time around the peak of their careers. Subsequently, individuals with DCM often become dependent on informal care arrangements. The significant economic contribution of informal care and its burden on care providers are becoming increasingly recognized. Objective: This study aimed to measure the quality of life of DCM informal caregivers and provide preliminary insight into possible contributing factors. Methods: Carers of individuals with DCM completed a Web-based survey hosted by Myelopathy.org, an international DCM charity. Carer quality of life was assessed in the form of caregiver happiness and 7 dimensions of carer burden using the Care-Related Quality of Life (CarerQol) instrument. The relationships between patient disease severity, patient pain, and carer quality of life were investigated. Differences in carer quality of life were assessed across patient and carer demographic groups, including between UK and US carers. Results: DCM caregivers experienced substantial burden as a result of their caregiving (mean CarerQol-7D=64.1; 95\% CI 58.8-69.5) and low happiness (mean CarerQol-VAS [Visual Analog Scale]=6.3; 95\% CI 5.7-6.9). Burden was high and happiness was low in DCM carers when compared with a large, mixed-disease study of adult informal carers where CarerQol-7D was 79.1 and CarerQol-VAS was 7.1. No significant relationship was found between DCM carer quality of life and patient disease severity and pain scores. DCM carer quality of life appeared uniform across all patient and carer demographic groups. Conclusions: Caring for individuals with DCM is associated with reduced quality of life in the form of significant burden and reduced happiness. Reductions appear greater in DCM than in other diseases investigated. However, no simple relationship was identified between individual patient or carer factors and carer quality of life. ", doi="10.2196/12381", url="http://www.i-jmr.org/2019/4/e12381/", url="http://www.ncbi.nlm.nih.gov/pubmed/31697240" } @Article{info:doi/10.2196/13560, author="Campeau-Vallerand, Charles and Michaud, Fran{\c{c}}ois and Routhier, Fran{\c{c}}ois and Archambault, S. Philippe and L{\'e}tourneau, Dominic and G{\'e}linas-Bronsard, Dominique and Auger, Claudine", title="Development of a Web-Based Monitoring System for Power Tilt-in-Space Wheelchairs: Formative Evaluation", journal="JMIR Rehabil Assist Technol", year="2019", month="Oct", day="26", volume="6", number="2", pages="e13560", keywords="wheelchairs", keywords="eHealth", keywords="health behavior", keywords="pressure ulcers", keywords="self-help devices", keywords="remote sensing technology", keywords="technology assessment", abstract="Background: In order to prevent pressure ulcers, wheelchair users are advised to regularly change position to redistribute or eliminate pressure between the buttocks region and the seat of the wheelchair. A power tilt-in-space wheelchair (allowing simultaneous pivoting of the seat and the backrest of the wheelchair toward the back or front) meets many clinical purposes, including pressure management, increased postural control, and pain management. However, there is a significant gap between the use of tilt as recommended by clinicians and its actual usage. A Web-based electronic health (eHealth) intervention, including a goal setting, monitoring, reminder, and feedback system of the use of power tilt-in-space wheelchairs was developed. The intervention incorporates behavior change principles to promote optimal use of tilt and to improve clinical postprocurement follow-up. Objective: This study aimed to conduct a formative evaluation of the intervention prototype to pinpoint the functionalities needed by end users, namely, power wheelchair users and clinicians. Methods: On the basis of an evaluation framework for Web-based eHealth interventions, semistructured interviews were conducted with power wheelchair users and clinicians. A content analysis was performed with a mix of emerging and a priori concepts. Results: A total of 5 users of power tilt-in-space wheelchairs and 5 clinicians who had experience in the field of mobility aids aged 23 to 55 years were recruited. Participants found the Web interface and the physical components easy to use. They also appreciated the reminder feature that encourages the use of the tilt-in-space and the customization of performance goals. Participants requested improvements to the visual design and learnability of the Web interface, the customization of reminders, feedback about specific tilt parameters, and the bidirectionality of the interaction between the user and the clinician. They thought the current version of the intervention prototype could promote optimal use of the tilt and improve clinical postprocurement follow-up. Conclusions: On the basis of the needs identified by power wheelchair users and clinicians regarding the prototype of a power tilt-in-space wheelchair monitoring system, 3 main directions were defined for future development of the intervention. Further research with new wheelchair users, manual tilt-in-space wheelchairs, various age groups, and family caregivers is recommended to continue the formative evaluation of the prototype. ", doi="10.2196/13560", url="https://rehab.jmir.org/2019/2/e13560", url="http://www.ncbi.nlm.nih.gov/pubmed/31674918" } @Article{info:doi/10.2196/12981, author="Zhou, Leming and Parmanto, Bambang", title="Reaching People With Disabilities in Underserved Areas Through Digital Interventions: Systematic Review", journal="J Med Internet Res", year="2019", month="Oct", day="25", volume="21", number="10", pages="e12981", keywords="systematic review", keywords="digital intervention", keywords="electronic intervention", keywords="e-intervention", keywords="underserved area", keywords="disability", keywords="telemedicine", keywords="telerehabilitation", keywords="eHealth", keywords="digital health", abstract="Background: People with disabilities need rehabilitation interventions to improve their physical functioning, mental status, and quality of life. Many rehabilitation interventions can be delivered electronically (``digitally'') via telehealth systems. For people with disabilities in underserved areas, electronically delivered rehabilitation interventions may be the only feasible service available for them. Objective: The objective of this study was to evaluate the current status of digital interventions for people with disabilities in remote and underserved areas. Methods: A systematic review was conducted on this topic. Keyword searches in multiple databases (PubMed, CINAHL, and Inspec) were performed to collect articles published in this field. The obtained articles were selected based on our selection criteria. Of the 198 identified articles, 16 duplicates were removed. After a review of the titles and abstracts of the remaining articles, 165 were determined to be irrelevant to this study and were therefore removed. The full texts of the remaining 17 articles were reviewed, and 6 of these articles were removed as being irrelevant to this study. The 11 articles remaining were discussed and summarized by 2 reviewers. Results: These 11 studies cover a few types of disabilities, such as developmental disabilities and mobility impairments as well as several types of disability-causing disorders such as stroke, multiple sclerosis, traumatic brain injury, and facio-scapulo-humeral muscular dystrophy. Most of these studies were small-scale case studies and relatively larger-scale cohort studies; the project evaluation methods were mainly pre-post comparison, questionnaires, and interviews. A few studies also performed objective assessment of functional improvement. The intervention technology was mainly videoconferencing. Moreover, 10 of these studies were for people with disabilities in rural areas and 1 was for people in urban communities. Conclusions: A small number of small-scale studies have been conducted on digital interventions for people with disabilities in underserved areas. Although the results reported in these studies were mostly positive, they are not sufficient to prove the effectiveness of telehealth-based digital intervention in improving the situation among people with disabilities because of the small sample sizes and lack of randomized controlled trials. ", doi="10.2196/12981", url="http://www.jmir.org/2019/10/e12981/", url="http://www.ncbi.nlm.nih.gov/pubmed/31654569" } @Article{info:doi/10.2196/15019, author="Olsen, H. Sara and Saperstein, L. Sandra and Gold, S. Robert", title="Content and Feature Preferences for a Physical Activity App for Adults With Physical Disabilities: Focus Group Study", journal="JMIR Mhealth Uhealth", year="2019", month="Oct", day="11", volume="7", number="10", pages="e15019", keywords="adapted sport", keywords="disability", keywords="physical activity", keywords="focus group", keywords="apps", keywords="fitness", keywords="user-centered design", keywords="mHealth", abstract="Background: Hundreds of thousands of mobile phone apps intended to improve health and fitness are available for download across platforms and operating systems; however, few have been designed with people with physical disabilities in mind, ignoring a large population that may benefit from an effective tool to increase physical activity. Objective: This study represents the first phase in the development process of a fitness tracking app for people with physical disabilities interested in nontraditional sport. The aim of this research was to explore user preferences for content, appearance, and operational features of a proposed physical activity app for people with physical disabilities to inform the design of a mobile phone app for increasing physical activity. Methods: Four focus groups were conducted with 15 adults with physical disabilities who currently participate in nontraditional, non-Paralympic sport. Data collected from the focus group sessions centered on content, functionality, and appearance of apps currently used by participants as well as preferences for a future app. Results: Participants (mean age 35.7, SD 9.2 years) were mostly white (13/15, 87\%), and all were currently participating in CrossFit and at least one other sport. Five main themes were identified. Themes included preferences for (1) workout-specific features that were tailored or searchable by disability, (2) user experience that was intuitive and accessible, (3) profile personalization options, (4) gamification features that allowed for competition with self and other users, and (5) social features that allowed increased interaction among users. Participants expressed a primary interest in having a fitness app that was designed for people with physical disabilities such that the features present in other fitness tracking apps were relevant to them and their community of adaptive athletes. Conclusions: The results showed that features related to user experience, social engagement, and gamification are considered important to people with physical disabilities. Features highlighted by participants as most desired, from a consumer perspective, were in line with research identifying attributes of quality apps that use behavior change techniques to influence positive physical activity behavior change. Such insights should inform the development of any fitness app designed to integrate users with disabilities as a primary user base. ", doi="10.2196/15019", url="", url="http://www.ncbi.nlm.nih.gov/pubmed/31605518" } @Article{info:doi/10.2196/13883, author="Alriksson-Schmidt, Ann and Jarl, Johan and Rodby-Bousquet, Elisabet and Lundkvist Josenby, Annika and Westbom, Lena and Himmelmann, Kate and Stadskleiv, Kristine and {\"O}dman, Pia and Svensson, Ingrid and Antfolk, Christian and Malesevic, Nebojsa and Jeglinsky, Ira and Saha, Sanjib and H{\"a}gglund, Gunnar", title="Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP", journal="JMIR Res Protoc", year="2019", month="Oct", day="9", volume="8", number="10", pages="e13883", keywords="cerebral palsy", keywords="health care", keywords="pain", keywords="health", keywords="disability", keywords="multidisciplinary", abstract="Background: Cerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population. Objective: The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP. Methods: MOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed. Results: The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained. Conclusions: In this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP. International Registered Report Identifier (IRRID): DERR1-10.2196/13883 ", doi="10.2196/13883", url="https://www.researchprotocols.org/2019/10/e13883", url="http://www.ncbi.nlm.nih.gov/pubmed/31599737" } @Article{info:doi/10.2196/12667, author="Stetten, E. Nichole and LeBeau, Kelsea and Aguirre, A. Maria and Vogt, B. Alexis and Quintana, R. Jazmine and Jennings, R. Alexis and Hart, Mark", title="Analyzing the Communication Interchange of Individuals With Disabilities Utilizing Facebook, Discussion Forums, and Chat Rooms: Qualitative Content Analysis of Online Disabilities Support Groups", journal="JMIR Rehabil Assist Technol", year="2019", month="Sep", day="30", volume="6", number="2", pages="e12667", keywords="persons with disabilities", keywords="social media", keywords="social support", keywords="online social networking", keywords="internet", keywords="psychosocial support systems", keywords="qualitative research", abstract="Background: Approximately 1 in 5 adults in the United States are currently living with a form of disability. Although the Americans with Disabilities Act has published guidelines to help make developing technology and social networking sites (SNS) more accessible and user-friendly to people with a range of disabilities, persons with disabilities, on average, have less access to the internet than the general population. The quality, content, and medium vary from site to site and have been greatly understudied. Due to this, it is still unclear how persons with disabilities utilize various platforms of online communication for support. Objective: The objective of this study was to qualitatively explore and compare the interactions and connections among online support groups across Facebook, discussion forums, and chat rooms to better understand how persons with disabilities were utilizing different SNS to facilitate communication interchange, disseminate information, and foster community support. Methods: Facebook groups, discussion forums, and chat rooms were chosen based on predetermined inclusion criteria. Data collected included content posted on Facebook groups, forums, and chat rooms as well as the interactions among group members. Data were analyzed qualitatively using the constant comparative method. Results: A total of 133 Facebook posts, 116 forum posts, and 60 hours of chat room discussions were collected and analyzed. In addition, 4 themes were identified for Facebook posts, 3 for discussion forums, and 3 for chat rooms. Persons with disabilities utilized discussion forums and chat rooms in similar ways, but their interactions on Facebook differed in comparison. They seem to interact on a platform based on the specific functions it offers. Conclusions: Interactions on each of the platforms displayed elements of the 4 types of social support, indicating the ability for social support to be facilitated among SNS; however, the type of social support varied by platform. Findings demonstrate that online support platforms serve specific purposes that may not be interchangeable. Through participation on different platforms, persons with disabilities are able to provide and receive social support in various ways, without the barriers and constraints often experienced by this population. ", doi="10.2196/12667", url="http://rehab.jmir.org/2019/2/e12667/", url="http://www.ncbi.nlm.nih.gov/pubmed/31573937" } @Article{info:doi/10.2196/13511, author="Terrill, L. Alexandra and MacKenzie, J. Justin and Reblin, Maija and Einerson, Jackie and Ferraro, Jesse and Altizer, Roger", title="A Collaboration Between Game Developers and Rehabilitation Researchers to Develop a Web-Based App for Persons With Physical Disabilities: Case Study", journal="JMIR Rehabil Assist Technol", year="2019", month="Sep", day="6", volume="6", number="2", pages="e13511", keywords="spinal cord injury", keywords="software design", keywords="interdisciplinary health team", keywords="rehabilitation", keywords="internet", abstract="Background: Individuals with a disability and their partners, who often provide care, are both at risk for depression and lower quality of life. Mobile health (mHealth) interventions are promising to address barriers to mental health care. Rehabilitation researchers and software development researchers must collaborate effectively with each other and with clinical and patient stakeholders to ensure successful mHealth development. Objective: This study aimed to aid researchers interested in mHealth software development by describing the collaborative process between a team of rehabilitation researchers, software development researchers, and stakeholders. Thus, we provide a framework (conceptual model) for other teams to replicate to build a Web-based mHealth app for individuals with physical disability. Methods: Rehabilitation researchers, software development researchers, and stakeholders (people with physical disabilities and clinicians) are involved in an iterative software development process. The overall process of developing an mHealth intervention includes initial development meetings and a co-design method called design box, in which the needs and key elements of the app are discussed. On the basis of the objectives outlined, a prototype is developed and goes through scoping iterations with feedback from stakeholders and end users. The prototype is then tested by users to identify technical errors and gather feedback on usability and accessibility. Results: Illustrating the overall development process, we present a case study based on our experience developing an app (SupportGroove) for couples coping with spinal cord injury. Examples of how we addressed specific challenges are also included. For example, feedback from stakeholders resulted in development of app features for individuals with limited functional ability. Initial designs lacked accessibility design principles made visible by end users. Solutions included large text, single click, and minimal scrolling to facilitate menu navigation for individuals using eye gaze technology. Prototype testing allowed further refinement and demonstrated high usability and engagement with activities in the app. Qualitative feedback indicated high levels of satisfaction, accessibility, and confidence in potential utility. We also present key lessons learned about working in a collaborative interdisciplinary team. Conclusions: mHealth promises to help overcome barriers to mental health intervention access. However, the development of these interventions can be challenging because of the disparate and often siloed expertise required. By describing the mHealth software development process and illustrating it with a successful case study of rehabilitation researchers, software development researchers, and stakeholders collaborating effectively, our goal is to help other teams avoid challenges we faced and benefit from our lessons learned. Ultimately, good interdisciplinary collaboration will benefit individuals with disabilities and their families. ", doi="10.2196/13511", url="http://rehab.jmir.org/2019/2/e13511/", url="http://www.ncbi.nlm.nih.gov/pubmed/31573927" } @Article{info:doi/10.2196/14887, author="Nathan, P. Edward and Winkler, L. Sandra", title="Amputees' Attitudes Toward Participation in Amputee Support Groups and the Role of Virtual Technology in Supporting Amputees: Survey Study", journal="JMIR Rehabil Assist Technol", year="2019", month="Aug", day="29", volume="6", number="2", pages="14887", keywords="amputation", keywords="amputee", keywords="survey", keywords="support", keywords="support group", keywords="technology", keywords="virtual", keywords="virtual reality", abstract="Background: Acquiring information about and living with an amputation (or limb differential) is a lifelong endeavor. Although medical institutions address the immediate medical needs of amputees, information regarding how to live life as an amputee is provided from numerous sources, one of which is amputee support groups. Objective: This study aimed at understanding why amputees join support groups, leave support groups, and possibly return to support groups as well as how technology, specifically virtual reality, might play a role in supporting patients' needs. The results are intended to provide data for support groups, to increase their impact on amputee participants. Methods: A 38-item online survey was developed based on the findings of a previous randomized trial. The survey was administered between April and September 2018 and divided into four sections: Demographics, Limb Loss History, Amputee Support Group Participation, and Technology Usage. Items used multiple-choice, drop-down menu, check-box formats with explanation boxes for open-ended responses. Descriptive analyses were performed for both qualitative (open-ended questions) and quantitative data. Results: Of the 59 amputees enrolled, 54 completed the survey. All the respondents were aged 20-39 years, and nearly half of the older respondents thought audio and video teleconferencing or avatar-based technology would increase participation in support groups. The results suggest that an early goal for amputees who join support groups is to focus on regaining mobility and functionality in order to return to their normal life. Once achieved, the goal transitions to one of social connection with other amputees, although there is a caveat: Simply being an amputee may not provide sufficient connections for developing long-term social relationships. The strongest reason for joining a support group was to learn about living with an amputation, followed by networking and learning new skills. Conclusions: The results suggest four key takeaways regarding amputee participation in support groups: (1) the needs of participants in amputee support groups change over time; (2) meeting content needs to be relevant to agendas primarily driven by participants; (3) support group participation is also driven by the desire to increase functionality by developing skills, become familiar with prosthetic technology, have more than amputation in common with other participants, and participate at the designated meeting time and location; and (4) the use of technology should support patients' needs. ", doi="10.2196/14887", url="http://rehab.jmir.org/2019/2/e14887/" } @Article{info:doi/10.2196/12982, author="Setiawan, Agus I. Made and Zhou, Leming and Alfikri, Zakiy and Saptono, Andi and Fairman, D. Andrea and Dicianno, Edward Brad and Parmanto, Bambang", title="An Adaptive Mobile Health System to Support Self-Management for Persons With Chronic Conditions and Disabilities: Usability and Feasibility Studies", journal="JMIR Form Res", year="2019", month="Apr", day="25", volume="3", number="2", pages="e12982", keywords="mHealth", keywords="adaptive mHealth", keywords="mobile apps", keywords="telemedicine", keywords="personalized medicine", keywords="self-management", keywords="self-care", keywords="caregivers", keywords="chronic disease", keywords="persons with disabilities", abstract="Background: Persons with chronic conditions and disabilities (PwCCDs) are vulnerable to secondary complications. Many of these secondary complications are preventable with proactive self-management and proper support. To enhance PwCCDs' self-management skills and conveniently receive desired support, we have developed a mobile health (mHealth) system called iMHere. In 2 previous clinical trials, iMHere was successfully used to improve health outcomes of adult participants with spina bifida and spinal cord injury. To further expand use of iMHere among people with various types of disabilities and chronic diseases, the system needs to be more adaptive to address 3 unique challenges: 1) PwCCDs have very diverse needs with regards to self-management support, 2) PwCCDs' self-management needs may change over time, and 3) it is a challenge to keep PwCCDs engaged and interested in long-term self-management. Objective: The aim of this study was to develop an adaptive mHealth system capable of supporting long-term self-management and adapting to the various needs and conditions of PwCCDs. Methods: A scalable and adaptive architecture was designed and implemented for the new version, iMHere 2.0. In this scalable architecture, a set of mobile app modules was created to provide various types of self-management support to PwCCDs with the ability to add more as needed. The adaptive architecture empowers PwCCDs with personally relevant app modules and allows clinicians to adapt these modules in response to PwCCDs' evolving needs and conditions over time. Persuasive technologies, social support, and personalization features were integrated into iMHere 2.0 to engage and motivate PwCCDs and support long-term usage. Two initial studies were performed to evaluate the usability and feasibility of the iMHere 2.0 system. Results: The iMHere 2.0 system consists of cross-platform client and caregiver apps, a Web-based clinician portal, and a secure 2-way communication protocol for providing interactions among these 3 front-end components, all supported by a back-end server. The client and caregiver apps have 12 adaptive app modules to support various types of self-management tasks. The adaptive architecture makes it possible for PwCCDs to receive personalized app modules relevant to their conditions with or without support from various types of caregivers. The personalization and persuasive technologies in the architecture can be used to engage PwCCDs for long-term usage of the iMHere 2.0 system. Participants of the usability study were satisfied with the iMHere 2.0 client app. The feasibility evaluation revealed several practical issues to consider when implementing the system on a large scale. Conclusions: We developed an adaptive mHealth system as a novel method to support diverse needs in self-management for PwCCDs that can dynamically change over time. The usability of the client app is high, and it was feasible for PwCCDs to use in supporting personalized and evolving self-care needs. ", doi="10.2196/12982", url="http://formative.jmir.org/2019/2/e12982/", url="http://www.ncbi.nlm.nih.gov/pubmed/31021324" } @Article{info:doi/10.2196/12089, author="Routhier, Fran{\c{c}}ois and Mortenson, Ben W. and Demers, Louise and Mahmood, Atiya and Chaudhury, Habib and Martin Ginis, A. Kathleen and Miller, C. William", title="Mobility and Participation of People With Disabilities Using Mobility Assistive Technologies: Protocol for a Mixed-Methods Study", journal="JMIR Res Protoc", year="2019", month="Apr", day="16", volume="8", number="4", pages="e12089", keywords="mobility limitation", keywords="physical barriers", keywords="social participation", keywords="assistive technology", abstract="Background: Many community-dwelling individuals living with a disability use mobility assistive technologies (MATs). MAT devices are generally beneficial for individuals with mobility impairments. However, less is known about the specific factors that may foster or deter mobility and community participation. Objective: The purpose of this protocol is to describe the methodology for a study including three main objectives: (1) to understand the places people using MAT go and the things they do, (2) to identify perceived barriers and facilitators as well as users' desired environmental modifications, and (3) to understand subjective and objective issues related to environmental accessibility. Methods: A mixed-methods study was conducted in Vancouver and in Quebec City. Qualitative interviews were conducted to address all three objectives. In addition, Objective 1 was achieved through collection of global positioning system (GPS) data and activity diaries with 36 participants per site who represented six types of MAT users (ie, cane, walker, crutches, manual wheelchair, power wheelchair, and scooter). All participants were invited to take part in all aspects of data collection. PhotoVoice was used to address Objectives 2 and 3. Two environmental audits were used to address Objective 2. The Stakeholders' Walkability/Wheelability Audit in Neighbourhood (SWAN) measured perceptions related to a variety of community environmental features associated with mobility and participation. A total of 24 participants were recruited to each study site for SWAN data collection. The Measure of Environmental Accessibility (MEA) was also used to objectively measure access to exterior and interior environments selected earlier in the project by the participants that could benefit from improvements. Results: Funding for this study was obtained from the Social Sciences and Humanities Research Council of Canada. Approval was obtained from the University of British Columbia Research Ethics Board and the Centre int{\'e}gr{\'e} universitaire de sant{\'e} et de services sociaux de la Capitale-Nationale Research Ethics Board. Regarding the MEA evaluations, 19 locations (ie, buildings and exterior spaces) where obstacles have been identified by the participants of the PhotoVoice focus groups have been evaluated in Quebec City and 20 locations have been identified in the Vancouver region by the participants of the community forums. Data collection for this project was completed in December 2018. Analysis and writing of manuscripts are underway. Conclusions: The use of a variety of methods to gather data on participation and mobility will allow a more holistic consideration of factors influencing mobility with a MAT device. This study will provide objective information about the mobility of participants and identify barriers and facilitators that impact their mobility and community participation. Through the mixed-methods approach employed in this study, we will gain a subjective evaluation of the participants' neighborhoods, including personally meaningful information on environmental features that influence participants' everyday mobility and participation. We will also gain an objective evaluation of particular obstacles that community users of MAT identify as significant barriers to their ability to access public environments. We anticipate that these findings will help to identify a broad spectrum of solutions to improve the mobility and community participation of MAT users. International Registered Report Identifier (IRRID): DERR1-10.2196/12089 ", doi="10.2196/12089", url="https://www.researchprotocols.org/2019/4/e12089/", url="http://www.ncbi.nlm.nih.gov/pubmed/30990459" } @Article{info:doi/10.2196/12958, author="Watfern, Chloe and Heck, Chloe and Rule, Chris and Baldwin, Peter and Boydell, M. Katherine", title="Feasibility and Acceptability of a Mental Health Website for Adults With an Intellectual Disability: Qualitative Evaluation", journal="JMIR Ment Health", year="2019", month="Mar", day="28", volume="6", number="3", pages="e12958", keywords="mental health", keywords="internet", keywords="intellectual disability", keywords="qualitative evaluation", keywords="qualitative research", keywords="health services accessibility", abstract="Background: Electronic mental health (e-mental health) programs for people with an intellectual disability are currently underexplored but may provide a way of mitigating some of the barriers that this population faces in accessing appropriate mental health services. Objective: The aim of this study was to examine the feasibility and acceptability of Healthy Mind, an e-mental health program for adults with an intellectual disability developed by the Black Dog Institute, focusing on the design and implementation of the website. Methods: A qualitative research design was used, which involved semistructured interviews and focus groups with people with an intellectual disability, support workers, and allied health professionals. People with an intellectual disability were also observed while using the website. A thematic analysis was used to interrogate the interview transcripts and observational field notes. Results: Participants found the content of the website informative and appreciated the many ways that the website had been made accessible to users. Participants voiced some differing requirements regarding the way information should be presented and accessed on the website. Acknowledging different types of support needs was identified as an important issue for website dissemination. Conclusions: The Healthy Mind website promises to provide an excellent tool for people with ID and their supporters. This research has pragmatic implications for the future development and implementation of the program, while contributing to knowledge in the broader fields of e-mental health and inclusive design for people with an intellectual disability. ", doi="10.2196/12958", url="http://mental.jmir.org/2019/3/e12958/", url="http://www.ncbi.nlm.nih.gov/pubmed/30920378" } @Article{info:doi/10.2196/11689, author="Lai, Byron and Wilroy, Jereme and Young, Hui-Ju and Howell, Jennifer and Rimmer, H. James and Mehta, Tapan and Thirumalai, Mohanraj", title="A Mobile App to Promote Adapted Exercise and Social Networking for People With Physical Disabilities: Usability Study", journal="JMIR Form Res", year="2019", month="Mar", day="19", volume="3", number="1", pages="e11689", keywords="exercise", keywords="telehealth", keywords="rehabilitation", keywords="mHealth", abstract="Background: People with physical disabilities (PWD) experience several unique challenges that prevent them from participating in onsite exercise programs. Although mobile apps can provide a ubiquitous channel for delivering convenient exercise services within the community, no exercise apps have been designed for people with disabilities who experience certain functional limitations. Objective: The aim of this study was to examine the usability of a mobile exercise app in PWD. Methods: A sequential explanatory mixed-method design was used to holistically test usability in 4 core areas: effectiveness (ie, ease of use), efficiency (ie, operation speed), perceived satisfaction, and usefulness. Participants completed 7 face-to-face usability tasks and 1 structured interview. Equipment included a computer tablet that came preinstalled with the exercise app. The app included exercise videos that focused on several components of fitness: aerobic capacity, muscular strength, functional strength or balance, and range of motion. The app contained 3 different versions of the exercise program: (1) a program for people with the ability to use the upper and lower limbs, (2) a seated program for people with the ability to use only upper limbs, and (3) a program designed for people with hemiparesis. The app also included educational resources in the form of infographics aimed at addressing key social cognitive theory constructs included social support, outcome expectancies, self-efficacy, and barriers or facilitators to exercising. Participant characteristics and quantitative usability data were descriptively reported. Qualitative data were analyzed using thematic analysis. Results: A total of 12 PWD tested the usability of the exercise app and completed 96\% (69/72) of the usability tasks on the first attempt. Operation speed varied among users, which prompted the development team to make minor revisions to the app. Qualitative results demonstrated 3 overarching themes: facilitates exercise adoption, positive experiences of videos, and easy to learn. Participants noted that the app circumvented several barriers to exercise associated with leaving the home (eg, inclement weather conditions, exacerbations of health conditions or disability symptoms, difficulties with transportation, and social support). Conclusions: The mobile exercise app provided a simple platform that was effective, useful, and appreciated by PWD. Participants also perceived the app as easy to use and felt it was a valuable tool for assisting PWD to obtain regular exercise. Study findings also offered insight into the participants' preferences for mobile exercise apps that can aid future research and development projects. Future exercise trials are needed to determine the true impact of mobile app technology on lifestyle physical activity in people with disabilities. Trial Registration: Clinicaltrials.gov NCT03024320; https://clinicaltrials.gov/ct2/show/NCT03024320 (Archived by WebCite at http://www.webcitation.org/75hNLgRFH). ", doi="10.2196/11689", url="http://formative.jmir.org/2019/1/e11689/", url="http://www.ncbi.nlm.nih.gov/pubmed/30888325" } @Article{info:doi/10.2196/12355, author="Litchman, L. Michelle and Tran, MJ and Dearden, E. Susan and Guo, Jia-Wen and Simonsen, E. Sara and Clark, Lauren", title="What Women With Disabilities Write in Personal Blogs About Pregnancy and Early Motherhood: Qualitative Analysis of Blogs", journal="JMIR Pediatr Parent", year="2019", month="Mar", day="14", volume="2", number="1", pages="e12355", keywords="disabled persons", keywords="pregnancy", keywords="blog", keywords="women's health", keywords="parenting", keywords="mothers", keywords="spinal cord injury", keywords="autism", keywords="traumatic brain injury", abstract="Background: More than 1 in 10 women of reproductive age identify as having some type of disability. Most of these women are able to become pregnant and have similar desires for motherhood as women without disability. Women with disability, however, face greater stigma and stereotyping, additional risk factors, and may be less likely to receive adequate reproductive health care compared with their peers without disability. More and more individuals, including those with disability, are utilizing the internet to seek information and peer support. Blogs are one source of peer-to-peer social media engagement that may provide a forum for women with disability to both share and obtain peer-to-peer information and support. Nevertheless, it is not clear what content about reproductive health and pregnancy and/or motherhood is featured in personal blogs authored by women with spinal cord injury (SCI), traumatic brain injury (TBI), spina bifida, and autism. Objective: The objective of this study was twofold: (1) to examine the information being shared in blogs by women with 4 types of disabilities, namely, SCI, TBI, spina bifida, and autism, about reproductive health, disability, health care, pregnancy, and motherhood; and (2) to classify the content of reproductive health experiences addressed by bloggers to better understand what they viewed as important. Methods: Personal blogs were identified by searching Google with keywords related to disabilities, SCI, TBI, spina bifida, and autism, and a variety of keywords related to reproductive health. The first 10 pages of each database search in Google, based on the relevance of the search terms, were reviewed and all blogs in these pages were included. Blog inclusion criteria were as follows: (1) written by a woman or care partner (ie, parent or spouse) of a woman with a self-identified diagnosis of SCI, TBI, spina bifida, or autism; (2) focused on the personal experience of health and health care during the prepregnancy, prenatal, antepartum, intrapartum, and/or postpartum periods; (3) written in English; and (4) published between 2013 and 2017. A descriptive and thematic qualitative analysis of blogs and corresponding comments was facilitated with NVivo software and matrix analysis. Results: Our search strategy identified 125 blogs that met all the inclusion criteria; no blogs written by women with spina bifida were identified. We identified 4 reproductive health themes featured in the blog of women with disabilities: (1) (in)accessible motherhood, (2) (un)supportive others, (3) different, but not different, and (4) society questioning motherhood. Conclusions: This analysis of personal blogs about pregnancy and health care written by women with SCI, TBI, and autism provides a glimpse into their experiences. The challenges faced by these women and the adaptations they made to successfully navigate pregnancy and early motherhood provide insights that can be used to shape future research. ", doi="10.2196/12355", url="http://pediatrics.jmir.org/2019/1/e12355/", url="http://www.ncbi.nlm.nih.gov/pubmed/31518332" }